Recurrence after bilat mastectomy?

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.

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.

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.

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.

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

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

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.

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.

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!

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.

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.

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

Sounds like great news

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.

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.