No Tamox after Bilateral Mast.

newyear13 · February 2013

Hi, I just posted this on a treatment thread and it was suggested I post here.

I was diagnosed with invasive ductual carcinoma with tubular features in Dec. The stage could not be determined at the time. In January, I had a bilateral mastectomy. Final pathology showed early stage 1 cancer and that it was .2 centimeters and apparently all taken at time of biopsy--no residual cancer found. They did discover an area with atypical lobular hyperplasia--with mastectomy it's all gone. Onc. said because of mast. I avoided radiation, and that chemo in my case was unnecessary. Additionally, he stated because the tumor was so small and caught at such an early stage, he is not recommending tamoxifen as the potential side effects outweigh the potential benefits in my case. Prior to consult, a panel at my hospital (surgeons, radiologist, and oncologists) reviewed my case and agreed tamoxifen would not be recommended.

I feel so fortunate that this was caught so early. I am concerned, however, that if I don't take tamoxifen I may still have a recurrence given the insidious nature of bc. Have any of you been in the same position? Your thoughts are appreciated. I am 48, premenopausal, er and pr positive, her2 negative. stage 1 grade 1 tumor .5 centimeters. Thank you!!

grammietofour · March 2013

Hi new year13, I am in nearly the identical position as you but ILC stage 1 node negative. I am waiting to see medical oncologist next week and will touch back.

Hhbelle · March 2013

Hi New year 13, I was diagnosed in 8/2012 after having a normal mammogram- they did an ultrasound because I found the lump r breast. After having the lump removed, I was devistated to find out it was invasive bc under 2 cm ER+,PR+, HER2 neg . No family history. After having MRI, they found 3 more areas of suspicion, two of these extra areas proved to be invasive tumors as well. i decided to have double mastectomy 10/1/2012. Lymph nodes were neg which I thought would save me from having chemo since I chose more aggressive surgery. Pathology from surgery showed 3 invasive tumors all under 2 cm r breast- all with clear margins, also with more DCIS which was still contained in the milk ducts. Left breast was neg but I don't regret my decision re double mastectomy. My oncologist decided to do onco testing which came back on the higher side of moderate for reoccurence, so I just finished chemo 4 rounds, no radiaation needed. They are not sure if chemo will help with reoccurence because I'm in the "gray area" but I couldn't not at least try. My oncologist is recommending Tamoxifen x 5 years because I am pre-menopausal 41 yrs old. I'm worried about taking the Tamoxifen because of the increased chance of uterine cancer-not to mention all the other side effects. I'm still having hot flashed from chemo. I'm due to get my expanders replaced with implants, I chose reconstruction-my only option was expanders under pectoral muscle-then implants because of my body frame. It doesn't hurt to get a second opinion.

newyear13 · March 2013

Hi Hhbelle,

Congrats on finishing chemo--you have been through a lot in a very short time! Do you recall the grade of your tumors? I think the grade of the tumor and your age have a strong impact regarding the tamoxifen recommendation.

I did get a second opinion from a specialist in Indiana at the Simon Cancer Center. She also stated that she believed I need no further treatment. With the "cancer math" program my tamoxifen benefit figured out to be less than 1 percent. One of the very informative ladies on this forum suggested I review it, and it was helpful. Still, I worry a bit that I'm not doing enough--although logically I understand why the general opinion has been that tamoxifen is not needed in my case. I am working out a lot and I've revamped my eating habits in a drastic way--hoping this will help the estrogen situation. A friend suggested I get my ovaries taken out, and I need to discuss this with my oncologist.

I understand your worry about the side effects. But if the doctors with whom I've consulted recommended it, I would take it. I think it's all about the benefit vs. risk analysis. Please let me know how reconstruction goes. I'm doing the reconstruction with implants a few months down the line.

All the best to you!

msphil · March 2013

hi sweetie, I was in process of making wedding plans when diagnosed, I had a choice of lumpectomy but she suggested l mast, so I went with mast which was hard decision cause i didn,t want to go into, marriage with one breast but decided it was best to go with mast, I was also on Tamoxifen for 5 yrs and I am now a 19 yr Survivor this yr(Praise GOD), so I wanted to get ALL the chances possible for long term Survival, will pray for you, it is your decision. msphil idc, stage2, 0/3 nodes involved, shemo(cytoxin, adriamycin) and radiation.

grammietofour · May 2013

NewYear13,

I did see my oncologist, his recommendation was same as you had, felt it was entirely up to me, felt that there was not a clear benefit versus the risks involved and potential side effects, but said I could take it if I felt impelled to do so but was in agreement with me if I decided not to. I have opted against Tamoxifen but am sure I will be questioning it all the time. However, if I opted to take the tamoxifen, I would be worried sick about the potential for DVT, endometrial cancer, etc., every day so I choose to worry about recurrence and feel good each day versus side effects with tamoxifen. Laura

violet_1 · August 2013

NewYear: My case is similar...and NOPE, I'm not taking Tamoxifen/ Onc DX: (8 & 13/see sig. line for more info.). My Onc. & tumor board said entirely up to ME...my Onc. is behind me 100%. I did get a 2nd opinion...she said I COULD TRY it...but didn't push it at all. I have an aunt who had uterine cancer also. There are MANY, many reasons why I choose not to take Tamoxifen or Hormone therapy at this stage of Breast Cancer. IF my cancer comes back (& I had BILATERAL/both breasts IDC), I will not flip out & wish I would've taken the T.

It's a crapshoot at our stage, espec...we all have to make our own decisions, but my Onc. did admit that Onc's do have to cover-their-butts...and must highly suggest the "Standard of Care" for legal reasons aside of ethical reasons & practicing good medicine... I love the man! He is the first to admit that the Medical Professionals DO NOT have all of the Answers and that "Standard of Care" is necessary, but paints with a broad brush...and patients can research & decide for themselves...and sometimes the damn side effects and possible damage the "cancer treatments" may cause (immediate & future), just aren't worth it.

Are you at peace w/ your decision now? I know this thread is a bit older...

Bless Us ALL!

mepic · August 2013

Been gone awhile but wanted to pipe in that if you tend to get anemic (as I do) from heavy periods Tamoxifen can make it worse because of the bleeding/uterine problems it causes. So glad my oncologist is a hematologist also so he sees the big picture. He agrees with my decision NOT to take Tamoxifen as it would have only reduced my risk by a couple percent...not worth the risk. For early stage BC it should not be pushed on us the way it is...it really should be a more individualized decision. He also feels I really took care of it by having double masectomy and the chances of having to deal with BC again in the future for me are very small. For those of you deciding between lumpectomy and masectomy you should know I get this a lot...from every doctor I see. Makes me question why they don't tell you this while you are deciding between bmx and lumpectomy. I would be pretty salty if I had done lumpectomy only to go on and need masectomy....glad I got it done the first time. But again that's just me....not knocking anyone who chooses lumpectomy but you should know what they are saying to us who have had bmx....it's only fair. Not interested in arguing the fact I just think this information should be out there for someone trying to decide between the two.

No Tamox after Bilateral Mast.

Comments

Categories