Recurrence after bilat mastectomy?

Barbe

not sure if its axilla that would be higher than the area it was in, 

I hope your nodes go back to normal, so you dont have to have a biopsy.  never ending

Sue - me too.  Two years after BMX for DCIS I found a lump under my collar bone & it was IDC.  After 2 rounds of chemo & ALND, I recently finished rads & will be on Herceptin for a year.  I've declined Perjeta for now until I see if my peripheral neuropathy from the taxotere will ever get any better.  Like Bren, there's no resolution whether it's a recurrence or a new primary or mets.

When you get a minute you might want to fill in the particulars in your profile.

Sue - A doc from MD Anderson swears that Perjeta doesn't contribute to CIPN, but Perjeta's web site says it may.  I think it's just too new for anyone to be sure. I'm not really sure the % of docs who understand chemo neuropathy is too much greater than the 5% who admit to having some LE instruction in med school.  I did take Perjeta with TCH for 6 treatments, just not taking it for the follow-up year.  70% of patients have improvement in neuropathy over a 2 year period, but as my neurologist explained - you may get some better but you'll never get back where you were.  I just want a base line before I start Perjeta again, if I can get there before more problems.  My gut feeling is I should have refused the 6th taxotere and that it's not the Perjeta at all - but that's not based on any scientific evidence.

For those with PN, are you being offered Lyrica and/or Neurontin?? Horrid to think yet another side effect is so prevalent!!

Gabapentin can sometimes cause weight gain which most of us don't need! Doctors will deny it, but I was on it for 5 months. Thank God that I was on a NO carb diet while on it. My weight stayed exactly the same, but my brother lost 75 pounds!! He couldn't believe that I didn't lose an ounce but at the time I was just glad I didn't gain any. They really have to come up with some new drugs...sigh. A lot of the problems are the fillers they use when they mix the drugs! Well then, change the fillers!!! Sheesh!

My best hopes and wishes for clear margins, Jamie!

Completely freaking out! I've had 4 years of complications from IDC Regionally Advanced, triple positive, all lymph nodes on right side. Had 6 TCH, then BMX 6/7/2010, no reconstruction, then 30 rads, continued Herceptin for year, on Arimidex now (switched from tamoxifen, suspicion of uterine cancer so had radical hysterectomy). Been NED since 9/1/2010. Now have significant swollen enlarged lymph nodes in left clavicle and arm pit. They are getting worse every day. They are also very painful, which wasn't the case with the right side. I usually never worry, even when my doctors do... This time I'm super scared. I cannot put my family through this, again. I didn't even tell my husband that I've had docs checking it out (2 weeks), but yesterday I almost started crying and did tell him. Neither one of us said anything, just sat there a few seconds and then I changed the subject. Anyone had this kind of swelling, pain in non cancerous side after BMX? Arg!

Getting, your nodes could be reacting for a number of reasons. I DID have this happen to me and was sure the cancer was moving up to my brain! Even the radiologist who did the biopsy was freaking out and said that if the results were inconclusive, to come back for another biopsy!!! Turns out, it was my thyroid growing a nodule that pissed off my system!! You have to get it ALL checked out. Good luck, sweetie, we are here for you!

I did have a tiny cold, but no fever and didn't last long, about a month ago. I do my own manual lymphatic drainage for lymphedema. My lymphatic specialist was alarmed at the swellings and visible nodes last week and told me NOT to do any lymph massage, in case I spread something around. I am starting to believe it's a systemic problem because now other lymph areas are acting up. Even my left neck and ear hurt. Bizarre...

tomorrow morning. We live in a very rural town (Steamboat Springs, CO) and the nice thing is getting test results very fast. I went from finding the first lump (Christmas 2009), through tumor board out of town, and started chemo all within one month. I always feel so awful for folks in big cities who wait weeks for results. I'm sure she'll send me for ultrasound, tomorrow, and if a biopsy is needed they will do it at the same time. Of course if they believe it is malignant, I'll head to the specialists in Vail for onco typing, treatment consultations, etc. Then I'll go to "the big city" for a second, and third opinion.

Getting I hope you get some answers today and they are much kinder than the beast. 

How did she rule out infection in her office? Praying for you - and please report back here!!!!

Jaime, the fact that it was IDC means there was an invasion from the ducts into the surrounding tissue. They may have been counting the margins when they gave the overall tumour size as that is what had to come out. What comes out and what was seen on testing and what is actually cancer always differs. Glad you got clean margins, though! What's the next step?

I am going for to see a surgeon for a lump along my incision line that has been there for awhile , 5 mos. i am 1.5 yrs post bilateral mastectomy.

bertilda, breast cancer tumours double in size every 180 days. That's 6 months. Has you lump doubled since you found it? I'm betting it's either fat necrosis or a stitch....keep us posted!