Hope to be a survivor soon

CJM, you can read many of my posts about my battle with recurrence on the vaginal wall. Briefly, I had UPSC,1A back in 2016. Surgery, 4 brackys, 3 carbol/toxol. One year later, 2018, lesion on vaginal wall: cisplatin while having 5 weeks pelvic rads and 4 more brackys! One year later, 2019, mass in vagina - surgery to clear - mostly dried blood but some upsc!!! Oncologist was not hopeful it would ever be gone but latest CT showed all clear there! Finally! I do however have 3 lymph nodes to watch - I am scanned every 3 months but did clear that vaginal wall/cuff which is not easy. SO! Sounds like you are doing everything good to get ready for new treatment. After all my treatments, I am OK with all function but do have weak bladder control and have to wear Depends but if I go often and do not wait, am OK. At 80 years, I can deal with that. 

I hope this does not depress you to see the battle you may need to wage, but can report that today I feel fine, live life to the fullest as one can in this virus time, and feel good about current treatment, Megace/Tamofin switch every 3 weeks to **** lymph node growth. Wishing you the best to come.

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Hi CJM, I know it's not an answer to the question you asked, but I too think a second opinion as to treatment would be an excellent step at this point, if you haven't already done so.  I obtained second opinions on both treatment and pathology when I was diagnosed with stage 1C, grade 2, endometrial adenocarcinoma in 1999, and doing so reassured me that I could be confident  that I knew exactly what I was dealing with.  (Since the time of my diagnosis, the staging system has been changed, and under the current system, I would be stage 1B.)  Given your recent recurrence, if I were you, I would also get a second pathology review of all tissue samples, both original and recent. 

Welcome and best of luck to you!

Hello, CJM.  I am glad you found us and the ladies here really are terrific.  I am sorry to hear you find yourself having to go through more treatment so soon.  It sounds like you are taking some positive steps with your diet and training your bladder.  Though it was for the intitial dx, I also had IMRT and that is very helpful in trying to mitigate collateral damage as well.  I am a big fan of probiotics as I think it can have an impact on radiation side effects as well. 

I hope we have not scared you off.  We would really would like to hear more and help as we can.  

Our posts were based on what information we had to go on from your initial post and that left us with a lot of room for concerns and questions. Radiation therapy generally scared the bejeebers out of most of us before we submitted to it because of the potential for life altering and/or late occuring side effects. Our urging for second opinions comes from our personal fears about it because if there are other options, you really want to understand them before going down any particular path.

Cancer puts us in the position of having to make these decisions we really aren't qualified to make, but it's in our own best interest to educate ourselves as best we can because we have no choice but to make them. You don't have to defend this decision to us. We value what you share because we can all learn from it. I hope you will continue to post here to tell us how things are going with you. You'll never know who that may help. Your confidence in what you have decided is what matters most and it sounds like you have that with your current doctor. In the end, all decisions invlove risk and are a leap of faith to submit to.

I had external radiation as part of my initial treatment for Stage 3B uterine carcinosarcoma. Although a CT-scan after chemo did not show any sign of cancer, my gynecological oncologist and medical oncologist both urged me to have radiation as well, given the aggressiveness of my type of cancer. After much thought and further discussion with my doctors, including the radiation oncologist, I went ahead with 25 external radiation treatments for my pelvis area to reduce the chance of recurrence to this area.

Each of us have different reactions to the various treatments we receive, but for me, radiation was much easier than chemo. To help control diarrhea, I followed the bland, low fiber diet that was recommended while I was doing the radiation sessions. I did develop some bladder inflammation during week 4 of the treatments, but this disappeared about 2 weeks after treatments stopped, as my doctor had predicted. As far as I know, I don't have any residual side effects from radiation. I did not, however have brachytherapy.

I didn't find this site until after I was done with treatment, but like you, I did research when I was first diagnosed and was comfortable with the approach and therapies recommended by my three doctors (gynecological oncologist, medical oncologist and radiation oncologist). So I did not seek a second opinion either.

All of us make the best decisions we can based on the type of cancer we have, the stage, our physical condition, research and faith we have in those treating us.  For me I had faith in my family which includes a research oncologist.  I do not know if I would have found the information they shared with me on my own.  I was in shock and denial most of the time.  I made the decisions I felt best for my cancer.  I learned along the way that everyone has a different twist to their cancer and different reactions to treatment.  It would be nice if there were on surefire plan everyone could follow but there is not.  It sounds like you have a good relationslhip with your gyn onc and trust his opinion.  I think that is wonderful.  So much of our success is based on our confidence and belief that what we are doing is best for us.  I hope all goes well for you.  I had some effects from the radiation but at this point they have ended.  I had my last one in April.  Good luck to you!

CJM1948 said:

Seattle

Thank you for your message! It is nice to talk with someone else from Seattle! I just finished IMRT treatment #2 and am taking a probiotic, got off all dairy, and changed to a low fiber diet - so I hope I will weather the treatments w/o too much damage. Do you also have endometroid adenocarcinoma? My relapse was a total shock to me and my oncology team. Have you relaped (I hope not). Please let me know how you are doing. Going through all this while the pandemic is still so widespread here is tough. My son does COVID testing so seeing him is not happening, though I can see my daughter and have a wonderful husband. He is a blessing. I hope you are doing well!  

You can read my blog.  I use the blog because I think it is just a llittle more private.  If. you click on my name and read the blog.   I was diagnosed with an early form of endometrioid called EIN.  Then. a few days before my surgery they called and told me I had serous endometrial intraepitheilial carcinoma.   It was a shocking day for me.  I am an RN, so knew the difference between the two.  Mine was like a cancer in situ, but serous in situ can spread.  So I had. my. surgery, and they found no other malignant cells anywhere.  I could have been even a stage 4 with this serous.  I was given the option of treatment or no treatment.  But the studies show that my cancer could recur even with treatment.  I was stage 1A with no malignancy in the hysterectomy specimen.  That will be 2 years ago on July 16.   I chose no treatment.  I have not had a recurrence.  July 16 I have my follow up appointment.   That will be two years NED.  That means no evidence of disease.  I hope all goes well with your radiation treatment and you will be NED soon too.  

Hi, CJM. While I can't offer advice, I want to send you a virtual hug and encouragement for your treatment.  I was dx with Stage 1a - Grade 2 endometriod carcinoma, NOS, a few months back.  I'm getting ready for another 3-month checkup and recurrence is never too far from my mind, so my thoughts and prayers are with you.  

My doctors originally thought from the biopsy it was poorly differentiated endometrial carcinoma with 50% clear cell solid variant and 50% endometriod, which was hard to hear, but after the TAHBSO they said G2 and "pseudo clear cell changes."  My gyn-onc said we could do brachy or "wait and watch" and recommended "wait and watch," which I did, so each appt comes with a little trepidation.  

Did your gyn-onc give you similar options?  Did you have a high Ki-67 index or significant invasion?  My Ki-67 was 25%, Napsin A stain was negative, and invasion was 12% of 26mm.  I worry whether I made the right decision.  Any advice?  Did you have symptoms with the recurrence? Sorry for so many questions.  Never imagined being on a cancer board, but at least it's filled with smart and caring women willing to support one another.  What a blessing!  Anyway, I'll be eager to read your updates and hear how you're doing.  ((HUGS))

Forherself said:

Welcome Happy Warrior

We are always wishing you didn't have to be here but are happy to walk this path with you.   I will answer you because I also chose no treatment, which makes most women on this site nervous.   I was initially diagnosed with an early endometriod pathology, positive for KI67 and P53.  When the slides were sent to my gyneocologist the pathologist there changed the diagnosis to serous endometrial intrapithelial carcinoma.  Big change.  It is cancer in situ but serous cancer can spread at that stage.  After surgery i was found to have no other malignancy in the hysterectomy specimen.  I was given the option of treatment or no treatment.  One reason being she said I could recur even if I had treatment.  I am going for my two year check in 2 weeks.   I am NED, no evdience of disease.  I don't have any symptoms that worry me right now.  You will find women who don't recur gradually drift away from this forum.  Women do come back and  report 5 and 10 year survival.   The unkown aspects of this disease are really hard. Good luck on your check up.   

Thank you, Forherself.  I appreciate that.  I'm glad your decision has worked out well and that you're quickly approaching 2 years -- that's terrific!  When I was told it was G3 and 50% clear cell, it was overwhelming, given what I found online.  When it got downgraded, it was great news -- but I had a hard time making the transition to wrapping my mind around "wait and watch" after preparing for adjuvant treatment of chemo and radiation.  Seeing the Infusion Suite time blocked off on my first visit made it seem very real.  I welcome the positive turn of events, but worry whether we really know how this G2 cancer that originally looked so bad will behave moving forward.  I go back 7/17 and hopefully will get continued good news.  The issue is this spot on my spine the pathology report cited as "metastatic bone disease is not entirely excluded, but considered unlikely, given absence of additional osseous findings."  I'm hoping things are stable and that it really is nothing to worry about.  Anyway, thanks for reaching out and sharing your experience -- it's comforting and I appreciate it.  Eager to celebrate your official Year 2 soon!

Forherself said:

metastatic bone disease not entirely

I would say the pathologist HAS to say that beucase there is always that one rare case once reported.  They can't say absolutely.  I hope your news is good.  I had a growth on my back too.  I had back surgery in October.  But I had an old horse fall injury and they called the grown panus which is scar tissue.  If you are feeling worried about your choice you could seek a second opinion.  Doctors do not mind this and it might help settle your mind.

Appreciate the suggestion, Forherself.  Seems silly to not just jump for joy and embrace positive news, but the emotional rollercoaster ride gave me whiplash.  I was with my Dad at UofMich when he got his terminal CA dx back in 2016.  He lasted 6 months after that shocking discovery.  Hearing my own original dx 3 years later was so difficult (as so many of you can unfortunately relate) that i guess I'm afraid to let my guard down now only to get another sucker punch.  

I'm so glad your growth had a benign explanation and hope the surgery was successful for you.