bilat mast so no hormone therapy??

twogirls

bilat mast so no hormone therapy??

twogirls

I just had a surgeon tell me that since I am node neg. and having a bilat mast, there is no need for me to do hormone therapy after surgery.  This is the first doctor to tell me this.  Has anyone else been told this?

jdg1

No, I have not but would be very interested in finding out if he just based it on the no node involvement and the mastectomies or if there was more.  Did you do chemo?

lvtwoqlt

I was put on Tamox oct 2006 due to multiple dx of ADH. This past April I was dx with DCIS and had bilat mast done June 1 with no node involvement. My dr took me off the tamox after my surgery saying that I did not need to take it any more. I am not doing chemo or rads either.

Sheila 

msannie57

With a really small tumor and no nodes involved that is a decision one could reasonably make.  There is a website nccn.org that has a patient section giving you decision tree info--look under the patient info section then breast cancer and then your stage--there is another section on other treatment after surgery and there is some explanation there.

twogirls

I haven't done chemo and I'm waiting to hear if they think I will need it.  I guess they want to wait until after the masts to make that decision.  Thanks to all of you for the responses.  It would be great if I didn't have to do further treatment.

Beesie

Whether or not hormone therapy makes sense after a bilateral mastectomy all depends on your pathology and your recurrence risk. 

After a mastectomy, in most cases the risk of local recurrence is very low - around 1% - 2%.  A drug such as Tamoxifen can reduce this risk by about 40%, which is less than a 1% benefit, far less than the risk you'd expose yourself to by taking Tamoxifen.  The bigger factor in the decision is one's risk of distant recurrence.   

For someone who has lymph node invasion, even though all the breast tissue has been removed with the bilateral, it's known that cancer cells had already moved out of the breast, so the risk of distant recurrence may be quite high.  In this case, Tamoxifen (or an AI for someone who is post-menopausal) will usually be prescribed, if the cancer was ER+.

For someone who has a larger invasive tumor, particularly one that was Grade 3, even if there was no lymph node invasion, there is always the risk that some cancer cells may have escaped the breast prior to the mastectomy.  The risk of distant recurrence is lower than for someone who had lymph node invasion, but there is still risk, so often Tamoxifen or an AI will still be recommended.  

For someone who has a small, non-aggressive invasive tumor (your situation, I think), or for someone who has DCIS, their risk of distant recurrence is very low.  In this case, while some doctors still prescribe Tamoxifen as a precaution, if you look at the numbers, the risk you'd expose yourself to by taking Tamoxifen likely outweighs the benefits.  For example, one's risk of distant recurrence after DCIS is only about 1%.  After a low grade IDC tumor, it may only be 2% - 3% (this is a number you need to get from your oncologist specific to your pathology). This means that the 40% risk reduction you'll get from Tamoxifen is at most 1.2%.  On the other hand, the risk of serious side effects from Tamoxifen is in the range of 2% - 3% (although this varies by individual depending on their own health history). 

So, if you have a very small sized tumor, then your risk of recurrence is likely very low whereas the risk of serious side effects from taking Tamoxifen might be higher.  Based on this, your surgeon's recommendation is not an unusual or out-of-line.  Having said that, I'd recommend that you talk to an oncologist.  An oncologist is the expert on recurrence risk and he/she is in a better position to advise you about your risk level and whether hormone therapy drugs would make sense.

Harley44

I agree with Bessie... you should be talking to an oncologist, not your surgeon about further treatment.  The surgeon advises you on your surgical options; whether to get a lumpectomy or mastectomy...  that sort of thing. 

When you speak to your onc., ask him about the Oncotype DX test.  This is a test they will do on the bc tissue they took out, and it is the ONLY way to know what your distant bc recurrence risk is...  It may be a helpful tool to you in deciding whether to have further treatment with Tamoxifen.

Good Luck!  Please keep me posted!  I'll be thinking about you!

Hugs

Harley

twogirls

Hi Harley and Beesie,

I met with the onc today and he said to do tamoxifen.  He said given my age (42) the side effects wouldn't be bad and were worth the reduction in recurrence that the tamoxifen would offer.  I have multiple tumors, but all are less than 1cm.  He said definitely no chemo since risks outweigh any benefit I would receive.  Thanks for your responses to me! 

Beesie

At your young age your risk of recurrence would be higher.  And your risk of serious side effects would be lower.  I'd also think that the fact that you had multiple tumors might increase your recurrence risk as well.  So given those factors, it makes sense that the 'math' would work out in favor of trying Tamoxifen.  Seems very reasonable.

I'm glad that you saw the oncologist about this.

yuyubear

I also had a bilateral mast for a large DCIS with multiple foci of IDC, all small but all thruout the large DCIS.  My local onc (and surgeon) said tamoxifen, but a 2nd opinion suggested some chemo first may not be a bad idea due to my young age (42) and the possibility of recurrence despite negative nodes. They could not do the oncotype on the IDC so I took the position that it could have come back as high risk, and am doing TC chemo 4x, starts thursday, then the tamoxifen after that.  That way I won't wonder should I have done it.

  Seems like there are lots of opinions, the choice is yours ultimately.

  

yh in nj