Endometrial Cancer - IIIb - grade 1

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'.

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.

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.

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

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

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