Recurrence after bilat mastectomy?

MinusTwo, Did your MO order an ultrasound before the PET scan? If so, what did the ultrasound show? It seems most MO's don't order a PET scan before doing other investigative tests prior. It's great though that you got the PET scan! I know of one woman who had BC, had a PET scan a few years later and it showed cancer in her thymus gland. It was completely unrelated to the BC, but a very difficult cancer in itself.

The radiologist who examined my ultrasound scans and then came in and did an exam and ultrasound himself told me that he could have a surgeon 'feel it' but his opinion was what I already shared. He said he couldn't see 'anything' on ultrasound or in the mammogram so he felt good about it.

Chostrochondral cartiledge does not show on ultrasound. My lump is still there but I'm comfortable with his explanation, even though it's odd. It's confusing to me why I and the MO would be feeling cartiledge under the implant. I'll ask her about it when I see her.

My BS and Oncologist are also both very anti-test.  My BS believes the ultrasound is a very good tool but I worry that it can't view the muscle and other aspects of the reconstruction.  I have had two breast MRIs in four years (had to beg for) and the reports are negative.  Having said that, my original cancer was completely missed on all imaging and the only clue was my persistent pain.  If my BS didn't trust my gut and do an open biopsy that I actually drew the line where the pain was...I have no idea when the imaging would have demonstrated the cancer.  It's exhausting having to stay 10 steps ahead of this beast (disease).  My heart breaks for women denied testing due to their insurance or lack there of.

MinusTwo, I had to Google ULS biopsy. So you had an ultrasound and they did a biopsy after the BMX & before the PET scan? Amazing they did one 4 months after a clear MRI? Very impressive, don't you think in retrospect or not? I'd really like to hear more if you care to share how that happened. Meaning about the process. It's hard for me to remember all the steps of my original DCIS dx and surgeries, and I realize your journey has been a long one. I don't want to probe too much...Am trying to follow your journey.

4mykids, yes, I was happy the radiologist came out and did the exam himself, (I was very glad he actually used his hands and not just imaging) but I must share that I'm seen at a cancer center in a large city. The radiologist is only seeing breast cancer patients, so am guessing this is more common than not in this facility. The MO there felt the lump herself and noted it as a 'palpable mass' so that's a good reason for a oncology radiologist to present himself when the tech doesn't have a finding.

He used the word 'inflammatory' and I said 'I feel inflammatory'...I'd also reported severe rib pain on the cancer foob side. Rib pain is also found in non-cancer patients and is an imflammatory condition known as costochondritus. I'd reported that to the MO and am guessing it was in her notes. That's what I meant by feeling 'inflammatory...the rib pain'...Not the lump.

Bottom line...I'll be watching this cartilage lump. As the radiologist said, 'we can have a surgeon look at it'...But the fact that it was not 'seen' on ultrasound or mammogram (I didn't even know they did mammograms of implants!) was significant to me.

I'll also be reading more about other peoples experience. That's been a great teaching guide.

Makes sense. That's how I was dx with IDC. I had a core biopsy,and it was also ultrasound guided. I just wasn't familiar with the acronym ULS.

I didn't realize that mets to lymphs was stage 111B, I assumed any mets was stage 4.

Radiologists don't usually do mammograms on implants, but as I said this is a large University cancer center with 5 MO's who treat BC patients only. They do a mammogram on a breast implant if they find a lump and are having trouble imaging it on ultrasound. They put a marker on the skin surface and put very light pressure on the implant as a secondary way of imaging. They said they do it 'all the time', so it's nothing like a regular mammogram and they certainly don't do yearly mammograms on implants after BMX. Just another form of imaging without advancing to CT or MRI.

Hope you're doing well now and feeling good!

LBeee is correct about the staging. I am Stage 3C for a number of reasons. The new cancer in the lymph nodes was finally called a recurrence (even though I no longer have breasts) and not mets

I had a micromet in my lymph node. I was still considered Stage One. The micromet was so tiny they considered it a negative node.

I think they are common. It's where an internal stitch does not dissolve completely, so your body makes scar tissue around it.

barbe1958,

Was your cancer before invasive or Dcis? Lcis

Uggg Barbie, am so sorry you're dealing with this.

Am glad that they removed the lump when the biopsy said 'no cancer'. Can't imagine why the biopsy didn't show it, but it goes to show that anything can and does happen.

Sending good thoughts...

was ur original diagnosis in 2008 invasive

Barbe - I so remember you when I first joined the boards you were so helpful and encouraging, It breaks me heart to see you recurred. Correct me if I'm wrong but I remember you saying that you had lots of bumps and lumps after bmx b/c of scar tissue and they didn't really seem to bother you, what was it about this "lump" that lead to a biopsy? Did you go straight to bx or did u/s or mri read the lump as possible cancer? Hugs, Jill

Hey Barbe! Nice to see you, but not for this reason

Good, good. You been making anything interesting lately? I'm finishing up hand piecing a LeMoyne star top & getting ready to start a La Passacaglia English paper pieced one. I have officially lost my mind...it will probably take me ten years..

Jill, I had 4 lumps total taken out. It was one in my abdomen that caught their attention the most, so I had them all taken out with just local freezing. Strangely all 4 had DIFFERENT pathologies! Most docs will just say "lipoma" and blow it off, but none of my 4 were that. Don't even remember what they were, but all benign. This new one they tried to say "scar tissue" but I've been dead flat for 7 years and knew this new lump was different. I don't check all the time and did it casually and was surprised to feel a difference. I had my DH check without saying anything first and he felt it, too.

Thanks Lucy. I still have a long way to go to find out how far it's spread. The biomarkers aren't even in yet to find if they have changed. What is frightening me a little bit (okay, a lot!) is that I've had vertigo for about 6-8 weeks now. Enough that I can't shower, I have to bathe.