Post-BMX - Stage 1a IDC HER2+ - Facing Herceptin/Chemotherapy

Just to follow up....that study is 4 years old, and doesnt mention herceptin in it that I can find.

BlairK - That is so sweet and thoughtful of you.  Remember to do nice things for yourself as well, take care of yourself as I suspect you are your family's rock of strength.

I think you also pee red.

Eve, from your previous posts about your discussions with your oncologist and your surgeon, here's my understanding of your risk numbers:

• 1% risk of local recurrence after your mastectomy, if the margins are clear
• 24% risk of distant recurrence based on current diagnosis (clear nodes, no evidence of spread) with no treatment other than surgery (reduced to 15% with chemo and Herceptin and Tamox)
• Unknown % risk (but certainly higher than 24%) of distant recurrence if nodes are found to be positive.
• All irrelevant if there is found to be some spread beyond the nodes; at that point the diagnosis would change to Stage IV.

For anyone who has any invasive cancer in her breast, by the time the cancer is found, there already is a risk that some of those cancer cells may have moved, undetected, into the body. The more aggressive the cancer, the greater the likelihood that some cells may have moved outside of the breast before the cancer was ever found and before the surgery was done.  This is the reason why having a BMX doesn't reduce mortality; the risk of mets exists from before the time that the surgery is done, before the breast is removed. Removing the breast after the cancer cells have already left the breast doesn't reduce the risk of distant recurrence (i.e. mets); the mastectomy may be necessary to reduce local recurrence risk but when it comes to distant recurrence, it's kind of like closing the barn door after the horses are out (hopefully the analogy doesn't offend anyone - it was the best I could come up with right now).  That's why systemic treatments such as chemo, Herceptin and hormone therapy are recommended even to women who've had BMXs and who are node-negative and show no sign of spread.  The risk of mets can still be quite high even under those conditions.  But if it's just a few cells that have escaped and they haven't taken hold yet, these systemic treatments can be effective at killing those cancer cells off - and as a result, mets never develops. 

The important thing to understand here is that we are talking about the risk that these cancer cells moved undetected - either slipping though the nodes without leaving evidence, or moving out through the vascular system. Just a few cells somewhere in the body will never show up on a CT scan or PET scan or MRI. If there are positive nodes, that provides evidence that the cancer cells were on the move and that increases the risk.  But even without nodal involvement or evidence of spread, the risk can be quite significant.   An HER2+ cancer is very aggressive. Therefore the risk that some cells might have escaped the breast and moved into the body before surgery is generally quite high. It will never be only 1%.  

As for what your surgeon said, she might have said that your risk is 1% after the mastectomy, but as a surgeon she likely was only talking about local recurrence risk, since that's the risk that it's her job to work on for you.  

Sorry for jumping in here (and sorry, Blair, for taking this off topic).  However having read Eve's earlier post where she detailed the discussion with the oncologist, it was quite clear to me that the oncologist was saying that the current recurrence risk is 24% - after surgery alone (the planned mastectomy) and based on what's now known about the diagnosis (no nodal involvement or spread). Eve, if that is not your understanding of what the oncologist said, then I would very strongly recommend that you call the oncologist for clarification because you are making some critical decisions based on this information. 

Edited for typos only. 

Thankyou Beesie - I'm very worried Eve does not really understand the situation. Her statement that she only had to worry about 1% recurrence made me wonder.

Sue

Thanks Beesie, that is pretty much what I was told, only you said it better. My BS was talking about recurrence in the breast only. However, I will say that all three oncologists I interviewed said that with my pathology and the treatment I chose, the risk of return as breast cancer is less than 7% and the risk of distant recurrence is 15%, and they felt that was high. One of them said there was a 95% cure rate.

Again, that just freaks me out to even hear it said as I know I am cursing myself. Personally, I just believe we can talk all day about risk and statistics, but at the end of the day, either you get it or you don't, even if the odds are in your favor. So far, all the odds they gave me as I went along, I ended up on the bad side of, with the exception that it wasn't in my lymph nodes. I'm just going to carry on and try to keep working out, keep my BMI normal, drink minimally, eliminate refined sugar and flour as much as I can, and then pray.

Eve, since you've had BC in both breasts, if you have a single mastectomy and keep your other breast, you still face the risk of a local recurrence from your previous diagnosis in that breast. You also have the risk of the development of a new breast cancer in that breast.  If you remove both breasts, then you bring your local recurrence risk from all your previous diagnoses down to about 1% - 2% (assuming clear margins).  But here again, reducing local recurrence risk and reducing distant recurrence risk are two different things.  Your previous diagnosis in your other breast was mucinous BC so I believe that your risk of mets from that diagnosis probably is very low, but as with your current diagnosis, removing the breast won't impact or lower this risk.

fluffqueen, I always worry when I participate in a discussion about the risk of distant recurrance because I know that some women get very upset at these discussions and don't want to see any of the numbers. I completely understand that.  And you're right that for each individual woman, you either get it or you don't. 100% or 0%. Unlucky or lucky.  But the risk numbers represent the odds that we will be unlucky or lucky - and the simple fact is that the odds are not the same for all of us.  So sometimes it's necessary to have these discussions because they do influence our treatment decisions.  I think it's fair to say that most of us would be much more willing to consider different treatments if our risk of distant recurrence is 35% vs. if it's 5%. In both scenarios ultimately we either get it or we don't, but the starting point and the risk are very different - and usually warrant different treatment.  In the end though you have to make your decisions, have the treatments that you've chosen to have, and move on, believing that you did your best and you will be one of the lucky ones. 

Blair, good luck to your wife with her MRI.  My fingers, toes and various other parts are crossed that the spot on your wife's liver turns out to be nothing but a scary false alarm. I'm sure that your wife is exceptional, but in this case we want her to be very average - in with the other 95% whose liver spots were benign. 

Fluffqueen - I'm with you.  After being told "less than 10% chance that calcifications on mammo are malignant" by radiologist and "chances are you won't need chemo" by BS and Onc; I have now become like Han Solo in The Empire Strikes Back - "Never quote me the odds."  Makes me sound geeky I know, but it is what I started telling my doctors after need for chemo became apparent.  In the end, the odds don't matter if you get recurrence.  I hope to do like you and give myself the best chance possible for what's in my control.  The rest I'll leave to God.

(((((Hugs to you Eve)))))  You will find your answer.

Orange - my onc said a 50% reduction with chemo and herceptin together, not 50% for each.

And then ~50% for anti-estrogen as well I think.

Blair - I hope the MRI results are good. The people at Penn sound nice - it is important for your children. I'm glad your wife has come around - it was good to get lots of opinions.

Sue

orange, the 15% recurrence risk that I mentioned for Eve after chemo and Herceptin and Tamoxifen was the number that Eve provided in another post based on a discussion with her oncologist. Both the 24% risk (with surgery only) and the 15% risk (with the additional treatments) are numbers that her oncologist gave her.   My post was simply a summary of the data provided to Eve by her doctors, as she has mentioned in other posts.

Eve, hopefully this is not the case but if it turns out that your area of invasive cancer is greater than 2cm - and that's possible given that you didn't have clear margins, your biopsy already showed 1.7cm to 2cm of IDC, and the scans suggest that there is more cancer present in your breast - then even with negative nodes you will be Stage II. The cut-off between Stage I and Stage II is 2cm. Just an FYI. 

To your comment "I prefer to think that the odds are that I will not have a recurrence anywhere else due to complete mastectomy" unfortunately you have to remember that having the mastectomy does not reduce the 24% risk of mets (i.e. distant recurrence) at all - not even by 1%. The only thing the mastectomy does for you is it reduces your local (in the breast) recurrence risk to approx. 1% - 2%.  The mastectomy has no impact on the 75%/24% odds.  By the way, where's the other 1%?  ;-)     

Blair, that's good news from Penn - and hopefully that good news will be confirmed by the MRI results.