DCIS, lumpectomy, mastectomy, no meds??

anet

Hello everybody. I am new at all this. I was dx with DCIS (E+) on one breast at 39 years old. Had 2 lumpectomies and the margins are not clear yet. Had the sentinel nodes removed (2) with no signs of cancer. Decided to go for double mastectomy and reconstruction (next month) because I feel this will give me some peace of mind. The Dr said that I would not have to take any meds but wonder if there are other options on meds. I am planing on testing for genes later to see if I have to worry about ovaries. Any suggestions on treatments after surgery?

karenack

Dear Anet, I would suggest talking to your doctor and find out why you would not be a candidate for tamoxifin since your cancer is E+. That is usually the protocol for this type of cancer. I have E+ cancer as well and I am to have my ovaries removed next month. This is the second bout of cancer that I have had. Cervical cancer in 2002. My doctor and I agree that this would be the best for me. After all, the chemo has already caused me to enter menopause. I am 43 and having no uterus already made this a "no brainer".

LesleyH

Hi Anet,

I was reading in the oncologist's office that the trend now is to treat DCIS as a pre-cancer. Some resolve without any treatment and it does not always progress to cancer (15-60%). However, it does place you at a higher risk for breast cancer. Given your age, I would want to lower that risk. I think because you have elected to have a double mastectomy, you have effectively lowered your risk. I understand why your doctor is doing this, but I would still get a second opinion to be sure. Tamoxifen comes with its own set of side effects that simply may not be worth it in your case.

Good luck.

Please take this as an opportunity to REALLY take care of yourself from now on.

Hugs.

Lesley

KathiM

LesleyH said:

Hi Anet,

I was reading in the oncologist's office that the trend now is to treat DCIS as a pre-cancer. Some resolve without any treatment and it does not always progress to cancer (15-60%). However, it does place you at a higher risk for breast cancer. Given your age, I would want to lower that risk. I think because you have elected to have a double mastectomy, you have effectively lowered your risk. I understand why your doctor is doing this, but I would still get a second opinion to be sure. Tamoxifen comes with its own set of side effects that simply may not be worth it in your case.

Good luck.

Please take this as an opportunity to REALLY take care of yourself from now on.

Hugs.

Lesley

I must agree with Lesley. Tamoxifen not only messes with your hormones, but can cause uterine cancer. Also uncomfortable sides like menopause. Of further interest, the docs are stopping tamoxifen at 5 years....after that, there is a seeming reversal and you are MORE likely to get a reoccurance.

The BIG thing is...do you trust your doc? In the medical community, the pendulum swings yearly from agressive treatment to no treatment. MY belief (stage II, in the sentinels, with lumpectomy) is to treat minimally, and watch VERY CLOSELY. I am still NED 1 year post treatment, but I am an old lady...51....and had stage III rectal cancer 6 months before the dx of the breast cancer (still NED on that one, too!!!!).

Hugs, Kathi

cabbott

My breast surgeon absolutely refused to advise me about drug treatments. He said that his expertise was sugery and that the oncologist should advise me concerning the drug treatments to follow. By the time I visited the oncologist (a breast specialist oncologist by the way), I had already reviewed Susan Love's Breast Book, so I kinda' knew what he was likely to prescribe for me. I had a 90% chance of making it ten years with no reoccurance; tamoxifen made it 95%. That's what 50% better odds means when you have a 10% chance of reoccurance. For me that was worth it, but I had a hodge podge of problems including invasive ductal carcinoma. You have DCIS-that's not invasive ductal carcinoma. If it hasn't left the breast, it isn't likely to set up camp elsewhere. Your chance of reoccurance is probably a lot less than mine was and with mastectomy it is surely lots less. If your odds of making it ten years without reoccurance are like 97% (ask your doctor for the latest odds since I'm guessing), tamoxifen will increase it to 98.5%. There's always a risk and you will have to weigh your odds of reoccurance with the chance of heart or uterine problems that tamoxifen can certainly cause. There are other drugs out there besides tamoxifen but all drugs have risks and you will have to determine what is best for you. Daily exercise and a healthy diet (lots of colorful veggies!) also have a positive effect of reducing the odds of reoccurance without causing problems for your body. In fact, a diet and exercise program that is good for preventing cancer is good for preventing heart disease and diabetes. Some foods have been particularly researched. Check out broccoli, green tea (sencha variety), and tumeric among others. So do the genetic testing, gather a family history, and have a heart to heart talk with a breast oncologist you trust and make sure you understand what your risks actually are and what risks various treatments have as well. Then you will be able to make a decision that is right for you.

AuthorUnknown

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susabella

Hi Anet,
Our situations sound similar. I was diagnosed with DCIS and LCIS in the left breast. A lumpectomy did not indicate clear margins. Sentinel nodes were clear. It was strongly recommended that I have a bilateral mastectomy by 3 doctors as I have an extensive family history. I had the mastecomy on 11/6 with immediate reconstruction. The biopsy showed atypical ductal hyperplasia in the right breast, which was a surprise, but confirmed that I made the right choice! I am 44, and premenopausal. Everyone has told me it's not necessary to have any radiation or chemo, as it was not systemic. I am going to have the genetic testing, due to the family history and if positive, will have my ovaries removed. This is because testing positive for the breast cancer gene(s) raises your risk of developing ovarian cancer. Most people think it is done to reduce your estrogen levels, but my oncologist said it's actually to protect you from ovarian cancer as it has so few warning signs. I was given a 99% cure rate. It's hard to believe that it's enough treatment, I feel like I should do more to make sure it won't come back. It's hard to believe it will be enough and sometimes I feel guilty that so many women here have had it so much worse. I guess what I can do is exercise, eat well, etc. and stay vigilant. I too asked about Tamoxifan, but the benefit would not justify the side effects of the drug. The surgery already has given me a 99% chance of no recurrence. Tamoxifan wouldn't improve that much! I did lots of research, got a second and third opinion and it does seem like this is a reasonable protocal for DCIS. It's hard to relax, though. Keep asking till you are satisfied, and get the additional opinions if you would get some peace of mind from them. Best of luck with your surgery, please stay in touch. It's scary, but you can do it, it does go by quickly. I hope you have help and support so you can focus on healing. You will need to heal your body and your soul, because breast cancer touches both. We're here!

Best of luck and my prayers are with you,
Sue

Kathleenishere

susabella said:

Hi Anet,
Our situations sound similar. I was diagnosed with DCIS and LCIS in the left breast. A lumpectomy did not indicate clear margins. Sentinel nodes were clear. It was strongly recommended that I have a bilateral mastectomy by 3 doctors as I have an extensive family history. I had the mastecomy on 11/6 with immediate reconstruction. The biopsy showed atypical ductal hyperplasia in the right breast, which was a surprise, but confirmed that I made the right choice! I am 44, and premenopausal. Everyone has told me it's not necessary to have any radiation or chemo, as it was not systemic. I am going to have the genetic testing, due to the family history and if positive, will have my ovaries removed. This is because testing positive for the breast cancer gene(s) raises your risk of developing ovarian cancer. Most people think it is done to reduce your estrogen levels, but my oncologist said it's actually to protect you from ovarian cancer as it has so few warning signs. I was given a 99% cure rate. It's hard to believe that it's enough treatment, I feel like I should do more to make sure it won't come back. It's hard to believe it will be enough and sometimes I feel guilty that so many women here have had it so much worse. I guess what I can do is exercise, eat well, etc. and stay vigilant. I too asked about Tamoxifan, but the benefit would not justify the side effects of the drug. The surgery already has given me a 99% chance of no recurrence. Tamoxifan wouldn't improve that much! I did lots of research, got a second and third opinion and it does seem like this is a reasonable protocal for DCIS. It's hard to relax, though. Keep asking till you are satisfied, and get the additional opinions if you would get some peace of mind from them. Best of luck with your surgery, please stay in touch. It's scary, but you can do it, it does go by quickly. I hope you have help and support so you can focus on healing. You will need to heal your body and your soul, because breast cancer touches both. We're here!

Best of luck and my prayers are with you,
Sue

Hi Sue,
Our stories sound sooo similiar. I am 43 years old. Married mom to 4 girls. Recently dx'd in 12/06 with DCIS and LCIS of left breast and my margins were not clear also. I had a bilateral mast. on 2/7/07 because of strong family history. Mom,her sister, their first cousin and their Aunt on Fathers side all with breast Ca. Types,I cannot say as my mom died this past March and did not leave us with the information and her MD is not available to provide it, and her sister hasn't a clue, even as to the type she had just 12 years ago. We do know that Mom was a 40 year survivor and we do know that she had a bilateral radical mast.
My pathology on right breast also showed apocrine hyperplasia and ductal hyperplasia, atypical. Currently, I just had staples and stitches removed last night. I was handed a Rx for tamoxifen 20 mg/day and prosthesis and bras. I am researching into the TRAM reconstruction which I would like to have done mid - late May. I thought that after seeing my Mom for so many years this would be easy, but recently I am not feeling that. I feel.........sad and somewhat lost, but cannot , because I still have little children and all girls, so I have to be strong and be able to show them that GOD FORBID this should happen to them, that it is OKAY to take this step.