Recurrence after bilat mastectomy?

funthing42

Hi crazy life x3. Just wandering how your doing?.

texas94

MinusTwo- I had to let you know I still have my 410s! A very talented young plastic surgeon at MDA laid out a plan to patch the large whole in my implant pocket left during my ANLD and breast tumor removal. My RO said he could radiate around it if plastics could work his miracle. My surgeon came out of the O.R. absolutely amazed at the plastic surgeon's feat. Now I'm hoping radiation will be kind to my 410s. . PM me if you have any rads tips, especially if you had it at MDA.

funthing42

Hi smldavidson,

I had recurrence x2. 2009 dx then 2013 b/l mastectomy and chemo two months after finishing it came back in the skin locally 2014.

Sorry to here this happened. I never believe this it is such crap thing.

MinusTwo

texas94 - Fantastic news. I did indeed have my rads at MDA after ALND - but at the Katy campus. The RO was Dr. Elizabeth Bloom and as far as I'm concerned, she's a miracle worker. Luckily I only had to do 5 weeks and got through it nicely. I think 40 greys but I can look it up if that doesn't make sense. The 410's are still in place & happy. I've had some "radiation fibrosis" but I'm in PT out there and the scar tissue is breaking up nicely. Good luck. Please do let me know how it's going.

Bren58

Texas and MinusTwo, so glad to hear that you both were able to keep your implants! That is great news indeed

KBeee

So I have a lot of reading to do here to catch up. Had nice small 1.9 cm tumor in 2013, sentinal node negative. Did BMX and TCx4. Did chemo because of my age, despite low oncotype. Diagnosed yesterday with local recurrence. I am assuming scans will be ordered to make sure it is just local. Head is spinning right now. don't even know where to start.

texas94

Bren58- Getting to keep my implants is one big bright spot in the middle of a lot of not good news. I'll take it!

KBeee- Hang in there. No one ever wants a recurrence, but a local recurrence is a HUGE blessing. "Local" keeps you from being true Stage 4. I'm so sorry though. This recurrence business is a very scary thing.

MinusTwo

Kbee - so sorry to hear about your recurrence. I didn't have chemo the first time since I had "only" DCIS and SNB were clear. Still - to have everything NED & then discover recurrence is a mind-bender. My local recurrence was chest wall. I was able to have chemo, more surgery, more chemo & rads w/o losing my original implants. As Texas94 says, local is likely better than mets, but I know you're asking "what's next". People keep saying to me "it's over, put it aside and get on with life". Well, I did that the first time. It's not so easy the second. Do keep us in the loop with the testing. Hugs.

KBeee

I said local recurrence because that's where I found it...same spot as original. I get MRI results tomorrow to determine if it's in the nodes and then probably more scans next week. I am "hoping" it's just local.

I appreciate the kind thoughts. And I agree Minus Two, it's not going to be "over" anytiem soon!

babs6287

I was just diagnosed with a recurrence- don't know for sure if it's local or not yet. I had my left MX 8/2012 followed by AC and then T and then 33 radiation txts and arimidex. Had a rt PMX with recon 8/2013. It was a bumpy road-infections, cellulitis TE removal, FG, more cellulitis and FG and finally all seemed good in 10/14 when I had a rt exchange and mastopexy and a VERY small implant on left. (FG made my left side so much better)

Went for my regular MO check on 1/18 and my blood markers were both more than double so had PET/CT scan which showed "enlarged" lymph nodes. They did a BX on the rt which was negative. MO didn't want to stop at that so did a left clavicle lymph node BX and I have BC again. I see her on Tuesday to get all the info.

In between, I went to get a new job and got a great one- because I was finally finished-I now know you're never really finished with BC.

Babs

MinusTwo

Oh Babs, I'm so sorry about the recurrence. Such a kick in the head. Please keep us updated as you talk to your MO and plan new treatment.

Bren58

babs, I am so sorry you are are dealing with a recurrence. Please keep us updated when you know what you are dealingwith (((hugs))))

lexie5

I've had pain in my armpit for a couple weeks where I had cancerous lymph nodes removed in 2010. I'm scheduled for a yearly screening mammo this afternoon but since I've had a double mastectomy they just do a frontal pic of the implant. So I called my oncologist's office and told the nurse about my pain and said since I'm going for the mammo anyway maybe they should do an ultra sound at the same time to look at my armpit. She talked to the doctor and he said lets just see what the mammo shows. WTF!!! Can a frontal implant mammo show armpit lymph nodes? Sorry. Frustrated!

Bren58

lexie, I did not think they did mammos if you had a BMX. After my BMX in 2000, I never did have another mammo. I think I would push for the US, but that's me because my armpit is where my BC came back.

lexie5

Because the mastectomy on my non-cancer side was tissue sparing my Dr. has ordered a mammo every year. It's not quite the same as a regular mammo. They don't really squish you. Yesterday I asked the tech if any lymph node issues would show up in the pics and she said yes. So now I guess I wait for the results.

Anonymous

Interesting. I had tissue sparing...even nipple sparing! ... and I don't get mammos on my non cancer side. I'll ask my MO about that next time. Interesting.

SchoolCounselor

I'm so sorry about your reoccurrence ladies. Kbee we were on other forums together That sucks. I noticed the tumor changed status as well. Little bugger..

Hang in there!

klanders

Need some advice from the experts - which is you!! I had a bilateral mastectomy with immediate DIEP reconstruction in 2013. I was HER2- so I didn't need chemo. Now, two years later I have two new cancerous tumors close to one of my scars. It is near the skin and towards the outer part of my left breast. (I've had PET scans, CT scans, MRI's and there is no metastasis.) I've seen two surgeons and they want to do two very different lumpectomy surgeries.

Surgeon 1 - She is planning to go in through my old incision and remove the two tumors and the part of my flap closest to the tumors so that she gets clean margins. She is also planning to do lymph node dissection. She says she won't take all the lymph nodes but just what's necessary. I will come home with a drain that I'll have for a couple weeks. Chemo will be decided based on lymph node biopsies. Recovery will require PT for lymphedema avoidance.

Surgeon 2 - She is planning to make a new incision, remove the two tumors and the skin just above them. She doesn't think she'll need to cut into my flap. And she says definitely no need to remove lymph nodes and no chemo necessary. She says I'll be up and about the next day.

Of course, both ways I will be having radiation.

One nurse I spoke to mentioned that the flow to the lymph nodes is cut off after a mastectomy so I wouldn't think the cancer could even spread there. Can any of you comment if you've had a similar experience? Thanks!

MinusTwo

Klanders - I had a bilateral mastectomy for DCIS w/clean margins & 2 clean nodes on each side. 2 years later I had a lump under my collar bone. ULS biopsy showed IDC & probably in at least one lymph node. Mine was not a metastasis either, but a "recurrence" in the chest wall area - even though it was now IDC instead of DCIS. My BC also went from HER2- to HER2+ so I had no choice but neo-adjuvent chemo & then a lymph node dissection & then rads. Your lymph system is compromised with MX, but not totally shut off. ALND will further impair the lymph system & you'll have to learn to move the fluid toward the groin - but just because you have ALND you still might luck out & not get LE.

Personally I would not feel comfortable w/o the node dissection with future chemo to be determined based on those labs. I have 410 implants and my BS was able to cut out clear margins just to the edge of the implant so I didn't lose that reconstruction. Sorry I can't speak to a DIEP.

Below is the Wiki definition of a lumpectomy. If you have no breasts, I would think it would be called something else. Lumpectomy is a surgical removal of a discrete portion or "lump" of breast,

Hopefully someone with a DIEP will jump in. Wishing you the best & Please keep in touch.

Bren58

Klanders, Like Minustwo I also had a BMX for DCIS and had a recurrence/new primary. Mine was in the lymph nodes under my right arm. So like MinusTwo I went from DCIS to IDC. I had implants not flap recon because I was not a good candidate for the flap, so I can't speak to that part. BMX greatly reduces the chances of a recurrence, but it does not eliminate the risk.

You have 2 very different options presented to you and it is a hard decision to know what is best. You said that there was no metastasis, So I am assuming that you meant in other parts of the body like bones, or liver. But did any of the lymph nodes light up on the PET, MRI or CT?

I would also question surgeon 2 telling you that you definitely won't need chemo as there is really no way to know that until the pathology is done like surgeon 1 said. Just because you were Her2- the first time does not mean that you will be Her2- this time. Minustwo and others have gone from being Her2- to Her2+ with a recurrence. And Her2+ means you will need chemo.

And of course you can always go for a third opinion. I am not the only one that went to 3 different surgeons before making a decision about the surgery I was comfortable with and the surgeon I was comfortable doing it.

Keep us informed on what you decide to do.

TwoHobbies

klanders I did have another sentinel node mapping with the recurrence. i came out of the mapping session with marks all over the place and I was in a panic that I would have to have all those removed. But the surgeon said most were "dead ends" and I only had one node removed under my collar bone, which was negative. So I'm unclear if your surgeon is indicating an axilary type removal or looking for new sentinel nodes.

I was given chemo because of a study that had come out of San Antonio, although frankly I didn't find the study that compelling for ER+ when I read it. There was a clear benefit to chemo for those with triple negative but less so for ER+. I know it was written up on this site. If I can find it, I'll edit and post the link.

OceanSky

Hi All,

Had a double mastectomy 16 months ago for IDC.

Found a lump and have had pain. Saw MO yesterday and am having an ultrasound and probable biopsy tomorrow. Am feeling sick over it.

Have been reading this entire thread and many women are saying their lump was like a beebee. Mine is large and very near where the largest tumor was originally.

Very upsetting.

katcar0001

OceanSky, I can understand why you are upset. I am sending prayers out to the universe that it is fat necrosis or something equally unthreatening and benign.

KBeee

Oceansky, Keep us posted. My recurrence after BMX felt like a frozen pea under my skin. Hoping yours turns out to be a lump of scar tissue, or something else benign. (((Hugs))). Waiting is the worst

OceanSky

Thank you for the well wishes.

I had a good tho unusual result. After an ultrasound and additional imaging with mammogram on the implant, the oncology radiologist came in and felt the lump with his hand. He felt it with my arm by my side and again with it above my head...a few times. He then went over it himself with the ultrasound.

It's an odd one. He said the lump is a chostrochondral junction. It's cartilage. I asked him in detail why other people don't 'have' this. He said everyone is different...'some people have more flesh.' Guess I'm boney there but so are lots of women. Told him I was thrilled to hear it, and I am. It's confusing though.

I Googled chostrochondral junction and breast lump and I found a few posts but not many. One women went to soooo many doctors and had so much imaging. She refused to believe hers was benign.

I'm grateful, and hope other women who find a lump like this will have the same odd result.

KBeee

Sounds like great news

4My3kids

I am 4.5 years out from a double mastectomy for multifocal DCIS, LCIS and IDC.   My IDC was multifocal, in one quadrant, several focuses ranging from 1mm to 2mm.  Grade 1.  Over the years I have had several lumps/bumps evaluated.   Most recently, last December 2014,  I found a lump in the cancer side but not cancer area.  MRI and 3 ultrasounds were negative.  It feels like a marble sitting in the muscle.  My question is has anyone had a confirmed recurrence that did NOT show on ultrasound and MRI?   My BS and Oncologist are confident I should not remove it, but it worries me.  I understand with the implant it's not a simple task.  Any advice is appreciated!

KBeee

Can they needle biopsy it with ultrasound? That's what they did with my last lump.

I did have one of my 2 recurrent lumps not show up on MRI, but it was a pretty small lump.

4My3kids

KBeee, the surgeon said he cannot needle biopsy if it's not showing up on ultrasound.  I suppose he could take me in the OR and open biopsy.  I know the implant is also a concern and he doesn't want to cut without evidence.  But you can feel it..,which is why I don't get why you cannot see it.  I even drew the spot with eye pencil for the ultrasound tech.  It's been over a year following it and it hasn't changed in size but I can't ignore its there.  I see the surgeon again in three weeks so I am trying to gain knowledge to question him.  I had extensive DCIS, I just wonder is some tissue remained.  I got all my reports from radiology and they all say it's a normal exam.  Like everything with this disease...frustrating and scary.

MinusTwo

4MyKids - If they can't do an ULS needle biopsy, how about a PET/CT? That will show up "hot spots", which I believe usually indicate cancer growth. Many docs are not in favor of them because it produces more radiation than a regular CT, and can cause anxiety in the patient & may provoke other tests, which may be unnecessary. But that's what confirmed my re-occurrence.