Endometrial Cancer - IIIb - grade 1
I'm 67. After a completely hysterectomy (they took the Fallopian tubes, too), doing well--minus the cancer, of course. (My current CA125 is 15.5, down from 24.9 pre-surgery.)
I'm hoping y'all will give me your opinions--pro and/or con--as regards chemotherapy and/or radiation. Given the prognosis even if I pursue such treatments--including lymphedema--should I even bother with chemo or EBRT/Brachy?
Thank you in advance.
Comments
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egrrl, welcome to a place of support and love. I am sorry you had to find us, but good women and their loved ones here. Grade 1 is 'better' but your Stage is higher.
Hopefully you are working with a gynecologic oncologist who will make a plan for you but you will always have the option to choose whether or not you want to do something or anything. Treatment, for most, is doable. Meaning most people can tolerate it with manageable side effects.
Ask the doctors questions to help you make the decision that is best for you. Hugs dear one and please let us know if you have any questions.
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P.S. - I wanted to add that my lymphedema was caused by the number of lymph nodes taken during my surgery, not the treatment. It can happen at any time, right away or years later. I hate to say it, but 'it depends'.
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Thank you so much for your response. I can't tell you how much I appreciate your input.
I have an oncologist who's referred me to a hematologist and a radiologist. I've spent a month reading everything I can get my hands on regarding treatments and side effects. I'm sure some of my hesitation comes from having watched my step-father die in slow motion--after years of chemo and EBRT treatments for prostate cancer, he died of sepsis. Did treatment prolong his life? Yes. Was it a life of any quality? No. Not to put too fine a point on it, but he spent years in his recliner. That's not for me. I've always valued quality of life over quantity, and that hasn't changed with this diagnosis.
If you don't mind my asking: how many lymph nodes did they take during your surgery?
As for "it depends...." That's the kicker, isn't it. (sigh)
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I had stage 3a, grade 2. I had chemo followed by 25 external radiation treatments. The radiologist said the radiation may or may not help prevent a recurrence, it's a bit of a gray area. I'm sure there's more research since then (2018), maybe it's clearer now.
Also, external vs internal (or both) depends not just on stage, but other factors, like involvement in the cervix.
I have no peripheral neuropathy after the chemo, but my magnesium level always runs slightly low now.
I do have long terms side effects from the radiation. I have a BM probably 3 times before noon on most days, and not infrequently in the afternoon also.
Annoying? For sure. Would I do it again? Yes. I needed to feel like I did everything I could while a cure was still possible.
But unfortunately the information is not cut and dried. I think my radiologist would have been ok with it if I had said no.
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I'm so glad I found this board--in one day, I've gathered more useful information than in months of reading NIH abstracts, white papers, and website after website specific to the drugs and methodologies.
I was fortunate in that the lymph nodes (they removed 6), and the margins were all negative. The only remaining cancer they're aware of are in the vagina and the near the parametric. Still--IIIb is IIIb.
LisaPizza...thank you so much for your reply. I hope you continue to be healthy, and that your body continues to heal.
Cheers,
E.G.
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Welcome. Sorry to hear you are dealing with this. First, please know so many studies are old. I try and not read anything over about 7 years old. They didn't used to stage everyone and so women who were thought to be one stage were actually higher, which made results look worse. They also included serous with endometrioid which made the results worse for endometrioid. You have low grade cells. That is good. We have a member ZsaZsa1 who had serous 3c and is 4 years out after treatment too. She stops in every once in awhile. I think if you explain your wishes to your gynecological oncologist, you can come up with a plan. There are tumor boards too, that can give you additional opinions on your treatment. Your fathers experience may not be yours. We like to say, accurately, that we are all a statistic of ONE.
Sue
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EG, you can ask ANYTHING, we are all pretty open with each other - it is all about support. Your question on 'how many lymph nodes?' the answer is "I don't know". I'll be honest, I don't know the answer except to say "a lot". The surgery was a radical/complete hysterectomy of uterus plus everything else of the organs, but as for lymph nodes the oncologist I have said, "wow - you had a hysterectomy plus!" which tells me it was A LOT. It is probably why I developed lymphedema, but I wouldn't change a thing.
As Sue noted, we really are a statistic of one. None of us know just how each one of us will respond to treatment, and why research has moved treatment based on the molecular level. Things have changed so much in the last 5 years, and it will continue to change.
Please ask us anything - the NIH writing can be a bit "dry" :) so you will find a lot of real life answers.
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Welcome, E.G. I had 30 lymph nodes removed when I had my radical hysterectomy. Following surgery, I had both external beam radiation and brachytherapy and have not experienced any lymphedema so far. That was back in 1999, when brachytherapy was done as a hospital in-patient in isolation for a couple of days. Things sure have changed over the years!
I'm very sorry about your step-father's experience post-treatment. As Sue said above, we're all a statistic of one. There are risks and benefits to any treatment or medication. I had a friend die as a result of a bad reaction to blood pressure medication at age 47. I had another friend die from complications of cancer surgery at 54. I also have a friend who was diagnosed with stage 4, grade 3, endometrial cancer in 2017, and just passed the five-year mark in April with no evidence of disease. Go figure, right?
Wishing you all the best.
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MoeKay--
I'm so sorry for your losses. Losing someone to a reaction to. a med--I lost a friend many years ago to a combination of meds...he was young and healthy (save a pulled muscle) one day, and a footnoted statistic the next. All I could manage at the time was "This is so STUPID!" Well...it certainly contributed to my resistance to taking OTC meds and most prescription drugs.
I'd never heard "we're all a statistic of one" until I got here, but that resonates for me.
Thank you for your good wishes and your words. "Go figure" indeed. Cheers to your friend who just passed the five-year mark, and cheers to you.
EG
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NoTimeForCancer--
"Hysterectomy+"--so I guess my 6 lymph nodes aren't so many after all.
I wrote this in my reply to MoeKay, too--somehow, in all my reading, I never came across the phrase "a statistic of one" in all the reading I did, but I'm finding it comforting.
Thanks again.
EG
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Sue--
Thank you very much for your kind words and the information. I've been trying to limit myself to studies <6 years old except when I can't find anything on a specific topic that fits that criterion. I also grabbed one of my (step)daughter's extra notebooks and started noting "vocabulary words" to look up. ;)
Enjoy your weekend (what's left of it) and thank you again.
EG
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I am quite worried.I have suspected uterine cancer. I am 80 years old and artist and writer and now have done the blood test and have the MRI tomorrow will meet with my surgeon on Thursday. I do have a mass in my uterus. I was in another group f years ago learned a lot and still in daily contact with a member I met over 15 years ago. Thus, I am a huge supporter of on line groups I live with my adult daughter and husband . There is so much I do not know. I hope to learn from this site I will meet with my surgeon onThursday.
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Welcome, egrrl,
I hope you can gather enough information here to help you make your decisions. I was dx at age 67, 2018, 1a serous, had surgery, chemo, brachy, sentinel lymph node mapping (which means they sample the two sentinel lymph nodes at time of hysterectomy, if negative for cancer they stop there and do not remove more). All of us go through the same type of medical calculation, recommended procedures vs. what we think we want or can tolerate. I am currently NED almost four years. It took me quite some time to finally understand what I had, learn the terminology, treatments available, outcomes, and learn how to cope. You might want to get a 2nd opinion in order to confirm your 1st dx and more importantly, a treatment plan, preferably at a large cancer center, as there are different approaches to treatment. I believe most of them will do remote 2nd opinions and they are usually done quickly. As far as reading studies, etc., I would start with the most current ongoing trials, studies and research papers and work my way back, as so much has changed even in the few years since I was dx. Only you can make the decisions about your treatment and I think that our fellow sister's stories can help you to understand exactly what we have been through. I can only speak for myself, but I am glad that I went through treatment and would not change a thing. Hardest year of my life, but I made it. I made the decision that if I was going to go out, I was going to go out fighting, but I am a pretty stubborn person. Your story will not be your step-fathers, or your husband's wife, we all have folks in our families who did not fare well but I think you should not use them as a reason to not pursue treatment. It is scary to have to face our options (and we are some strong women around here) but face them with YOUR story, YOUR potential for recovery and more time. In the end if you decide to not have treatment, you will be facing issues that might need palliative care so you probably should talk to a professional about what end of life would look like for you specifically. There are no easy answers here, but we are here to help and support you no matter what course you choose. Good luck and keep us informed.
Denise
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Nice to meet you, Lacudia,
We are here to help you and answer your questions, or just offer support. The initial time of diagnosis is always the toughest to get through mentally, but you have come to the right place. Let us know how your surgeon's visit goes.
Denise
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Lisa,
I chuckled at the 3x bm comment. I have exactly the same issue, I talked to my doctor about it and she just looked at me like I was a small child and told me to eat more fiber. Basically she said, "we care if you can't poop, or if you have diarrhea, otherwise 🤷.
Denise
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I am happy to hear that. IIRC, if you are on Medicare, you should not have much of a problem with a 2nd opinion, as anyone who accepts original Medicare should be able to provide a 2nd opinion for no extra cost. If you have Medicare Advantage, then that might be an issue.
"Medicare will pay for a second opinion when you are facing a medical surgery or a major therapeutic procedure.4 This does not mean the evaluation is free. You are still subjected to the 20% Medicare Part B coinsurance you would pay for any other outpatient medical care.
Specifically, Medicare will pay for a board-certified physician to review any existing data in regards to the medical condition in question. Additional information may also be sought, including a physical examination and, in some cases, additional tests."
Hope this helps.
Denise
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I want to welcome our new ladies, too. You have found a great place for our support and HOPE, too!
I can’t really add anything new, but wanted to say I agree with my friends here. Bottom line….many, many of us here have faced these cancers and we’re still here. I think of it and how it went, and how we got where we are now (I always think of it as “we,” because my husband wasn’t the sick one, but he was with me for every minute)….crying, fear, pain and recovery from surgeries, the struggles with chemotherapy, the tests, the scans, the bloodwork….And I survived! I lived! I’m good! It was h**l, but we did it! And here we are enjoying our life together again. No, that does not happen for everyone. If you spend much time around here reading our threads you know we have lost friends. But, you never know how this will go, there are no guarantees, but those of here gave it all we had!
I’m hoping for the best for y’all.
😎, A
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