second primary breast cancer after bilateral mastectomy

[ellabella]

Two years ago I was diagnosed with stage 2 invasive ductal carenoma  (at the age of 34), HER2Nu+ no lymphnode involvement.  I had bilateral mastectomy with tissue expander reconstruction, silicone implants.  I had 6 cycles of chemo. I have found a lump on the outside of my non cancer breast a few months ago.  An ultrasound and MRI showed nothing conclusive. It has gotten a little bigger in the last six weeks since the tests were taken.  I have moved to a new city in the last year and don't have a good familiarity with any of my Dr's.  One is telling me it is nothing to worry about and the other wants to do an incisional biopsy asap.  Could it be a second primary cancer?  What is your feeling on having an incisional biopsy?   I really don't want to have one if at all possible.  Thank you in advance for your help.



Ellabella

[CCF-RN,MSN-rf]

Dear Ellabella:  Theoretically, if you had a bilateral mastectomy, there should not be much breast tissue left that could then be a source for a primary cancer.  So, if this lump were to be malignant, the question would be whether it is in breast tissue (and could represent a new breast primary) or whether it appears to be a metastasis.  The first question, however, is whether the lump is cancerous or not.  If the lump is growing, it needs further investigation.  Without biopsy, it might be impossible to tell. If you're not confident in the opinions you have received, consider another opinion with a breast specialist.

[pitcrew]

Please don't let your doctors bush you off. Have it biopsied as soon as possible. One year ago I had a lump devolp in the lymph node of my right arm (opposite of original BC)The doc said not to worry highly unlikely that it was anything to be concerned about. I insisted on a biospy and it turned out to be maligant. Unfortunity it wasn't a new primary but mets. Please insist it be checked out.

[ellabella]

Thank you for your responses.  I was wondering from pitcrew, had you had bilateral mastectomy the first time you found a lump?  Also, how did the lump feel in your lymph node?  Has your cancer metastized anywhere else? How did they know it was metasteses vs new primary? When I had my mastectomy they found a few lymph nodes in my non cancer side breast tissue.  The lump I have now is on the outside of my breast towards my underarm. I am trying to make arrangements to go back to my original breast surgeon and have her do look at it and do a biopsy.  When you had your second lump biopsied was it incisional or needle?  They told me I would have to have it removed incisioanlly which I do not want to do.  Sorry for all of the questions you are the first person I have found who has experienced this.  Thank you again, I have been very scared and not really sure what to do.  I hope you are doing well.



Ellabella

[pitcrew]

where to start. I had left mastectomy in sept 03. At that point know one had said anything about preventive bi-lat. In Late Nov, Early Dec of 2004 I noticed a lump under my right arm. It felt like a knot. slightly moveable and somwhat like a lymph node. The doctor wanted to just watch it, well after a few weeks I had enough watching and he ordered an Ultra sound, which showed what they thought might be a reactive node, but to be on the safe side they ordered a Needle biopsy. The results came back and it had the exact same type of cells as my original cancer. Opted for a right mastectomy in the hopes a new primary would be found and I didn't want to mess with it any more as I had just had a clear mammogram (nothing new they all were clear, even after they found the first BC) So I had a pet scan which showed only the area under my arm. Had the mastecomy late Jan 2005. Path reports showed 3 nodes involved and nothing in the breast itself. All reports showed cancer as identical to original. I had 3 opinions and all doctors agreed they COULD make a case for a new primary but they all believed it to be mets. A few weeks after surgery I still had what I and the doctors thought was a hematoma under my right area in the surgery area. nothing was done. early March had another Pet scan which lit up not only the supposed hematoma but other areas in my neck (both sides) and nodes under my collar bone. Spleen which had be suspesous in CT scan and ultra sound did not lit up so they are thinking its nothing. Went on Xeloda for approx 6 months and was NED for 3 months. Came back in the same places in Dec, currently back on Xeloda with another PET scan sceduled in 2 weeks. ps. for the record, not sure if it matters but I am triple negative.

[pitcrew]

as far as having needle rather then insisnal sp?.. I think I'd rather just get it out and get it over with.

[ellabella]

Dear Pitcrew,

I am sorry to hear you have gone through so much.  It sounds like you are on top of your dr's and have a fighting attitude.  When you say you are triple negative do you mean ER/PR and Her2Nu?  Did you have any lymph nodes with your first mastectomy?  Did you have chemo and or radiation?  I had 6 rounds of chemo after my mastectomy, no radiation.  Have you ever had the blood level test done.  My oncologist now has been doing it but I never had it in 2003 when I was diagnosed.  I have heard it is not very reliable.  When I had an ultrasound and MRI of the lump they both showed nothing, but I have noticed it has gotten a little bigger since then.  Thank you so much for taking time to help me.

[pitcrew]

The first time I had 3 positive nodes. Dose dense chemo (every 2 weeks instead of every 3) AC & T, had to quit Taxol after 1st treatment. No radiation. Triple negative meaning er-, pr- and heu2 -. Good luck, I found the best way for me to continue the fight was to be very proactive in my care. I think at first my doctors didn't like it much but now I think they kinda like it because I do alot of my own research. Keep an eye on that lump. Best wishes. I'm here if you have any more questions, always happy to help!

[pitcrew]

One more thing. My doctor does not do the CA blood tests. I had a known active cancer and the test he ran came back totally normal. He said they are not a good indicator because they are not reliable. Some people it works, others it doesn't. The one thing I wish I would have done differently in the beginning when I was first dx, was insist on scans. They performed NO scans on me because I had no symtoms. Which I believe had they had performed scans in the beginning, they may have found the cancer in my hi0p bone. I think its been there for awhile.