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Recently diagnosed with Endometrial cancer

misstaylor84's picture
misstaylor84
Posts: 18
Joined: Aug 2021

June 27 I went in for a hysteroscopy with D&C to get to the bottom of unexplained bleeding I had had since last October. 2 polyps were removed and me and my husband were hopeful that this would increase our fertility chances and I would finally be able to get pregnant after years of infertility.

Yesterday morning my doctor called with the pathology results. The polyps were clear but my endometrium is cancerous. She said she thinks it was caught early and said it's a grade 1. She's setting me up with a gynecologist oncologist but told me the standard of care is a complete hysterectomy where they will take out my uterus, ovaries, fallopian tubes and cervix.

Me and my husband are devastated, scared, anxious, and just defeated. I am 37, in good health, and wanted more than anything to have the chance to be a mom. I know adoption is an option but it's not the same. 

I am worried that this hysterectomy is going to wreak havoc on my mental state because I felt like a defective woman when my body failed to do what it was supposed to and I enjoy sex! I am worried that I will have no sex drive or it won't feel the same. I'm worried about having another surgery so close to the last one. I'm still recovering from the hysteroscopy. 

My husband has been amazing with my hysteroscopy and the news of cancer hit him hard. How do you deal with feeling like all of this is just so unfair and a horrible, mean trick? How do I accept this?

I also found out 2 days after surgery I had been laid off from my job and will probably lose the health insurance I had. I think right now isn't the best time to think about looking for a new job where I'm sure I'll be down for a bit recovering and I don't know what the treatment plan is yet.

Harmanygroves's picture
Harmanygroves
Posts: 215
Joined: Jun 2021

Mss Tayler '84 --

What a horrible situation you are facing. I wish I could wave a wand for you, but right now, you're dealing with so many hard things. I was dealt a very sad hand also, and never had my own children. I do have two stepchildren. I think that it's very disappointing for many of us who can't even have one baby. It was for me. I can't gloss it over. It's hard. I think you may need to get someone for some counselling, and I strongly suggest you try to find a resource for that.

Ugh, and just lost a job? The only bright lining here is that things can only get better for you. You did so well finding your way here! That's the good news.

I was also concerned about having the hysteroscopy / biopsies / polypectomy and then having the other surgery (total hysterectomy, etc.) so close, but because both were laparoscopic, it made it much easier. As much as I've complained about my first surgeon on here, he did a robotic laparoscopic-assisted surgery, and it's an easier recovery than an "open" surgery (a laparotomy).

Sending you love, and great compassion. You are in the hardest part of things right now. We will all be here for you. 

(edited to fix spelling of 'compassion,' but I wanted to note that I was delighted that Forherself pointed out you might be able to keep the uterus, at least for a while. I want to add that I have a friend in her late 30s who recently froze many of her eggs, and another lady will carry the child for her. I think it's also worth considering!)

Deb

Forherself's picture
Forherself
Posts: 557
Joined: Jan 2019

So sorry to hear about. your diagnosis. BUT don't give up hope yet.  Based on what you have posted, there is a possiblity that you can keep your uterus.   

https://pubmed.ncbi.nlm.nih.gov/29306233/

If you have had trouble getting pregnant you might want different things.  But Grade 1 is the least aggressive so things are pretty up in the air for you right now.   I hope you have a very good oncology gynecologist who can make a good plan for you.  

misstaylor84's picture
misstaylor84
Posts: 18
Joined: Aug 2021

Found out what the name of my cancer is. It's endometrial adenocarcinoma, grade 1. My OBGYN put me on 40mg Megestrol, which I have read has been very beneficial for treating this cancer. I am still just waiting to get an appointment with the gyn oncologist. I'm applying for Medicaid tomorrow. I have also been reading about the process for freezing eggs and don't think that would be an option because we have no reproductive endocrinologists anywhere near us and it said it requires multiple trips. 

Right now there's so much to think about.

Harmanygroves's picture
Harmanygroves
Posts: 215
Joined: Jun 2021

You sound like a very organized person. I think it's great that you are applying for some assistance.

No one wants any type of cancer, but if you must have cancer--endometrioid adenocarcinoma grade 1 is probably the best one to have. It's the kind I have, and I was Grade 1, Stage 1 B but have a high risk of recurrence because of some other factors.

Many of the ladies here have much more aggressive cancers---in terms of "type" of cancer and also grade. Grade 1 is slow-growing. It's not a good thing, but you are only 37, so I have to admit I'm relieved it's Grade 1. Whew. 

Okay, I'm sure you have a lot going on, just wanted to check back in and wish you the best of luck. There is a really GREAT FAQ page that is the top thread here. You may want to look through that? 

Deb XXOO

Forherself's picture
Forherself
Posts: 557
Joined: Jan 2019

alright.  But you don't know your stage yet.  Early stage Type 1 Cancers can require no treatment other than surgery.  I never got pregnant and we adopted two babies.  They are our children.   You do have a lot to think about but don't assume the worst.   

BluebirdOne's picture
BluebirdOne
Posts: 435
Joined: Jul 2018

are doing clinical trials for fertility preservation.  https://mdanderson.elsevierpure.com/en/publications/fertility-sparing-treatment-in-early-endometrial-cancer-current-s

Fertility-sparing treatment predominantly involves the use of oral progestins and levonorgestrel-releasing intrauterine devices, which have been shown to be feasible and safe in women with early stage EC and minimal or no myometrial invasion. However, data on the efficacy and safety of conservative management strategies are primarily based on retrospective studies. Randomized clinical trials in younger women and high-risk obese patients are currently underway. Here, we have presented a comprehensive review of the current literature on conservative, fertility-sparing approaches, defining the optimal candidates and evaluating tumor characteristics, reproductive and oncologic outcomes, and ongoing clinical trials. We have also summarized current guidelines and recommendations based on the published

She is one of the co-authors of this article. You might want to consider getting a 2nd opinion from her as she seems to be doing potentially game changing research on this. 

Harmanygroves's picture
Harmanygroves
Posts: 215
Joined: Jun 2021

I was doing some scratching around in the general cancer guidelines and treatment protocols, but very surface level. It was also mentioned that lifestyle choices / weight management are important. I think keeping weight down and staying away from processed foods is key for most of us with cancer (side note). 

BluebirdOne's picture
BluebirdOne
Posts: 435
Joined: Jul 2018

There is a large group of them on a list so easy to follow. They are all over the world and the US, many from MDA, MSK, etc. and NCCN cancer centers. They will post about protocols, clinical trials, research, and about the annual conferences where new research is presented. There is a podcast by Dr. Pedro Ramirez (MDA) called IJGC Podcast, where they discuss all things gynecological cancer. (very nerdy, I admit, but having cancer makes you research like a nerd) The podcast titled "Phase II Trial of IUD in Conservative Management of uterine cancer" with Dr. Westin is available to all, was posted 12 days ago, so is very recent information. The other topics are of varying interest. Sometimes the podcasts that pertain to me (I don't listen to ovarian or cervical cancer pods) are a bit wonky, but they give an overview of what the leading GO are doing, thinking, researching, etc. I just remembered that she had a podcast on this subject as well, as I don't usually pay attention to pods that don't involve my situation. 

Denise 

Harmanygroves's picture
Harmanygroves
Posts: 215
Joined: Jun 2021

And oh, yes. Yes, having uterine cancer does make one research like a nerd.

My current fixations today involve the hormonal issues that made my endometrial adenocarcinoma blossom forth. I have a very "secondary ed" understanding of it. These are factoids I think are correct, but may not be:

a. many post menopausal women lack progesterin, but have an overabundance of estrogen.

b. estrogen can be "fed" by excess body fat, or rather, body fat increases estrogen in the body, which causes endometrial adenocarcinoma (in part).

c. endometrial tissue growth continues, but isn't sloughed off via menstrual cycle following menopause. Female body out of control! Cue the "tissue growth" music!

d. endometrial adenocarcinoma shows some genetic mutations, which I've got in paperwork--and I don't know what to do about them yet. This bothers me. I hate knowing that I don't know, and knowing that I don't know how to figure it out--in part bc I ditched my first gyn onc, who didn't answer my questions anyway (I'm now laughing, kind of).

* * *

I am grateful for every woman in here. I learn from every single person. Today I'm at the Oregon coast, and it's a beautiful day. I walked 9K steps, and had about an hour of "active minutes." I've decided I'm going to eliminate some fruit in exchange for more vegetables. 

Denise, you're wonderful!

love,

Deb

Forherself's picture
Forherself
Posts: 557
Joined: Jan 2019

produces a substance that changes into estrogen.   Estrogen does not cause endometrial cancer or every overweight woman would have endometrial cancer and they don't.  Most cancers are random mutations which our body deals with often.  When the mutation involves the mechanisms that stop. cancer cells, then cancer cells proliferate.  The distribution of cancer is quite random across the world.  Some things increase your likelihood, but they do not cause cancer.  Mutations in the cancer fighting genes cause cancer.  I have not read that endometrial tissue continues to grow after menopause, but some conditions might cause that.  Do you remember where you read that?  Gyneoncologists go to University for about 14 years to gain the expertise to treat cancer.  It will take awhile for you to understand it all.  Don't beat yourself up.

 

Harmanygroves's picture
Harmanygroves
Posts: 215
Joined: Jun 2021

I'm working at learning, all the time. Your explanation was very helpful.

I do not recall where I read that endometrial tissue continues to grow after menopause, but I know that when menstruation occurs, that tissue is sloughed out. I think I read somewhere that some bodies continue to produce endometrial tissue...? Not sure. It may be a misunderstanding of the mechanics of how my cancer occurred. 

Seriously, three general anesthesias in the last seven months have not done my intellectual abilities any favors! 

* * *

I'm in a lot of pain tonight. Radiological oncologist appointment tomorrow morning. I really need to get in to see someone faster than Aug 31st, my next appointment. I think radiologist will be telling me to start using the dilators. I think that's what the appointment is about tomorrow. Sigh. Ugh. 

BluebirdOne's picture
BluebirdOne
Posts: 435
Joined: Jul 2018

When we share our information we all win. 

Denise 

misstaylor84's picture
misstaylor84
Posts: 18
Joined: Aug 2021

That was fast. My consult is scheduled for the 10th at 10:15. At least we have the first appointment date.

Harmanygroves's picture
Harmanygroves
Posts: 215
Joined: Jun 2021

Well done. The waiting is the hardest part, as Tom Petty always said. Try to take it one or two steps at a time, and do things that make you feel happy (between the moments of stress). This is the hard part. 

misstaylor84's picture
misstaylor84
Posts: 18
Joined: Aug 2021

I am going on the 19th for an MRI and depending on those results, that I won't know until the 30th, will dictate which treatment route we can take. She isn't against doing the fertility sparing treatment which will be continuing taking Megesterol and getting a hormonal IUD put in. 3 months after the start I will have a biopsy done to see where we stand, then at 6 months another hysteroscopy and D&C, a new IUD put in, then I'm guessing a biopsy at 9 months, then another hysteroscopy and D&C at 12 months. 

If I'm cancer-free for 12 months following this 12 months of treatment she will refer me to a reproductive endocrinologist. The only one is in Little Rock. 

I have been reading about how painful the IUD is and I'm sure the biopsy is just going to be a fun little experience too. I am not looking forward to any of this pain at all, and 2 more hysteroscopies. I seem to have taken longer to recover than everything I read about hysteroscopies because there is no way I could have returned to my normal activities 24 hours after. I still had tender, bruised areas 2 weeks after. But I research everything because I hate surprises and I have to know the worst and I plan for the worst. I have never had an MRI so am nervous about how panicky that might make me feel. 

I am still trying to get health insurance and holding off on looking for a job until after we find out what our next steps are. I am trying to take everything day by day but am still scared and anxious.

Anyone else decide to go the route I'm wanting to go to save fertility? How bad is the IUD and biopsy? 

Harmanygroves's picture
Harmanygroves
Posts: 215
Joined: Jun 2021

I started losing pregnancies around your age, and I sincerely hope you do better than I did. Just gather all the information that you can, and if I can give you any advice, it would be to keep positive.

I lost a few years in my late thirties feeling very depressed about not being able to have children, and I regret not pursuing counseling. Maybe it would be helpful for you and even your husband too to find someone to talk to as you go through this very challenging time.

Love,

Deb

misstaylor84's picture
misstaylor84
Posts: 18
Joined: Aug 2021

I am trying to but the more I know, the more scared I get. Yesterday was a terrible day. I just couldn't handle anything, didn't want to be near anyone, and just wanted to either cry or burn something down lol. I got a letter from the unemployment office and apparently someone told them I had quit, when in fact I was laid off. They wanted to know why I had lied. That, and some other personal things popped up, and I simply couldn't take anything else. I definitely think talking to a counselor will be a good thing for both of us. I am up at 4am because I simply can't sleep. Too worried about the MRI and then everything to come after that. So much pain. I feel like I have endured enough pain for 10 people and honestly I am pissed off. Why did this happen to me? I look at obese women I know who have diabetes and they still managed to easily get pregnant. For years I fought to get my sugar down, my weight down, I tried charting my temps, every other thing that was recommended and nothing worked. 

Now I hear "Well it's not a big deal, just get a hysterectomy" from women who have already had several kids. I feel like punching them in the face and screaming that of course it seems so easy to someone who was able to have kids. If I already had kids then I probably would do the hysterectomy just to save myself more pain down the road. 

I hate this hand I've been dealt. Absolutely hate this. 

My husband means well and has been a huge help when I was recovering from my hysteroscopy but he won't let me clean our house. We've been living with my parents and brother because our house has mold in the kitchen and needs a lot of work currently. But just to sit and watch TV all day without having anything to do is making me go stir crazy. I told him I have cancer but it's not going to kill me to do stuff around the house. I want to get it fixed so I can go back home. We are still trying to get health insurance but since I was laid off we've been struggling. He's going to take a local job and a pay cut so he can be here for my appointments. We may end up and lose our car because we can't afford the payments now but we need it because all my appointments will be 2 hours away in Little Rock. Now the delay with unemployment.

It's just too much. 

Harmanygroves's picture
Harmanygroves
Posts: 215
Joined: Jun 2021

 

I'm going to do what I did for myself----I'm going to try to give you heartfelt advice. You can crumple this up and throw it in the virtual trash if you like, but you're young and I'm worried about you. First, my story, then you. 

After my hysteroscopy, I was doing dishes, folding clothes, and dealing with NO electricity during an ice storm. After four days of cooking (with a cast iron skillet outside, in freezing temps), I got into my car and drove to the Oregon coast where I have a rental house with electricity and heat. I was at that point having a total breakdown, and as you can guess, needed a shower. My recovery was non existant because of the Oregon storm. Listening to the trees crash down as I sat in pain watching was so miserable.......but back to you, Miss <3

You need to do something other than watch TV, for sure. First move: contact your old job and calmly talk to them, and plead your case. You need them to work with you.

Also, you need to take good care of yourself, even if it's a short walk and eight glasses of water per day. I get the emotional piece, do I ever. But now is the time to be healthy.

Pull yourself away from this anger and sadness and set some goals fast. Do it for yourself. Do it for your husband. You can, and you must. 

Love,

Deb

LisaPizza's picture
LisaPizza
Posts: 343
Joined: Feb 2018

Just a tip for the MRI - close your eyes before you go I'm, and don't open them until you come out - so you never see the walls around you.  I had an MRI/MRA of head/neck that took a while, and that helped.

cmb's picture
cmb
Posts: 719
Joined: Jan 2018

Deb has given you some good suggestions on moving forward right now. I just wanted to add that my treatment center had a number of services for cancer patients and survivors. I only took advantage of the exercise classes while I was in treatment, but they offered many other services including counseling, social work services (to help with insurance/Medicaid matters, financial assistance, support groups, etc.) These services were free.

I encourage you to reach out to your doctor's office to see if your hospital/treatment center offers similar services. A cancer diagnosis can throw anyone off kilter, but you may have more help available than you realize. And be sure to tell your doctor how you're feeling. The doctor may be able to prescribe an anti-anxiety medication that would help you at this time.

RainbowRita's picture
RainbowRita
Posts: 46
Joined: May 2021

You have a lot to deal with these days MissTaylor84. ANYBODY would feel overwhelmed and anxious with all that you have to deal with in such a short amount of time. I had my own set of issues at the time of my own diagnosis, so I get that feeling of wanting to escape for awhile. I remember one time when I was getting overwhelmed of trying to figure everything out and looked down and noticed that my hands were shaking. Which was shocking in and of itself to me as I am normally a pretty calm and pragmatic person. I can only imagine that the stress you are under right now must be enormous.

As usual, the wonderful women on this board have shared with you some good advice. I don't have a lot to add in that regard. I will chime in with LisaPizza to say that I shut my eyes before I entered the MRI and kept them closed pretty much the entire time and I think that really helped. I don't have huge issues with claustrophobia, but do get a bit nervous about stuff like that.

When the nurse called to set up my appointment, she asked if I was claustrophobic and I told her that I thought I'd be OK. I think they would have given me something for that if I had asked. However, I had to take meclizine for my BPPV (vertigo) and so couldn't take anti-anxiety med in addition to that. Even so, I had trouble with the dang vertigo and it took a few tries until they got my head elevated enough for the room to stop spinning. There was not much "wiggle room" in regards to how much they could elevate my head, but did manage to get an extra pillow for me and then I was OK. (My vertigo gets set off if lying too flat on my back) Didn't think I could manage to hold perfectly still if I felt like vomiting. But I got it done. A lot of people have anxiety about MRIs, so they should be able to prescribe you something to make it easier for you.

As with most things I've had to deal with in regards to cancer treatments, my worry and imagined issues about was to come was usually worse than the actual treatment. Just be sure to let those who can help you know that you are having trouble and allow them to help you find ways to cope. There is probably more help available for you than you realize.

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