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Weight, Exercise, and Gynecological Cancers

alicia2020
Posts: 162
Joined: Sep 2020

Hi, Ladies!

i've been doing so much research in the last year and have finally decided I would/should throw something out there for y'all to think about. My main point is that I'm more than a little irritated that I had to discover these things by myself!

So....I'm 66 now. I'm tall and large-boned. I'm the opposite of a petite woman! My entire life I've watched what I eat and have vacillated between my ideal weight and 20 or 30 lbs on either side of it! No Doctor Ever has told me that I should lose weight! No Doctor of any kind has Ever said, "You know, you really should lose a few pounds." I never have had high cholesterol, heart disease, or diabetes....so no co-morbidities. Many times when in the company of friends or family and I'm refusing to eat this or that, they ask, " Are you on a diet??" I always laugh and reply, "Are you kidding? I've been on a diet my entire life!!" I've always been very active -- a regular walker, skiing (downhill & on water), kayaking, etc.

Now, in all my reasearch I have discovered that too much fat can create too much estrogen, which can contribute to cancer...specifically gynecological cancers! Would it have killed someone to tell me that? Seriously, a gynecolorist couldn't have said, "You know you're probably carrying an extra twenty pounds, and even though you look great and that's not interfering with your ability to do any activities you want to do, it could contribute to your eventual potential to develop cancer."

And my preferred way to exercise is walking. There's no telling how many thousands of miles I've walked in 60+ years! So, now that I'm essentidally done with my cancer treatment, I've been working hard to get back to my normal walking routine - several miles a day and trying to get back to an hour each day, on at least five days a week, I really don't enjoy it! Especially now, and in the heat of summer, I tend to fuss and cuss while doing it! But I've got a list in my head of all the good things that it does for me! I repeat those things in my mind to offer myself encouragement! The newest addition to my list was, "And all the above things should collectively reduce my chances of recurrence."

Yesterday I thought I'd Google it..."exercise prevents cancer recurrence." A huge list of articles popped up speaking to the topic! And they ALL said the same thing. The research results ALL reported that regular aerobic exercise, specifically 150 to 300 minutes a week, can reduce the risk of recurrence (of a whole list of cancers) by 20-40%!! That's huge!!! The list of cancers with great benefits of reduced risk of recurrence included breast, colon, and gynecological - specifically endometrial.

Even the most recent paperwork from my oncologist's office warns of the things I should avoid....tobacco, alcohol, obesity, etc. Sure..that makes sense! But nowhere did anyone encourage exercise! Right.... I know we all know the health benefits of exercise....but I think telling me that my chances of recurrence could be greatly reduced by regular exercise is some pretty important information!! 

So...that's what I know! I hope that it might help those of you struggling like me to regain strength after treatment and prevent yourselves from being in a chemo treatment room again!! I know it's given me renewed resolve!

Love & prayers to all!

😎, Alicia

 

alicia2020
Posts: 162
Joined: Sep 2020

No Doctor Ever of any kind warned me that I might be more likely to develop a gynecological cancer because I hadn't had children! Most of you know that's one of the first things on the list of factors that can contribute to GYN cancers! So, the fact that one never has a pregnancy, never breast feeds, and has no need to take a birth control pill...hence, over a period of 25-30 years ovulates more times... is at greater risk! In my opinion, it sure feels like a double whammy! You can never have children AND this means your cancer risks are higher!

And it would have been nice if someone would have said, "These are risk factors. Therefore, we should keep a closer eye on your gynecological health!" I never had any problems or pain and got regular Pap smears. I was doing my part!

I know that "ship has sailed" for those of us here, but such information could help daughters & granddaughters!

😊, A

MAbound
Posts: 1153
Joined: Jun 2016

The lack of education about uterine cancer had me mad after the fact, too. I think part of the problem is the lack of a screening test for it like there is for breast and cervical cancer. Breast and cervical cancer prevention seems to get all of the attention.

A while back someone shared an article about a possible tampon-like screening test for uterine cancer coming down the pike. It would be interesting to know if any progress has been made on that, but I don't know.

Don't beat yourself up about the shoulda, woulda, coulda. All you can do is what you are doing now as you go forward. Don't obsess about the minutes and/or miles and perhaps count in the activities you actually enjoy doing as part of your regime. You've survived...have some fun!

alicia2020
Posts: 162
Joined: Sep 2020

I'm trying! And the new exercising info gives me a great incentive to keep working at it!! 
The main message of all those articles was KEEP MOVING! So I will!

❌⭕️, A

 

RainbowRita's picture
RainbowRita
Posts: 51
Joined: May 2021

Although I went through a lengthy period where I wasn't going to a doctor due to insurance issues, when I did finally see a doctor, she only suggested I lose weight, but never said WHY! She was very thin herself, so what she said at the time only embarrassed me as I felt it was more of a apperance issue rather a health concern. I get the whole “fat shaming” thing, but doctors need to be exempt from that because they KNOW there are real health issues related to obesity. If she had said that carrying extra weight greatly increases the changes that I will get Type II diabetes and endometrial cancer, I would hope that I would have had enough sense to do something about it.  Back in 2017, I was diagnosed with diabetes, but even then my doctor never stressed how important it was to lose weight and that it would lower risks factors even at that late date. I went to the diabetes education classes and even the dietician pussy-footed around the fact that just losing weight would lessen our need for insulin. Health care workers shouldn’t be worried about hurting people’s feelings, but should give us the info we need to make wise lifestyle choices.

 It is too easy for doctors to just put their obese newly diagnosed diabetes patients on drugs and insulin. Speaking of insulin, that made it even harder to lose weight. It wasn't until I got a continuous glucose monitor two years later that I managed to get in control of things. I could see in real time just how different foods effected my glucose levels. I finally lost enough weight to get off of insulin about a year ago and now I just really try to watch carb consumption and avoid a lot of processed foods. I've lost 50+ pounds since I got my CGM, a good thing, but it sure would have been a lot more useful if I had done that many years ago. I won’t say “too little, too late”, because it was still a good thing to do, but sure as heck would have done me more good if I had done that decades ago.

I have significant regrets and guilt about not doing more sooner, especially after an aunt of mine asked if I waited to long to go to the doctor when I told her what stage cancer I had. Even though I love to read and had access to the internet for many years, did I ever think to research the risk factors for various diseases due to obesity? Nope, I wasn’t totally ignorant, I knew being obese increased chances of heart disease & diabetes, but cancer was never on my radar even though my mom was diagnosed with endometrial cancer (fortunately for her, caught early and hysterectomy was her only treatment for a cure) did I ever check out what I could do to prevent getting uterine cancer myself? Nope, buried my head in the sand about that too. 

Do you ever wish that you could go back in time with the person you are now and make different life choices? I sure do. I have been on the fence about whether I should put out a PSA of sorts saying something about obesity increasing your risk for endometrial cancer on Facebook in the hopes that someone could learn from my mistakes. There are so many women in the US who don’t know that carrying excess fat puts them at higher risk for endometrial cancer, so wonder if I should say something. Not too many people that are my Facebook “Friends” know about my cancer diagnosis, so not sure if I want to expose myself in that way. But if it gets even one woman to think that maybe she should make some changes in her lifestyle, maybe it would be worth it.

 

I will try MAbound, to follow your advice in regards to the "shoulda, woulda, couldas" :-)

Kathy G.'s picture
Kathy G.
Posts: 229
Joined: Dec 2012

Alicia it is good you put this out there!

I assumed people knew that obesity and smoking were two of the highest risk factors for most cancers. In the case of uterine cancer too much estrogen is definitely an issue as your research shows.

My regular gynecologist warned me several years before my diagnosis I was at an increased risk because of my weight, but I don't recall him discussing how estrogen played a part in the risk. 

I wasn't able to lose the weight until 3 years after my surgery and only thru the help of weight loss surgery.

I have always found that doctors and even the various cancer societies tend to be very general in discussing risk factors. I'm sure there is reasoning behind that, but it frustrates me given any serious health problem!

Like others on here have said in reference to their cancer...they have learned more on here about their cancer then from any other source. Kinda sad bc no one is going to randomly  search out message boards for preventative info....

alicia2020
Posts: 162
Joined: Sep 2020

I was just thinking that yes..,we've always been told that obesity contributes to some cancers, but you're right! They're never very specific and they certainly don't explain about estrogen's role in it! And since I've never been obese, I didn't worry about it! I just wish someone would have mentioned that even an extra twenty pounds was probably too much!

And I wanted to get it out there about the exercise helping to prevent recurrence! ALL of us here can use all the help we can get to prevent that! Here I am...taking this powerful drug (upon my docto's recommendation!) to prevent recurrence...and yet my own research led me to that valuable information!!

😎, Alicia

 

Maxster
Posts: 89
Joined: Apr 2020

I am fortunate to have a son-in-law who is a physician researcher at Memorial Sloan Kettering.  He knew and told me clearly that exercise was important to my immune system and would help me fight the cancer.  I have always done some exercise and was going to the gym at least 5 times a week.  But as luck would have it I still got serous cancer.  I exercised throughout my chemo and radiation and am still at it.  I exercised in front of videos during the worst of Covid and have resumed my classes at the Y.  I tell everyone how important exercise is to the immune system.  I also learned through my son-in-law that some research at MD Anderson showed the benefits of 30 grams of fiber per day for both cancer patients and for prevention.  That is harder to do but I try to get that in everyday.  I was surprised to learn from a dietician that she knew of the 30 grams for women and recommended it in a presentation she did for cancer survivors.  My regular doctors were not as enthused about exercise and fiber but I kept it up anyway.  They thought it was a good idea but really did not recommend it.  Serous cancer is lousy and evidently weight is not necessarily a risk factor.  But I know it is for endometrial cancer. So I am just with all of you that exercise and diet are key factors to preventing recurrence.  I know there is no guarantee but I like knowing there is something I can do.

Dak82's picture
Dak82
Posts: 82
Joined: Dec 2020

Interesting you should bring this up Alicia. At my first visit with my gyn oncologist she told me "there's no reason you should have this cancer; you don't match any of the textbooks". I train for and do triathlons, eat right, my weight hasn't varied much for 40 years except when I was pregnant. There is no reason for anyone to get cancer. You can do all the right things and it still happens. What's interesting is to discover what the trigger event was that caused those cancer cells to start growing. we all have cancer cells in us but we don't all get cancer--it's so individual. Were you exposed to something in the environment? Did you carry a beeline mutation that was triggered?

Many people won't change their life long habits until faced with a life altering event like a heart attack or cancer. If all hams only did what was good for them we could eliminate most of the diseases on earth. Don't beat yourself up. Love who you are.

Cheers,

Deb

BluebirdOne's picture
BluebirdOne
Posts: 455
Joined: Jul 2018

Those of us who were dx at an older age, I was 67, Type 2 EC, have a life long history. I was born in 1950. There are photos of my mother with a cigarette in one hand and a cocktail in the other when pregnant with me. Both my parents smoked, at home, in cars with the windows closed. We used to chase after the DDT trucks with our bicycles, breathing in that horrible pesticide. There was asbestos everywhere, schools, home, churches. Lead paint was the norm. You get the picture. We are the sum of our lives exposed to cancer causing substances. Now we know how dangerous it is to be overweight and not exercise. I really hate this Calvinistic attitude that we deserve our cancers (or any illness) as a punishment for our choices in life, whether voluntary or involuntary. Many do everything right in life and still get cancer, many who have poorer lifestyles do not. I have one doctor who is very wise, he says that we can't change the past so look forward to doing what you can to be more healthy, vs. a few of the fat shamers I have had. I have had terrible osteoarthritis since I was in my 40's, with 5 surgeries on my hands alone, bad back, one knee, and one ankle. When I complained that I could not exercise as much as I wanted to because of the pain, he said take your inspiration from the para-Olympians, work around your issues, if they can find a way, so can you. No shaming, just sound common sense advice. As we go through treatment and recovery, we can all find a way to be more healthy as we are able to physically, and stop blaming ourselves for past choices or circumstances. The one thing I also do is try to educate everyone I know (who express interest) about the lack of screening tests for EC, that many of us are not taken seriously by our gynecologists, that obesity, lack of exercies contributes, that to never ignore bleeding. Few if any people come to this group before they were dx so the knowledge here is not getting out to the general public. Our doctors also do not do enough to educate us, but then caution us against using Dr. Google. As the ParaOlympic Games are coming in August, I will take my inspiration to keep exercising from them. 

Denise 

els19
Posts: 105
Joined: Jun 2014

Thanks Denise! You put it all in perspective. Who knows what any of us were exposed to at our age. I didn't fit the model for UPSC at all. I once read a book written by an oncologist who said that except for a couple of cancers he really felt it was just bad luck. So many, like you said, did everything right and still got cancer. Others did everything wrong and didn't. So yes, we know we need to eat healthy and exercise. But so does everyone else. Many swear by supplements but some research and studies show that many can be counter productive. And it's why I always check everything with my doctor. We all want to do all we can to beat this disease and live as long as possible. But I don't think there's any magic answer. I don't think it's all in our control. I've always hated when someone tells me I'll be fine because I always have such a positive attitude. So, if I have a bad day and I'm depressed and ate a big bowl of ice cream and didn't go for a walk or pray that day, did I just lessen my survival chances? Of course, when I'm feeling positive I'm more likely to exercise and eat healthy. But I refuse to blame myself for my disease. Maybe it was something I was exposed to when I was five or maybe it's just bad luck. I think all any of us can do is the best we can. I'm currently reading a book, Cancer is Funny, written by a young Methodist minister about his own journey with cancer. It's not really religious and he does swear a lot, but he brings up a lot of these ideas. It's also funny. So, I advise adding laughter to the healthy eating and exercise. But don't stress if you don't, some days we just hang on.

RainbowRita's picture
RainbowRita
Posts: 51
Joined: May 2021

Thanks Denise for your comments...especially this:

" I really hate this Calvinistic attitude that we deserve our cancers (or any illness) as a punishment for our choices in life, whether voluntary or involuntary. Many do everything right in life and still get cancer, many who have poorer lifestyles do not." 

I have a friend who is the same age as me, is 50+ lbs. overweight, eats a ton of sugar & a poor diet generally speaking. She also smokes but is relatively healthy. No diabetes or cancer for her. So that is certainly true that some people can beat the odds whereas others won't. 

And els19, I have felt like this also. 

"I've always hated when someone tells me I'll be fine because I always have such a positive attitude. So, if I have a bad day and I'm depressed and ate a big bowl of ice cream and didn't go for a walk or pray that day, did I just lessen my survival chances? Of course, when I'm feeling positive I'm more likely to exercise and eat healthy. But I refuse to blame myself for my disease. Maybe it was something I was exposed to when I was five or maybe it's just bad luck. I think all any of us can do is the best we can."

One friend...and I know she means well told me to "not talk like that" when I mentioned 5 year survival rates not long after sharing my dianosis with her. She said I have be more positive. I agree that having a positive attitude is important, but we also need to come to grips with what things might be like us going foward.  A person can't always be upbeat and positive when you don't feel well. And aren't we allowed to have a "pity party" once in awhile? This whole "cancer stuff' is a lot to deal with and it gets overwhelming at times. I know she means well, but hearing her say that to me just felt to me like she didn't want to hear it. That's why it has been so helpful to me to come here and hear what you all have to say. Your insights and advice are invaluable. So thanks again to all of you for sharing. :-)

els19
Posts: 105
Joined: Jun 2014

I once had a friend tell me that no one wanted to hear me talk about cancer. It just might have been the most honest comment I received. I'm in a recurrence  and she made that comment with my first go round. Unfortunately that same friend is now in her own cancer battle and we now have long discussions. I've learned that most people just can't handle cancer. It's just too scary for them. The same family and friends who disappeared or distanced themselves the first time, have retreated again. Others are amazingly supportive. But most, unless they've been through a serious illness themselves, don't really understand. I think if you polled cancer patients most would say they hate those positive attitude comments. We realize we can't really control this illness. Any sane person has down days when battling a serious illness. Last time I read a book, What Not To Say To A Person With Cancer. I had heard every comment. And I realized I had said some comments myself. People mean well but the word cancer is just too scary.

BluebirdOne's picture
BluebirdOne
Posts: 455
Joined: Jul 2018

I have said this before in prior posts, that we are shockingly honest here in a way we cannot be sometimes with our family and friends. It is the proverbial safe space. What is also true is that the "think positive" police can be devastating to us emotionally because they don't allow us to talk about what we are going through, to grieve what we have lost, to come to terms with our situation. I don't mind admitting to anyone here what an emotional wreck I was during the 1st year, but only my husband saw and heard the worst of my days. I figured out pretty quickly that my kids and friends could not handle seeing me melting down, especially in the early days. What could be more terrifying than to see a bald woman sobbing on the couch, Mom, the strong one in the family, unable to cope? What I did learn is that I needed to grieve my old life and come to terms with my future, before I could move to a stronger emotional place. Actually, I had no choice because I was so emotionally fragile that I sometimes just could not control when I was melting down. I learned whom I needed to protect myself from and whom was safe to talk to. I had an acquaintance die of ovarian cancer many years ago and I never knew how to talk to her, so I know it is hard for others to talk to us. As far as blame goes, I cannot think of anything more counterproductive than blame. I can't change the past, I can only learn from it and try to do better. So the takeaway is that there is no one way to go through this, and we should not be too hard on ourselves.

Denise

RainbowRita's picture
RainbowRita
Posts: 51
Joined: May 2021

I guess that either the two of you are really good friends and you realized she meant well or you are a very forgiving person. Smile It may have been honest, but the comment was certainly insensitive. But the context of the conversation and the situation where it occured matters and I wasn't there. But sad to say, I think she was right, as I've been telling myself that lately. I think you are right though that the ones who are supportive are the ones who've experienced something similar or with a close family member so they find it less awkward to talk about. Kind of how people are afraid to talk to someone who has recently lost someone. Big 'ol elephant in the room. I was at our dog club's first "in-person" meeting since Covid a month ago and most of the people there wouldn't even look at me, much less talk to me. I wanted to shout at them, "Will you just act normal? I'm still the same person. You act like am I invisible and what are you, twelve?" Most of these people I have known for years, so I didn't expect things to be so awkward, but I think the wig I was wearing was what made matters worse. 

I'll have to check out that book. :-) I just googled those words and found a few online articles. Here's one: https://cancerservicesonline.org/supporting-someone-through-cancer-what-to-say-what-not-to-say 

They also have a good article for those of us with cancer on what to tell people. I don't know about the rest of you, but I have a tendency to just put on a "happy face" and say I'm doing fine. When people say to let them know if I ever need any help, I thank them for their offer, but then tell them I'm doing OK. One reason is because I'm not sure they actually would follow up on an offer and that would be awkward and dissapointing to me if I ever did ask for them to do something specific. And in regards to helping with housework, I'd be embarrassed to have someone come in and clean my untidy house and I'd feel I'd have to clean it before they'd come and then that would just be more work for me. ;-) I just have two more chemo cycles to endure and then hopefully I'll be done with it. So I figure I can handle looking at the clutter on the counters a little longer. My next chemo cycle is next Thursday and then the last one is scheduled for July 28th. So looking forward to August! :-)

https://cancerservicesonline.org/when-you-are-diagnosed-communicating-with-friends-and-family 

els19
Posts: 105
Joined: Jun 2014

I found the comment very insensitive at the time. But I was getting so many insensitive comments. I did the same thing you did Denise. I became very protective of myself and tended to avoid people and situations to protect myself. I felt I was standing on a precipice just hanging on and negativity could just send me over the cliff. I tend to be honest on how I'm feeling with most people but others I just say fine. This time around I even took up some people on their offers of help. I found they were actually very happy to help me with things like a grocery run. I'm very lucky to have a wonderful husband who does most of the work around the house and with whom I can always lean on. But when he recently badly injured his hand, I realized all the things that are still hard for me to do. For some reason I just can't give in to someone cleaning my house for me. I'd feel like I'd have to clean it first too. I had no problem hiring someone for the yard work. But somehow your home is just too personal. So, don't worry about the clutter. It will wait and you really will feel up to cleaning it up someday soon.

 

 

 

hanging on and on some days those insensitive comments could send me straight over. 

Maxster
Posts: 89
Joined: Apr 2020

I think I have been lucky to be around supportive people but even then I felt I had to keep up a happy face.  I haven't faced insensitive comments but a person in my support group was happy to learn she had the BRACA gene to stem off the comments that somehow her breast cancer and now ovarian cancer was her fault!  I could not think of something more awful.  But I do know family and friends prefer the good news and not my fears.  I try to do what I can do to improve my chances and also accept most of this is out of my control.  But I do fear recurrence and what it might mean.  I feel like I did all I could during chemo and the thought of going through that again just depresses me.  I feel hopeless at times.  I do a lot of self-talk as many of you do to keep me sensible and in a positive direction.  But there are days when a cloud comes over.  Not sure what triggers it.  On the luck thing, I feel like bad luck dogs my family.  My mother died of breast cancer at age 44.  It was in the fifties and there wasn't much treatment besides surgery.  She did live for six years after her first masectomy but by the second the cancer had spread.  My sister also had breast cancer.  A blood test did not reveal any genetic link.  In fact the geneticist said it is possible my mom had two different cancers! My daughter had a scare with her breast but it was benign, thank God.  My gyn-onc was so kind to me when I was looking for a reason.  He just said so kindly that this cancer was not my fault.  I didn't do anything to cause it.  My cancer is also not genetic.  I would say good for my daughters but our luck doesn't seem to run on the dark side.  Thank you all for sharing and letting me express myself.  I try not to think about it but it is on my mind most days.  I am over 1.5 years from diagnosis.  I hope the thoughts diminish soon.

BluebirdOne's picture
BluebirdOne
Posts: 455
Joined: Jul 2018

I am almost three years out from my treatment for UPSC. NED so far. The first year I was a puddle of emotions, but once I realized it was healthy to give into it, I was able to see how allowing yourself to be sad, angry, cry, (no shame in any of that) I gradually was able to process (I hate that word but it is descriptive) what I was going through. It takes time to adjust emotionally, so take that time, realize it is normal and do your best to be good to yourself. The 2nd year was easier, but I was still terrified of every ache and pain, still worried about recurrence. In my third year, I am much happier, emotionally stable, rolling with the punches. I do not feel the sense of doom I had earlier, but always in the back of my mind I know it can come back. I feel the same as some, everyday I have now is a gift and post Covid we are going to have a dedicated Year of Fun. Family, grandkids, friends, a bit of travel.

Denise

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

My one sister and closest friends were fine when I was diagnosed and having treatment. But my other sister was one of those annoying "positive" people. Of course, I was hopeful that I'd have good results from treatment, but I was realistic enough to know that the odds weren't great, given my stage and type of cancer.

Well, I'm still here 4 years after chemo ended and with no reason to believe that I'm not NED. It's a bit irritating to think that my positive sister is probably thinking "I told her so," but in this case I'll have to give her a pass since proving she was wrong would definitely not be in my best interest.

Carcinosarcoma usually recurs within the first year or two. Once I hit the two-year mark, I figured whatever time I had after that was "found time" that I was going to appreciate.

Maxster, both my parents had cancer and I learned that I have Lynch Syndrome. So I know that even if I don't have a recurrence of my uterine cancer I can always develop another kind. All I can do is have the mammograms, colonoscopies and other tests on a regular basis and hope if something else develops it will be caught early. I haven't stopped thinking about cancer completely, but I am renewing my magazine subscriptions for more than one year at a time once again.

Lyn70
Posts: 60
Joined: Jan 2021

Six months past hysterectomy and nearing two months past chemo. I think I have been the most stressed during this period of non activity. I know this is a common experience. No infusion pals or cheerleaders to encourage me. I put on my happy face because apparently 'I Am Strong'. This is according to my family and my sister who said, "You got this!" I cannot tolerate that phrase. The one thing I know I have got is cancer. I am one of 'those people' who flip to the end of the book so in my mind I imagine my end. I cry a great deal. 

I do regret not controlling my obesity. The checklist for endometrial cancer, I checked every box. Obese, started cycle at an early age, never had a child and diabetic. No one ever told me this cancer was looming in my future. Years prior, an ob told me after an exam and a negative HPV test, I did not need to come back for exams. I was relieved. I bring this up because I share a concern for awareness and education for future women. I believe vaginal ultrasounds should be mandatory testing on post menopausal women. It is an early indication of endometrial cancer in those with thickened lining. I had a friend alert me to see my Primary by her statement that 'No amount of post menopausal bleeding is okay!' Thank God for her. 

I am starting 28 days of external radiation and 3 Brachey placements next week. I am praying this period brings me a sense of peace and a fighting spirit. I love you ladies and reading your posts has heloed me tremendously. 

 

RainbowRita's picture
RainbowRita
Posts: 51
Joined: May 2021

Lyn70, your story is so similar to my own…slight differences, but amazing the same amount of "boxes ticked".  We even had our surgeries about the same time. I have one child, but he was born when I had just turned 20, so still lots of years with excess estrogen. I gained most of my weight within a year of his birth. Lost most of it a year later in order to fit into a bridesmaid dress (largest size was a 14, so had no choice), but slowly it all came back and it stayed put until recently. 

I have yet to fill in the "My CNS space", but should do that. I had a radical hysterectomy of 12/14. DX was Grade 1, Stage IIIB endometrial cancer. Treatment is chemo and radiation, both external and brachy/internal for me also. However, I am doing "sandwich regime" with 3 cycles of carbo/taxol chemo, then 25 external beam, followed immediately by 3 internal, then a 4 week recovery period and have recently started chemo again. Going in next Thursday for cycle #5. 

Because my mom had the same cancer at about my age I wasn’t that freaked out about the initial diagnosis. Although now reading about pregnancies reducing the risk, I am surprised she did get endometrial cancer as she had 5 pregnancies and 6 kids (I have a twin brother). And unlike me, no diabetes…I got that from my dad. So for that reason, when I had my episode of "post-menopausal bleeding" I didn’t think it was going to be that big of deal. Just figured I'll have hysterectomy like she did and be done with it. When I went to see the gyn onc, she told me that she does her own pelvic exams "just to be thorough". Sure am glad she did as she found a "suspicious nodule" in the upper part of my vagina that the gynecologist missed. So instead of an out-patient laparoscopic hysterectomy that I had been scheduled for, it turned into a  radical hysterectomy with a 5 day stay in the hospital and an 9" incision. My gyn onc started out laproscopic and then converted to an "up and down" .  She told me she wanted to do a thorough look around to check for any signs of cancer even though I had a CT and an MRI and nothing was detected. I told her I was OK with that. However, I went home with a (temporary, fortunately) paralyzed bladder and a Foley catheter in addition to horrible muscle spasms in my abdomen for about a week. I healed well though and am fine now.

Since it was time for my annual exam anyway, I had a Pap test when I saw my pcp about the bleeding. That came back negative even though the cancer had spread to the cervix...so Pap tests will NOT diagnose endometrial cancer. I agree with you whole-heartedly about needing better testing for this disease. I can't tell you how many articles I read online that said because "most" uterine cancers are caught early, there are no screening tests for it at this time. Made me want to scream, "Yeah, well most isn't all!" However, I did read about a study where there might eventually be a screening test that can detect cancer cells in vaginal fluid. That would sure be a good thing if that turns out to be a reality. 

I know friends are just trying to be helpful and supportive, but like you I hate the "You got this!" phrase. I know I "got" cancer, but that’s all I’m certain of. Undecided And then of course I feel guilty when I feel resentful when I hear it. I also hate the "cancer journey" phrase. I don't care about the phrase being used in relation to other people, but when someone wished me well on my "cancer journey", I wanted to snap, This this isn't a pleasure trip!" I just haven't come up with a suitable phrase myself that describes what this experience is, but to me a journey is something positive. I don't fault people for saying what they say...I know they mean well. I just wish some of these phrases didn't push my buttons so much.Wink

I am not a “crier”…I am more the”ignore it and it won’t affect you” type. I think I give off that “you are strong” vibe to people because I don’t want to give in to the reality of just how scared I really am. We all handle things in our own way and there is no one right way to get us through another day. But the whole “putting an a brave face” was getting me down and in the early days with the Covid restrictions the isolation and doing this all on my own was hard, so that’s why I started actively looking for support group info. I just had to find people who “got it” as I didn’t want to be that friend who people groan about when they see the caller ID.  As els19’s friend said, “No one wants to hear you talk about your cancer” and I was picking up that vibe from some even though they never actually came out an said it.

I do know one thing, conversing on this board has really been helpful for me. I just wish I could meet you all in person some day and give those of you who take the time to give us encouragement a great big hug! Since that’s not happening, a virtual one will have to do. I feel a lot less overwhelmed now that I found this board. Thanks again ladies! Your words truly are a life-saver.

Lyn, I had really good luck with my radiation treatments. I had some side effects, but nothing long term...so far anyway! Sure hope the same will hold true for you. There is plenty of good advice on this board that you can follow to help minimize side-effects, hopefully.

Lyn70
Posts: 60
Joined: Jan 2021

Rainbow Rita, We do have a similar story and timeline. We both have stage III but I am an A and you are a B. Going thru covid lockdown and then getting covid in February 2021 and monocolonial antibodies was lonely, boring and frightening all rolled into one package! My second chemo was delayed due to testing positive.I live alone but I have great support with two friends who were willing to shop and drop off for me. My vaccination was delayed by 90 days due to the antibodies. It was hard waiting until April for the vaccine. Everyone in my group had been vacinated while I was still isolated and mask wearing. I am still mask wearing due the the rise of the Delta variant in MO..

I see you have your mother with you. Im sure that has its benefits and challenges. A virtual hug to you for that.

 My ob oncologist didn't mention sandwich therapy to me. I am not sure why. Thank you for your kind words and your experience with radiation. I really appreciate it! There is not much experience out on this site about radiation. I searched it as a key word and found little discussion. One of the comments suggested their oncologist didn't feel the risk was worth it. That concerned me but 'long term' side effects are the least of my concerns right now. I want to prevent the cancer from reoccurring locally.

Did you have a a problem with radiation and diarrhea? I have had an issue with that since I was diagnosed with diverticulitis. I am taking a daily probiotic and have armed myself with so many anti-diarhea pills the cashier did a double take! 

I don't had a word to describe this experience other than a 'path'. I walk a mile, sometimes more, daily and I take different paths to change up the walk. I think of Robert Frost and his poem about the road that diverged in the wood and the road less traveled. I think we are on that road and many decisions lie ahead for us. 

Hugs to all my Sisters on the site for their story, information, encouragement and support! 

 

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

Lyn,

I hope your radiation treatments go smoothly. Once I committed to the recommended low fiber, bland diet (and kept Imodium handy) I was okay.

My radiation oncologist told me up front that normally women feel fine for the first 3-4 weeks of treatment, then possible worse the last 1-2 weeks of treatment. In my case, I developed inflammation during the 5th week, which went away a couple of weeks after treatment ended, just as the doctor predicted it would. It was annoying – it felt like a urinary tract infection, but that was my only real issue with radiation.

My only complaint was that my treatments coincided with the height of the tomato growing season available at the farmer's market. I love tomatoes in any form and not being able to eat them when they were at their very best was sad. As soon as I was done with treatment, I gorged myself on fresh tomatoes!

The word "radiation" is actually mentioned in about 1200 posts on this board. Many of these posts may only mention radiation in passing, while others discuss pros and cons, treatment effects, etc.

A couple that drew a fair number of responses are at https://csn.cancer.org/node/320679 and https://csn.cancer.org/node/321304

The search function on CSN is not as flexible as other sites most of us are used to. I talked about the search limitations in the FAQ and some workarounds. What I didn't emphasize there is that the keyword searching here is very specific. It looks for the exact instance of the word searched and doesn't overlook typos. It's not like a Google search where Google evaluates the term entered and presents likely hits based on similar spelling, etc.

If you want to try keyword searching again, I recommend going to the last page of the hits and working your way backwards so that you see the more recent posts. Older posts still have a lot of good information, but most of those ladies no longer post to the board.

RainbowRita's picture
RainbowRita
Posts: 51
Joined: May 2021

Like so many others, I did have diarrhea during the radiation treatments. My radiologist warned me that the diarrhea would probably start at about the 2 week point and she was right on with that estimate. It was pretty much every day during the external beam treatments after that 2 week mark, but resolved about a week after they were finished. Fortunately for me, I had no diarrhea until evening. At first it started at 10:00 pm, then 9:00, etc. Never had an issue before 7:00 pm though. I think part of the reason it only affected me in the evening was because I don't normally eat after 6:00 pm and my first meal of the day isn't until after 11:00. My external beam appointments were mid-morning and I wouldn't eat until after I got home from them. So I think having an empty stomach for a good part of the day really helped with the timing because I sure didn't want to have to worry about diarrhea in the mornings while at the hospital for treatments. Bad enough I had to contend with a full bladder.

I should have listened better to suggestions to follow the low fiber diet, but the foods on the list were all things that as a diabetic who controls blood glucose with diet and pills (no longer on insulin) are not the best to be eating. I didn't want to have high sugar spikes, so probably ate more high fiber foods than I should have. I also hated taking the dang Imodium pills. Because of Covid, I didn’t want to go directly into a store to shop yet and the only ones I found to order with my grocery items were in those plastic blister packs that I found incredibly difficult to open without destroying the pills, so there were more than a few days where I just skipped taking them because I found them too frustrating. Pretty sad, huh? I found the diarrhea easier to put up with than those darn pills!

My bedroom is only a few feet from the bathroom, but some days that was still too far. I learned that when my stomach started to gurgle that I'd better stick close to the bathroom. Aside from the diarrhea and the fatique I had some bladder spasms, but they weren't just too bad. No other side effects really, pretty much just evening diarrhea & abdominal cramps that went with it that lasted about 3 hours. I don’t know why it never occurred to me and I hadn’t read anything in the paperwork from oncology about probiotics to help minimize diarrhea (only Imodium was mentioned), but I sure wish I had thought to give it a try. One additonal suggestion, keep a spare change of clothes in your vehicle (just in case). :-)

One thing I forgot to mention, I found the fatique from the radiation not to be as pronounced as the fatique after chemo. I didn't feel like I was a hundred years old and weighed 500 lbs. like I did after a round of chemo. I just had no "ambition" to get anything accomplished. 

BluebirdOne's picture
BluebirdOne
Posts: 455
Joined: Jul 2018

I know there are many comments about radiation, but you might have to dig a bit into the threads to see them. The one caution is that some of our very early ladies had radiation long ago, less precise and targeted as is now the standard, so their side effects, especially long term were much harder than today. Please take that into consideration when you are deciding your own course of treatment. I was terrified of brachy, the procedudre itself is embarrassing, but not bad at all. My longer term (almost three years) side effects have been minor, doable, livable. I am now experiencing from chemo more foot neuropathy and a few shooting toe pains, almost three years post chemo, which is very upsetting to me. I had immediate incontinence following hysterectomy which has barely resolved as well as some bowel oddities. No doubt that the chemo, radiation took a toll on me, but I am still here so I roll with the punches. I am so forutnate so far to be NED, the after effects are just the price to still be alive. 

Maxster
Posts: 89
Joined: Apr 2020

I had 25 rounds of EBRT and found the experience to be far less difficult than chemo.  I did experience diarrhea but did keep to my high fiber diet, slow carb diet.  I got pretty tired after the first two weeks but tried to keep up some exercise during COVID.  It was after I was done that I had a really bad bout of diarrhea, so much so the rad onc had me go the the ER to make sure there was no infection.  There wasn't and things resolved themselves quickly after.  I learned that it is not uncommon for this to occur a few weeks after the last treatment.  Since then I have been ok.  I do use the dilator and hope I can stop after two years.  I guess that depends on how I am healing.  I am grateful I was able to tolerate the radiation.  This sneaky serous cancer likes to pop up again so I am praying no local recurrence will happen.

Lyn70
Posts: 60
Joined: Jan 2021

TY Rainbow, Maxster, Bluebird and cmb!

I am starting on 7/7 with my 28 external. I have not been examined internally by the radiologist. I do find the exams difficult and expect to be instructed to use a dialator to prevent future exam pain. I understand radiation causes additional vaginal atrophy. My sister gave me a large exercise ball to do my pelvic floor exercises and kiegels on, too. I am prepared for diarrhea with pills that I will cut out of the bubble pack and put into a separate bottle. The full bladder of 20 oz. of water within 20 minures of procedure sounds doable. I have been practicing not going to the bathroim 'just because' ...I bought Aquaphor cream and a handheld shower head to wash and not wipe per my radiologist. I will stay on the Fodmap low fiber diet. I am a diabetic and I agree with Rainbow that the choices are extremely limited. I feel like Girlscout I never was! 

I scheduled a lunch the second week with a fellow retiree who is a great supporter to give me a lift. We may do it weekly. Hopefully restrooms in the restaurants are close enough. Change of clothes, will do!  Great advice!

Cmb, I will click on the link you kindly sent me. 

 

 

EZLiving66's picture
EZLiving66
Posts: 1479
Joined: Oct 2015

For some reason having cancer didn't bother me much. And I don't remember ever getting a negative comment or having friends avoid me after my diagnosis.

I remember when the doctor gave me my original diagnosis and said I was probably thinking how fast could he do the surgery. I wasn't thinking that at all. Then when he did the surgery and told me it was UPSC and he wanted chemo to start ASAP, I just said "ok." After the first chemo, I got really sick and then my port was so infected it couldn't be used. After the second chemo, I just kept praying that I would die in my sleep but no such luck. After the third, I had the stroke and the chemo was stopped. I figured I'd be dead within the year, but then, I lived. Go figure, right?

I never blamed myself for having cancer. What good would that do? There are things I regret in my life, but not my lifestyle. People try to make sense of the world because that means they have some control. I don't believe we have a lot of control; certainly not over other people and also our own lives. 

I have a lot of after-effects from the chemo and the stroke but I still enjoy my life. I've explained to my friends why I sometimes can't go on trips or when I'm having a bad day and they've always been so supportive and understanding. My husband of 50 years always has my back. My motto for the last 30 years is, "It is what it is." Believing that has made it so much easier to get through any situation. If I died tomorrow I'd be ok with it. I've had a wonderful life even with the cancer. 

Love,

Eldri

Lyn70
Posts: 60
Joined: Jan 2021

 Eldri,

Your grateful outlook, despite the many setbacks you have experienced, is a joy to read. 

'It is what it is' : My cousin and I share that all the time! I find it comforting that this is your motto! 

BIG HUGS and Thank You 

 

 

 

 

Harmanygroves's picture
Harmanygroves
Posts: 232
Joined: Jun 2021

Lyn70, thinking of you as you start your treatments soon now. Wishing you all the very best. 

Regarding who gets this disease, why, how....I appreciate Rainbow Rita's nod to the "calvinistic" and judgmental "you somehow brought this on yourself" allusion there. No one, in any way whatsoever, deserves this dreadful disease! I don't care if you're obese (like me!), or chose not to have kids, or inherited all that nasty genes, there is no rationale for "deserving" it. 

I've been trying to figure out if my nonstop, always present weight issue impacted me. 

That might be putting the chicken before the egg, however.

--as a child, I was overweight. My sister was as thin as a rail. Genetics?

--I was unsuccessful with pregnancies, and had two ectopics. Endometriosis. Genetics?

--Menopause hit, and I immediately gained 20, lost 30, gained 20, lost, rinse and repeat. 

--I'm not small. I'm a size 10.5 shoe, size 16 pants, XL on top. I'm not a small woman by any means.

--I am, and can, and do, distance walk and routinely clock at least 10K a day on my fit bit, unless I'm pooping my brains out owing to radiation treatments.

I'm just kind of a large woman who got some bad genetic material. What I "think" started my endometrioid adenocarcinoma is the following--

Last year, we had a crisis event at our farm in the Pacific Northwest. The wildfires drew so near that I went into full-on, high panic mode for days.

Concurrently, owing to covid, we took in a friend of mine who lost her job, relationship, home. This friend was also recovering from a drug and alcohol lifestyle. Very stressful for us as we supported her through recovery.

My husband's ex--the mom of his children (my stepkids)--died in late October, probably of Covid, although we don't talk about it much. I was pretty close with her, as we always put the kids first (kids are nearing 40 now).

* * *

Genetically, I was primed to develop cancer, but adding high stress events in rapid succession probably exacerbated it all. I believe the weight gain and loss really pushed me to the breaking point during last Covid year too.

BluebirdOne's picture
BluebirdOne
Posts: 455
Joined: Jul 2018

Breathe. You know there is little we can do about our genetics. I come from a family of a few fatties, and many skinnies. My paternal grandmother, whom I take after, was 5 feet tall, weighed 220 most of her life, never went to a doctor, never had a pap, never had any screening tests. She was born in 1894, died 1993, 99 years of age. She lived throught the stresses of immigrating to the US, as a teenager, marrying at 16, having 5 children, losing one at age 2 in the 1918 pandemic. She lived through WW1, WW2, the depression, being isolated her entire life from her family in Poland. My dad was in WW2, but joined the army in 1939, saw active duty in the South Pacific for 4 years. All of her sons-in-law served and two of them had babies at home. Talk about stress! Those of us who take after her all gain weight easily, have larger bone structures, passed down from her to my dad to me to my son and now to my two grandkids. The kids in my family that take after my mother's side are all skinny minnies, eat anything they want, never gain weight. We were raised on the same food! Same lifestyle. Go figure. Weight has been a struggle for me most of my adult life, I weigh more now than when I gave birth, but I never even got close to her weight of 220. My dad also never had a weight problem, but he would have been considered a stocky endomorph. Many people suffer tremendous stress and do not get cancer or any other illness. I unfortunately inherited a bad body composition from my father's side, and from my mother's side, high blood pressure, extremely high cholesterol, young onset osteoarthritis. There is a history of early stroke on my mother's side which eventually killed her and my maternal grandfather, also many of the skinnies are aflicted with rheumatoid arthritis, which I was spared. It is all a crap shoot. As I tell my docs, I do the best I can do with what I have to deal with, but I can never see me weighing 115 lbs. again. LOL. So don't be too hard on yourself for things that you cannot control. What we are going through is stress enough. Most of us go through pretty rough times at dx and treatment, we can only change small things. I will never be skinny, I do my best to exercise, and eat well. That is all I can do. Take care!

xxoo

Denise 

BluebirdOne's picture
BluebirdOne
Posts: 455
Joined: Jul 2018

After surgery, while going through treatment my appetite was poor. I don't know how few calories I was eating but it wasn't much because I had the metal taste in my mouth and was just not hungry. I only lost about 5 pounds at first, (how much do your female parts weigh?) even though I was not eating and moving very little because of fatigue and being out of breath all the time. By the time I finished treatment, I think I was consuming less than 500 calories a day, I did begin to lose weight, about 18 lbs in all after three more months. My appetite is still poor compared to what I used to eat precancer, and my weight has slowly crept up so that I am just about what I was post surgery. So my metabolism slowed down probably due to inactivity, but I had to go under 500 calories a day to lose weight. When I told my doctor that she said, "well, that is what you need to do to lose and keep weight off". That was a big fat nope from me. I still only eat 1200-1300 cals a day and am gardening, walking, etc. And I don't lose weight. I am just not willing to eat a salad and a piece of toast to lose weight. Chemo does weird things to our bodies!

Denise

alicia2020
Posts: 162
Joined: Sep 2020

When I started this thread, I was hesitant because I didn't know how it would be received. But I really wanted to get that little snippet of information out there for y'all to consider. You have all responded so beautifully and honestly. I think it's amazing! There are so many women here who have so much more experience, knowledge, and wisdom than I do, and sometimes I feel like I'm not doing my part to contribute, except for being very supportive. So I'm very glad that y'all could interact and share your experiences.

Reading about your family histories makes me smile to myself at my own experience dealing with what I know I've been dealt genetically. Long before my cancer diagnosis I have said about my genes, "I got some good ones and I got some bad ones. My sister got the really nice boobs. My brain works way better than hers...I'll take it! I got some bad teeth genes. Mine are beautiful, but I've spent tens of thousands of dollars getting and keeping them that way. None of us got the naturally skinny gene.  I'm likely destined for Alzheimer's, but I got great bones and muscles. You can't have it all!"

Like one of you said recently on another thread....it's been my motto for years, too....."It is what it is!"

All we can do is try and make the best of the hand we are dealt! None of us will ever know why we got cancer. Especially for gynecological cancers, I think, it's not something we had any control over. I'm so grateful we have each other on this board.

❤️❤️❤️, Alicia 

Forherself's picture
Forherself
Posts: 566
Joined: Jan 2019

to use the discussion board, other than not swearing or being derogatory. We have some new members who want to chat, so chat.  I read the board every day and enjoy your conversations.  You would be surprised how many women read the board and are happy to see new posts.  Chat away Smile

Harmanygroves's picture
Harmanygroves
Posts: 232
Joined: Jun 2021

I got started on phys therapy today, and was thoroughly measured and checked out at the gym. The Tanita device used to assess body types has determined that I am "Solidly Built"! Ha ha! I'm not overweight. I'm not obese. I'm SOLIDLY BUILT! She showed me that yes, my fat content is high. Think of me like Haagen Daaz icecream in that regard. But, she ALSO showed me that I am a big PLUS in terms of musculature. She asked me, "What have you done to maintain this level of muscle with everything you've gone through in the last six months?"

Well, we have a farm. Also though, I've always been kind of a workaholic. I just work. That's part of the misery of not being allowed to lift more than 10-20 pounds. That's two cats to me, just nothin'!

Dak82's picture
Dak82
Posts: 82
Joined: Dec 2020

A good friend who has lived with multiple myeloma for 16 years reminds me to stay positive and take one day at a time. Both are hard for me these days. Like Rita and others I have always been the strong one and I certainly have not allowed myself to grieve because I don't feel like I'm at the point of grieving. But maybe I should be there. Even if the immunotherapy work we are looking at a slight life extension and the survivability rate afte EC moves to the lungs is pretty low. I don't like to look up the numbers but the realist in me felt perversely drawn to them.

I still don't feel like I'm seriously ill. I certainly don't have my energy and my thinking has felt fuzzy recently. But I keep working full time and getting up in the morning to walk or stretch. I have only gotten morose with my sister as I worry about my family and how they will get on. I bring in 2/3 of our income and it will vanish. Those are the thoughts that intrude on me when I let them.

Many of you expressed my thoughts on this thread. I don't dwell on the past much but I also wonder how much of a future is in front of me. I try to stay positive for my husband; he is having a rough time with this of course. I have rambled a bit here but I'm feeling a bit down tonight. I had my 2d Jemperli infusion today which makes my 4th immunotherapy treatment. We will do a scan in a few weeks to see if there has been any positive effect and I am scared to death of what we will see. I am tired and my chest hurts, making it difficult to take deep breaths. At times I want to just want to drop my guard and say how scared I am--for myself a bit but mostly for my family. Just let it all go. I think I've done that only twice in my life.

Thanks to everyone here for being good listeners and better advisors!

Deb

Fridays Child
Posts: 215
Joined: Jul 2019

Deb, none of us know what the future holds.  In 2018 I was diagnosed with a recurrence.  Scans showed a pelvic tumor that invaded my hip and also mets in both lungs. I was really surprised as I have had zero symptoms from the lung mets. We did chemo and radiation, and three years later I still have the pelvic mass but  there is no longer anything concerning in my lungs.  The statistics that are out there are often based on older data.  New treatments and new controls for side effects are being discovered every day.

We can't always be strong every day.  Be kind to yourself!  I hope your immunotherapy treatment is effective for you!

Tamlen's picture
Tamlen
Posts: 319
Joined: Jan 2018

Deb, not many months after I was diagnosed at Stage IVB in 2018, I had an argument with one of my sisters after she told me I was "not allowed" to discuss my potential demise. I told her she was sticking her head in the sand. She told me that if I didn't stay positive then I deserved to die because I gave in. I still get angry thinking about her saying that.

It has always seemed to me that we are capable and do benefit from being able to hold two truths in our minds at the same time: That we will fight the beast for as long as it makes sense to us individually AND we will make our peace with the possibility that we will not succeed. People often say to me that they can't believe how healthy and happy I seem, despite my dire diagnosis. I tell them it's because I can hold both of those thoughts as true at the same time. It drives me absolutely wild that people put out false positivity as a way to supposedly help me -- I always feel they're projecting their own fears with that, not really trying to help me.

This is my long way of saying that it strikes me that it's not an either/or proposition. You don't have to stay strong for your family or drop your guard and tell them how scared you are. You don't have to make your peace with the possibility of cancer progression or "be positive." Could it be a both/and proposition instead?

With love,
Tamlen

MAbound
Posts: 1153
Joined: Jun 2016

My husband took such good care of me during and since my treatment, but he just would not let me discuss any "what ifs".

I'm a professional worrier and I cope with that by planning and being prepared for all of the "what ifs" that pop into my head. It calms me and is a source of comfort to have a plan in place for contingencies. While I understood and respected my husband's fear, it made me more anxious to not be able to talk with him about some of the issues that would come up if treatment failed.

It's rather isolating when well-intentioned people near and dear to you shut you down when you need to talk about end-of-life issues when that possibilty is staring you in the face. We all have these fearful thoughts and concerns when we get this diagnosis and go through treatment.

I really like how you are thinking Tamlin...two truths. Our need to think about the possibility that we might die isn't us being negative; it's us being pro-active about coping with what is our reality.

alicia2020
Posts: 162
Joined: Sep 2020

It makes me sad to hear you so down. You have done such a great job of remaining positive even though you've endured very tough setbacks. I hope your positivity will return. I hope that even this morning you are feeling better.

I think it's absolutely normal for you to have those thoughts and fears. But you are still strong physically and able to engage in activities that make you feel better and I think greatly increase your chances of survival! You know those statistics are based on a compilation of research that includes a ridiculous number of variables and cases that don't necessarily mean anything for you. Your immunotherapy might just work great for you! 

You are always in my prayers! We're all pulling for you!

❤️, Alicia 

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Deb, It is very OK to let your guard down and have a bad day. Or, two or three for that matter! I hope your chest discomfort is better this morning and brings you back up. Your strength may also be your weakness.... Might be time to lean on your family and stop being the strong one all the time. And, I don't say this lightly.... kind of like the pot and kettle thing for me. I think we may not give our family member enough credit sometimes. They may be stronger than you think.

As you know, you are safe here. Please lean on us. We all will be here through your good and bad days. 

Love and Hugs,

Cindi

Afoste3
Posts: 23
Joined: Jun 2020

To echo Cindi, I think if you are used to being the person who is always strong, you don't really know what your family is able to do to support you.  I'm like that too, and I'm trying to change.  The way I think about it is I'm giving the people around me the opportunity to help and comfort me too, which they all want to do! It's hard to be vulnerable especially if you're not used to doing that.  But something to think about even though it is not comfortable :)

I'm also not sure how you feel about seeing a therapist, but that has always helped me.  Since they are more neutral, the focus is just on you and you don't have all the "baggage" that comes with talking with famly.  I assume your cancer center has referrals if that's something you'd like to try.

I also hope you are feeling better today.  It's not realistic to feel positive all the time when you are dealing with something massive and scary, but I hope this down period passes soon.

Anne-Marie

Forherself's picture
Forherself
Posts: 566
Joined: Jan 2019

like you are still being the strong one. Going to that place where you ponder your mortality is normal when diagnosed with cancer.  But you are still living and I hope your visit is short to that place and you go back to enjoying your days.  And for me, the unkown is so hard to deal with.  NO one knows.  I do think it helps to talk about your fears and it is a very safe place here.   We are all here for you, and are cheering for you.  

Sue

Harmanygroves's picture
Harmanygroves
Posts: 232
Joined: Jun 2021

Come on in, the water's...deep! I'm very moved and so glad that no one here seems afraid to express not just joys, but these other thoughts.

Deb, your support network here is amazing, and as was stated above, you are well within your rights to have hard days. 

Look at how athletic and motivated you are. And you are so supportive of others here. I'm glad you can let down your guard and share that you're scared, because quite honestly, as Tam mentioned, we are all having to live with competing truths.

I'm scared, and I'm afraid that this EC is going to take me out when I least expect it versus I don't want to be scared, bc if I am, could that become a self-fulfilling prophecy, and then I'll become weaker?

I want to share with those who love me my deepest fears. I want to cry and be held but If I share my fears and break down, I will scare them and change the way we are "used to" interacting. 

I want to research and find all the information, and know it all, as it could help me and potentially save me, versus I need to get my head out of this computer and have a ife.

* * *

For me, today, it was "I want to tell my sister how lame and unsupportive she's been, and that our parents didn't want her around when they died because she would have made an unsupportive scene, and not been there. She doesn't know how to say or do the right thing."

What I said, "I look forward to seeing you when you visit in August. Perhaps you should rent your own car this time."

(she's so used to be driven around and mollycoddled).

Deb, and all of you, thanks for being so open and wonderful.

 

 

Lyn70
Posts: 60
Joined: Jan 2021

Deb, 

Know you are heard and loved by your fellow sisters on this site. I will pray immunotherapy works. 

RainbowRita's picture
RainbowRita
Posts: 51
Joined: May 2021

I am continuously amazed at the depth of compassion so many of you who post have for others who are afraid, overwhelmed or in pain. I know that it isn't just me who has found comfort in your words. The wisdom so many of your express so eloquently is also something I appreciate when I come here to see what thoughts you share. 

Tamlen's comments about "holding two truths in our minds" is just so apt. Thanks for sharing that. :-)

I hope Deb, that today is a better day for you. We all have our down days, and I think it helps a lot to just share with others who understand exactly what you are going through. No one likes to have their pain minimized by people who have absolutely no clue what you are going through. Although none of us wants to be a part of this "cancer club", I am glad to be a part of this particular one on this discussion board. 

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