Oophorectomy to prevent recurrence of ER/PR+ breast cancer

horsegal

I'm not really sure what to do here, but here goes. I'm wondering if there are some survivors out there who were pre-menopausal, chose to have an oophorectomy (or not) and would like to share thoughts or advise with someone facing that decision. I was 41 when I finished nursing my youngest son, and found a lump. I was diagnosed with stage 3, invasive breast cancer in January '07. I found a lump in my armpit also, but tests showed that it hadn't spread anywhere else, thankfully. I had four rounds of A/C, to shrink the lump in my armpit, and then chose to do a double mastectomy. They removed six nodes, and found cancer in two of them. I then had four rounds of Taxol, followed by 33 treatments of radiation. I have been on Tamoxifen for a year now, and my Oncologist has suggested I have my ovaries removed and switch to an AI, to help lower my risk of recurrence. I'm having mixed emotions about it and would just like to talk to someone who's 'been there, done that'! I'm hoping there are a few of you out there who have been faced with this decision as well, and I would love to hear anything you would care to share - the upsides and downsides. All I really want to do is see my two beautiful little boys grow up. Thanks for any and all comments from anyone who chooses to input.

Eil4186

ovary question
I was diagnosed at 42 with er/pr+ tumor and had the same chemo as you. The chemo stopped my periods but now over 2 yrs later my bloodwork shows that I am still premenopausal. Originally, when diagnosed, my 2nd opinion doctor had mentioned ovary suppression along with tamoxifen. But my oncologist has never brought it up. All the articles I have read about say that researchers do not know if ovary suppression with tamoxifen is actually better than tamoxifen alone. For me, I would rather keep my weight down and exercise to lower estrogen production. I also do not want instant menopause---the hot flashes I have from the tamoxifen are bad enough. You have to do what is right for you, but if you do decide to shut down your ovaries, you should consider suppressing them instead of surgery because it is reversible. Once they take your ovaries out, they can't put them back.

seof

In a sense I have been there
In a sense I have been there but not done that. I was diagnosed May 2007 at age 43, already had 2 girls in middle school, and a very supportive spouse. My Sister was diagnosed at age 40, died age 46 in 2003. She did the gene testing, was neg. I did the gene testing too. Before I got the results I decided that I would do bilateral mastectomy and oopherectomy if I was positive. I turned out negative, so I didn't do the ovaries, just the breasts. In my opinion, it is more important to reduce the risk of cancer than to preserve the ability to get pregnant. However, it is one of those very personal, very difficult decisions that each individual has to make for herself.

Best wishes, seof

KathiM

Part of my first cancer surgery...
I had a total hysterectomy, along with my bowel resection. I was 49 years young at the time, with my tubes tied years ago, so I wasn't planning on any more children.

Because of my osteoporosis, even tho otherwise I could take the AI's, I am on Tamoxifen, have been for a bit over 2 years. I discussed the switch with my oncologist, he said: "Well, the overall percentages are better with the AI's, but for you, it works out to a bit over 1% improvement over Tamoxifen. You could try switching to the AI's, if your dexascan looks good, but if you have side effects, we would pop you back onto Tamoxifen. It's really up to you."

My cholesterol is historically high, as well, and that is another risk with the AI's...they tend to raise it. I am not currently on any drugs, I manage it by diet, so this would be ANOTHER drug to add to my daily arsenol...

I suggest researching the acceptability of YOUR body to the AI's common risks...bone thinning (a dexascan) and a cholesterol panel.

Hugs, Kathi

mmontero38

I asked my oncologist and my
I asked my oncologist and my gynecologist about it and they didn't agree with removing the ovaries. I tested negative in the BRAC testing so therefore they didn't feel I needed to go through yet another procedure. Ask your gynecologist about it and see his/her opinion on this matter. Hugs to you, Lili

horsegal

Eil4186 said:

ovary question
I was diagnosed at 42 with er/pr+ tumor and had the same chemo as you. The chemo stopped my periods but now over 2 yrs later my bloodwork shows that I am still premenopausal. Originally, when diagnosed, my 2nd opinion doctor had mentioned ovary suppression along with tamoxifen. But my oncologist has never brought it up. All the articles I have read about say that researchers do not know if ovary suppression with tamoxifen is actually better than tamoxifen alone. For me, I would rather keep my weight down and exercise to lower estrogen production. I also do not want instant menopause---the hot flashes I have from the tamoxifen are bad enough. You have to do what is right for you, but if you do decide to shut down your ovaries, you should consider suppressing them instead of surgery because it is reversible. Once they take your ovaries out, they can't put them back.

Thanks for the suggestion
Thanks for the suggestion about suppression. I hadn't even been told about that option. I'm seeing an oncology GYN next week, so I plan to ask her more about that and see if it's an option I might want to consider. I've kind of decided, at least temporarily, to wait on the surgery. I read that if you have your ovaries removed before age 45, it's best to be on a low dose hormone, or there are several added concerns. That is not an option for me. I guess I'll see what this doc says, and go from there. I'm also trying to lose weight to help with lowering my estrogen. I hadn't lost all my baby weight, and that lovely Taxol made me gain even more! I've been steadily working at it since February, and have lost 33 pounds so far. I'm not far from my 'ideal' body weight, so I'm hoping that is helping as well. My three year old saw the picture of you and your cat, and he likes your cat - it looks just like his cat!

horsegal

seof said:

In a sense I have been there
In a sense I have been there but not done that. I was diagnosed May 2007 at age 43, already had 2 girls in middle school, and a very supportive spouse. My Sister was diagnosed at age 40, died age 46 in 2003. She did the gene testing, was neg. I did the gene testing too. Before I got the results I decided that I would do bilateral mastectomy and oopherectomy if I was positive. I turned out negative, so I didn't do the ovaries, just the breasts. In my opinion, it is more important to reduce the risk of cancer than to preserve the ability to get pregnant. However, it is one of those very personal, very difficult decisions that each individual has to make for herself.

Best wishes, seof

I'm really sorry about your
I'm really sorry about your sister. My heart goes out to you. My older sister was diagnosed with the same kind of cancer as me a little more than a year before I was. She used to joke and say she 'bit the bullet' for our two older sisters and me. She did the genetic testing and was negative. I did it and mine was negative also. I even did the test for the rare rearrangement - her insurance wouldn't pay for that one, but mine did. It came back negative also. I had kind of decided the same thing as you - if it came back positive, out come the ovaries. When it didn't, I kind of let it go, but my oncologist is still suggesting it. I've kind of given up on any more babies - though it breaks my heart, since we wanted one more to complete our family. I have to take drugs for five years, and so I will be 47 by then, and my oncologist has said it really isn't an option for me anyway because of the kind of cancer I have - it would be too risky and she did not advise it. So I'm just happy to have been blessed with these two beautiful little boys. Thanks for your opinion.

cabbott

It sounds like it is time for you to consult another oncologist for a second opinion. The statistical advantage of stopping cancer needs to be weighed against the side effects of sudden surgical menapause. A different oncologist, preferably one that is a specialist in breast cancer, might be able to weigh all the advantages and disadvantages and give you the best advice. Good luck!

horsegal

mmontero38 said:

I asked my oncologist and my
I asked my oncologist and my gynecologist about it and they didn't agree with removing the ovaries. I tested negative in the BRAC testing so therefore they didn't feel I needed to go through yet another procedure. Ask your gynecologist about it and see his/her opinion on this matter. Hugs to you, Lili

Thank you for your input
Thank you for your input Kathi and Lili. I don't get to check in here too often, but wanted to thank each of you for your time and comments. I plan on having my cholesterol checked, since I haven't had that done, and definitely asking about a dexascan if I decide to pursue this further. I'm going to ask the GYN more about all this at my appointment next week. I have two cysts that I have to get checked out further also. They showed up on my last scan, and they say they could be functional cysts, but couldn't rule out the possibility of tumors. I'm trying to stay positive and am hoping they were caused by the tamoxifen, since I read that it can cause them. I will find out more next week. It helps to know there are other people out there I can connect with since I live in the country and there are no support groups very close to me. I would have to drive about 45 minutes to get to the closest one, and that isn't very convenient for me. I appreciate you all taking the time to clock in.

horsegal

cabbott said:

It sounds like it is time for you to consult another oncologist for a second opinion. The statistical advantage of stopping cancer needs to be weighed against the side effects of sudden surgical menapause. A different oncologist, preferably one that is a specialist in breast cancer, might be able to weigh all the advantages and disadvantages and give you the best advice. Good luck!

Thanks for the suggestion.
Thanks for the suggestion. I had talked to a gynecology oncologist about this when I had my annual pap in July, and she asked me if I understood that the reason my oncologist was suggesting this, was that she was trying to take every measure she could to keep the cancer from returning. I really like my oncologist, but I think perhaps another opinion might be a good idea at this point. It sure doesn't hurt to have more input on the situation. If it's not going to help me out a lot, I'm not sure I want to go through all the baggage that will come with this type of surgery. I appreciate your input.

muse23

horsegal said:

Thanks for the suggestion.
Thanks for the suggestion. I had talked to a gynecology oncologist about this when I had my annual pap in July, and she asked me if I understood that the reason my oncologist was suggesting this, was that she was trying to take every measure she could to keep the cancer from returning. I really like my oncologist, but I think perhaps another opinion might be a good idea at this point. It sure doesn't hurt to have more input on the situation. If it's not going to help me out a lot, I'm not sure I want to go through all the baggage that will come with this type of surgery. I appreciate your input.

Hi,
Sorry you have difficult decisions to make. They are only difficult until you have researched enough and make the best possible choice with the options available. I was on the fence for a while. It's nerve racking....
Beginning in Fall 2006 & over the next 2 years:
I had Estrogen positive receptors, 2 mastectomies (one prophylactic a year after the first, with the tumor) 3 Positive nodes. 4 months of AC and Taxol. I went on Tamoxifen and read that the side effects could be uterine cancer. Although I am not genetically predisposed, my mother had cancer of the uterus, a hysterectomy and 20 years later breast cancer. She did not get treatment for that and died in the early 1990s.
I have spoken with women during the past couple of years, including RNs and when it was time for reconstruction of the second breast I had a laparoscopic hysterectomy too. It was painless and I am greatly relieved that I will not have to worry. This was a decision that was fairly easy for me.

I got off the Tamoxifen and have gone through the arimatase inhibitors. I'm on Femara...they all gave me the same hot flashes etc.
I was pre menopausal when diagnosed in fall of 2006 at age 52.

Somewhere during Chemo in early 2007 I broke a foot bone...just woke up one morning with a stress fracture. The dexa scan showed normal. However a year later when all surgeries were complete I asked for another scan and now have osteopenia. Didn’t know That was a side effect of chemo. Maybe it was the 3 surgeries and not much weight bearing exercise.
The oncologist just gave me a Fosamex prescription. I researched and saw the side effects of that could result in problems with the jawbones. Now it's weight bearing exercise and Calcium/Magnesium in 2 to 1 ratio with lots of vitamin D for absorption. Don't drink brown sodas like Coke...as they leech calcium out of our bones...phosphates are the problem.
It seems that every drug we put into our bodies to help has a side effect that has a major impact. My decision to go to the least problematic drug, the A.I.s, by getting the lap hysterectomy, gives me peace of mind. I hot flash often but its no big deal compared to everything else that I've endured.

I am 54 now, have a 15 and 22 year old. I certainly want to be around to continue mothering...and making music....I'm creating a project for using music and visualization during treatments in the cancer battle....wish me luck. Nothing is on the Website for that yet as I'm still looking for feedback and funding (www.vickirichards.net)
if you decide to go for the Lap Hyst, get your insurance to cover it. My oncologic gynecologist said I was a candidate due to family history and he had always gotten the insurance companies to pay.
I'm now a Thriver, way beyond survivor: )
Wishing you clarity and best health.
Muse