uterine cancer after breast cancer?

I was treated for breast cancer last year, Stage 1. Have been doing well but now am concerned about my fibroids again. I had hoped they would shrink after chemo-induced menopause but they have grown slightly (about 13 wks size). Hadn't had a period for a year when I started having spotting last month. My gyn has told me that she doesn't think I have uterine cancer and did an endo biopsy that was clear. I am still concerned about cancer though and am getting pelvic pain and back pain, with a feeling of fullness in the abdominal area. I have an ovarian cyst also. I am scheduled for a hyst Dec 1 but am wondering if I am doing it for the right reasons. Any similar situations out there? Am thinking I will have the ovaries out as well. Has anyone here had fibroids that turned out to be cancer? Thanks

Dear Yoga,
Hi...read your post. I was treated for BC (had a double mastectomy & reconstruction) When this surgery was being done, my Surgical Oncologist was rooting for me to have a BSO TAH at the same time. I was 44 when I was diagnosed with BC and since this operation was done so hurriedly, I could not bring my self to do the hyster. I told myself and everyone else I would do it as soon as I felt like I could manage it. I too had fibroids that were being monitered every six months with a transvaginal ultrasound. I was also having CA 125's drawn every month. My fibroids were BIG so they were causing me some of what one would condsider the usual discomfort. I was always constipated and my lower back would hurt at especially at night. I would keep a heating pad by my bed to help with the discomfort. About a year after my mastectomy, I decided I was done with the follow-up and the discomfort and signed up for the TAH BSO. Coincidentally, just after I had my date for surgery scheduled, my abdomen started to really swell. Long story short, my post surgical pathology revealed a uterine tumor, a leiomyosarcoma, a very rare uterine cancer. It was big, 9cm and very aggressive. I would have my hyster sooner than later if I were you; hang onto your date. One needs to be concerned with these things especially if there is rapid growth. I am not trying to worry you or suggest that there is a cancer, but I am sure you have to be tired of always wondering what is lurking inside. Just get it done. There is so much literature and PR out there about folks overreacting and having unessecary hystyerectomies that I think that it is hard to understand that sometimes that is THE BEST recourse for some of us. The current anti-hysterectomy philosophy is important. However, just like any other new social/medical movement sometimes the pendulum can swing too far and those of us who clearly need to have this procedure may have our judgement clouded by media sound bites that don't pertain to us. It's miserable second guessing yourself.

Sorry for the ramble...good luck,
Beachball

Thanks Beachball, I appreciate hearing your story. My gyn is suggesting a supracervical hysterectomy and oophorectomy, with morcellation of the uterus (taking it out in pieces). I saw gynecologic oncologist for a second opinion and she felt that if I am concerned about cancer, I would be better having the uterus removed as a whole, vaginally. She felt that would eliminate the chance of cancer cells being left from the morcellation. My gyn does not feel that is an issue, and is not concerned about cancer. It would be easier and less expensive to have my gyn do the surgery, and she is very good, but she is not trained in cancer. I have to decide who I am most comfortable with. It's too bad they can't do a biopsy of the fibroids to know what to expect. Was your CA 125 negative?

Thanks,
Yogaswim

Yogaswim,
Has anyone done the blood test that determines if you are in complete menopause? I can't remember the name, but I think it measures that amount of FSH in your system thus determineing if you are truly in menopause. I ask this because you have not said why you have had vaginal bleeding. If you truly are in menopause, this should not be happening.

Also, fibroids feed off of estrogen. If you are in menopause and there is little to no estrogen, why are they growing? I think these are two good questions to ask your gyn/onc.

Did the gyn/onc mention what her opinion was of your situation in regard to a potential malignancy?

You asked about my ca125. I was involved in a study that took high risk women's ca 125 every three months. As I went thru the program, my ca125 continued to rise in small incriments every single time I went in. Sometimes it was 2 points, other times it was five. My last one was 32 just prior to my hysterectomy and of course, I had no more after that. According to guidelines for ca 125; I never crossed the "normal" mark which is over 35. However, personal speculation tells me this. I know ca125 does not diagnose uterine ca only ovarian ca and does an unreliable job at that. I also know that this result can be high becasue of fibroids. However, I am curious as to why mine kept creeping up. No medical evidence would support my musings, but hmmmm?

Lastly, my ob/gyn was not alarmed by my ultrasounds, but was on board with doing my TAH BSO whenever I was ready. When I told him "lets do it"; he said okay when? "No rush" and proceeded to give him his availabilty which went from immeditely to over the next six months. He was very accomodating and very good, but not a ca doctor. Thankfully, I was over it and asked to be taken ASAP.

In retrospect, I should have had a gyn/onc do my surgery. Because of my history and my family history
and some of the gyn problems I have had in the past, that would have been my best bet. I am THANKFUL that I did have a very good GYN who knew enough at least to be careful and refused to do any other surgery than abdominal. While he saw nothing in specific to be concerned about, he knew that sometimes imaging does not give you the whole picture. My uterus was removed intact which added greatly to having a better prognosis. Perhaps you could ask your gyn to do a different proceedure? Anyway, ca found in fibroids is a very rare thing and you are probably ok...but do try to err on the side of caution.
Beachball

yogaswim
So many decisions to make. It is good that you are asking questions. I have not had breast cancer or uterine cancer, mine was ovarian. That being said, if you are at all concerned about unterine cancer, I would suggest going with the recommendation of the gyn/onc. You can always get another opinion if you wish.

A CA 125 is one tool in the diagnosing of ovarian cancer. It is not very accurate so it is one thing they use in the diagnosing and treating of this cancer. I am not aware of it being used in the diagnosing of other cancers.

s and ers
Jane

Hi Yogaswim,
As Beachball already mentions, it is very important to determine whether the gyn/onc thinks there is a chance of uterine cancer or perhaps another cancer present. What did he/she think of the endo biopsy? I understand that since the biopsy cannot cover the entire area, there is the possiblity that pre-cancerous or even cancerous cells can be lurking even if the biopsy showed things as normal. Perhaps other tests can be done. For example, for uterine cancer often a vaginal sonogram is done and sometime even a D&C.
Also, have you had tamoxifen treatments for your breast cancer? There is an increased incidence of endometrial cancer in patients treated with tamoxifen and thus they are advised to have follow-up pelvic examinations and any abnormal uterine bleeding needs to be carefully assessed.
If cancer is at all even remotely possible, you will want a gyn/onc at least present to take over if cancer appear during the surgery. I think many gyn/oncs would want to avoid a hysterectomy that involves morcellation of the uterus (taking it out in pieces) and you want to be sure to have the best kind of hysterectomy for your particular case.
Pls let us know how you make out.
s,
peggiesue

Thanks for the replies. The gyn/onc said I have "less than 3% chance of fibroids being cancerous", which is very low but higher than I was expecting because my gyn said "less that .01% chance". The difference comes from my breast cancer history and taking tamoxifen. When my oncologist tested my estrogen levels in May, she said that I was in or very close to being postmenopausal. Then in Oct I had some spotting, but nothing since then. She thinks that was within the norm for chemo-induced menopause. My gyn and onc/gyn both felt that it was not outside the norm for fibroids to continue to grow in menopause, although they usually don't. I was surprised that they did grow in the past year.

My regular gyn is very good, excellent reputation, and does not have any hesitations about doing the supracervical laparoscopic hysterectomy, removing the uterus in pieces. She says they wouldn't use the procedure if it involved risks relating to cancer. The onc-gyn said that that procedure would mean I would need chemo if the fibroids were cancerous. It would also mean another surgery for the onc-gyn to go in and do the staging, since she could not be called in during the surgery. The onc-gyn recommended a vaginal approach total hysterectomy laparoscopic assisted, using a metal ring to help with removal of the whole uterus. That approach isn't available at my hospital, so I would have to go to another one. With that procedure, they would remove my cervix also, and I was hoping to keep that.

I will talk with both doctors again. I do see my oncologist for followup with the breast cancer on Friday so I can pick her brain too. I know it is very unlikely that all my concerns will be necessary, but I want to make the decision regarding surgery with as much knowledge as possible. Thanks so much for your input. It is very helpful!

Hugs!!!!!

YogaSwim

(((YogaSwim))) what a tough decision to have to make. I'm glad you are taking your time getting opinions to help you decide what is right for you.

I didn't face the same decision, because I got breast cancer after my hyst. However, I've done quite a lot of research since then on all this, especially when I attempted to take Tamoxifen myself.

Taking Tamoxifen does greatly increase the odds that you might end up with endometrial cancer (not cancerous fibroids, but actual cancer of the endometrium), which is why so many women have prophylactic hysterectomies after a few years on Tamoxifen. Given that possibility, and the fact that the cervix is a part of the uterus and not a separate organ, I would lean heavily towards having it removed.

I would also not allow anyone to operate a morcellator in the vicinity of any of my pelvic organs if there were the slightest possibility of cancer. I think your gyn/onc told you as much, right? It is extremely risky and could involve your having to go through additional surgeries and other treatments in the unlikely event that you do have early stage endometrial cancer and not just fibroids. To me, that risk just isn't worth it.

Please don't dismiss the possibility of having the vaginal procedure with the uterus removed in one piece, or for that matter, an open abdominal procedure, just because you might have to use a different hospital. You never know, that might be the best decision you ever made. I recently had to do radiation after my breast cancer returned, and because the hospital near my house, where I've had all my surgeries done, didn't have the equipment for the type of radiation I was doing, I had to travel 30 miles each way twice a day for the treatments. It was soooo worth it -- I had great care, and in fact, will continue to see one of the rad/oncs I saw there because he was so good.

Let us know what your oncologist says at your appointment, OK? And good luck with whatever you decide to do.

s,
-Linda

No one can tell you what to do, it is your decision, but we can tell you our experience. My gyneocologist, also well-respected, didn't even think I had cancer and did a laproscopic. Two weeks later, endo and ovarian cancer, and six weeks later, major surgery again for the lymph nodes and abdominal wash so they could stage it.

With your history, if this were me, I would go with the gyn/onco's opinion. I really wouldn't want to take any chances.