Weight, Exercise, and Gynecological Cancers

Lyn70 said:

Similar story

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! 

 

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 5^th 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.

Lyn70 said:

Puddle description really hits home with me.

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. 

 

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.  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.

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.

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.

Maxster said:

Radiation experience

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.

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. 

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.

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

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'!

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

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

Dak82 said:

Stay positive

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

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!