With free registration, you can ask and answer questions in our HYSTERECTOMY forum community, get free booklets, access Hysterectomy Checkpoints and more. You are not alone. The HysterSisters are here for you. Join us today!
Had breast cancer this past summer and although I was Grade 1 Stage 1 with clear margins after lumpectomy and no lymph node involvement I still had to have raditaion.
Now, Stage 1 uterine cancer found after hysterectomy, BSO and repairs. I see the gyn onc on monday and am thinking they will want to go back in for a lymph node procedure for more accurate staging, etc.
For uterine cancer, is it common to still have radiation therapy even if the nodes scome back clear?
I just want to have my head wrapped around what could be in the future!
If there is spread to the cervix you may have internal brachytherapy radiation
If it is early stage and no lymph node involvement odds are you won't need it.
All deoends on how the gyn-onc does the next part or if she / he thinks there could have been spread during the hysterectomy. If they know going in they bag the organs before removal to decrease chance of cells getting into your abdomen.
We have several members whose cancer was found after the fact that will be able to share their stories.
I was stage 1B with 34 clear lymph nodes, but had a grade 3 tumor. Due to the grade of the tumor, the doctor recommended 25 external treatments and two internal brachytheraphy appointments. Four months later, I was diagnosed with colon cancer with 54 clear lymph nodes. But again, because of the aggressiveness of the stage 3 tumor, I underwent some rounds of chemo.
Welcome to my world, 22tappy. I had both cancers at the same time, had lumpectomy, radiation and chemo for the breast cancer - was node negative, but oncotype dx test score was high. As you know, radiation was necessary because I had lumpectomy, not mastectomy. I was Stage 1, Grade 2, ER/PR+, HER-2 negative.
Why did you have a hysterectomy in the first place? Are you BRCA positive? Family history of ovarian cancer?
My endometrial cancer was Stage 1a, Grade 1. The tumor had grown 1/3 of the way into the uterine wall, but that's under halfway, and everything else including 17 lymph nodes and pelvic wash, was negative for cancer, so I had no adjunctive therapy. Only followup exams and Pap smears every 4 months.
I hope your staging surgery brings you good results and you don't need radiation or chemo. You should already know if your cervix, fallopian tubes, and ovaries were clear, and how much myometrial invasion was seen.
Thanks so much for the help guys! This is really more advice/info than I have been able to find anywhere!
Janet - so sorry to hear of your rough road!
Double - so sorry we are in the somewhat same boat! My hysterectomy and BSO were in tandem with needed prolapse repairs. My doc would not fix the prolapses w/o hyster and I felt that between being on Tamoxifen, past uterine thickening and past weird ovarian cyst that I didn't need any of that stuff! Plus I am 52 so who cares!
All the other "parts" were clear and the tumor was 1.1 cm Grade 1 and was given Stage 1 although the whole staging will depend on results from pelvic wash and node biopsy, right?
Thanks so, so much for the help! I am recouping nicely from my 5.5 hour surgery with many great repairs but feel like the wind has been knocked out of my sails with this cancer mess. Just so mad as they did endo biopsy, transvaginal ultrasound and MRI back in July as I had some UC symptoms. To quote my BC oncologist "no test gives a 100% answer every time but this cancer has been there for years and they certainly missed this one". Poo!
Yes, you're right about staging depending somewhat on wash & nodes. My case was similar to yours - TV ultrasound showed thickened lining but endo biopsy was clear. Path report after hyster showed cancer in uterus and on one ovary.
I was referred to gyn-onc. He said he believed gyn got all the cancer with the first surgery but recommended a second surgery to take the cervix, do the wash and biopsy lymph nodes. It was my choice whether or not to do it. I'm glad I did because they found more cancer in the fatty tissue of the cul de sac (behind and below uterus). My lymph nodes and wash were clear but I ended up being Stage 3a, grade 1. Because of the spread and what my gyn-onc considered to be my relatively young age (50), he wanted to treat it aggressively. Again, it was totally my choice. He said there was a good chance they got it all and I would be fine without further treatment, but I followed his recommendation - 6 rounds of chemo followed by 28 external rads. It was hard but I have no regrets.
A lot will depend on the type of cancer you have (I had endometrial adenocarcinoma) and the stage. Good luck with your appointment. Keep us posted.
SO are you saying that the endo biopsy and the ultrasound, and the MRI back in july were all normal?
I guess I do not understand why the doctor said it had been there for years.
Did they say how far it had invaded into your myometrial wall
If you are grade 1, and the cancer has NOT invaded greater then 50% of the way through your myometrial wall, then usually a the lymph nodes are NOT removed since your chances of spread are so low.
In my case I was grade 1 and they removed the uterus and then, while in the OR they did a frozen section to see how far the cancer had spread, and since it had spread > 85% into the myometrium, they went back in and removed all the lymph nodes even though they all appeared normal.
but 2 were positive.
That all being said, the cancer had invaded a lot of my uterus, and so the likelyhood of spread was pretty high.
I believe that if you have a low stage and a low grade, that radiation is unlikely
arunner - I asked my breast onc if there was a chance the uterine tumor had just formed between July (when they tested me & found nothing) and now. Maybe it was new and thus wasn't there when they tested me earlier.
He replied that the nature of the uterine cancers is typically to begin with slow growth so the one that was found had been growing for a few years and thus his opinion that "they missed it"!
but you had all the testing done that anyone would have done, and so if they "missed it" anyone else would also have missed it.
You had far more testing than anyone would normally have had done to diagnose endometrial cancer, and it was not detected, not sure what more someone else could have done.
I would disagree with him that all endometrial cancers are very slow growing and do not really develop for years.
My gyne/oncologist said that it all depends on what factors are at play causing the cells to turn.
And it IS variable, if there is something stimulating the endometrium, that can all be different
Is that the oncologist who started you on tamoxifen