Recurrence after bilat mastectomy?

I just replied on a different post. I recurred in 2 spots 14 months after finishing chemo. My second time it was very aggressive. It was frustrating to have to do chemo again, but I knew chemo was my best chance to be cancer free long term. I thought of chemo as my ally in my fight for more years with my kids. I tolerated it very well, and so far, so good. I still see MO every 3 months. I just saw him today. I do have to admit that the second time was more challenging mentally for me. The fear has lingered longer this time, but it is not always on my mind. How are you ferling

NTK2,

I was scrolling through and saw your post. I also had double mastectomy after DCIS with no further treatment. When my cancer recurred it was in the lymph nodes under my arm. Just be sure to continue your self breast exams and check those armpits and to the clavicles and along the sternum, it really is impossible to removed every breast tissue cell. I had a false sense of security after a double mx - I think that's natural. Bless you and keep up those breast exams :-)

MommyAtHome - Don't want to scare you, but I would definitely call & see if they can fit you in now. I had a BMX for DCIS with clear margins & no other treatment. When I went in for my two year check, I had a lump under my collar bone. Oops - it's in my lymph system and now it's IDC. And also HER2+. Unfortunately, TCHP chemo didn't totally remove the lump. Fortunately my surgeon was able to do ALND w/o getting too close to the implant, so I didn't lose those. Then I had AC chemo and rads. There are enough of us that it's always worth checking.

A big thank you to all of you who have shared your stories on this multi year thread... reading it has been relevatory and helpful. I had a DMX for multi focal DCIS, 2-1/2 years ago. I had an "unknown" margin (2 large hematoma from biopsies damaged tissue), I have a PALB2 variant, and my reconstructed breast seem to loooove growing lumps, of all kinds. I have large areas of scar tissue between my implants and skin, much of which can be seen through my thin skin.I have a line of three large, edamame feeling lumps between my ribs, along my sternum - likely oil cysts/fat necrosis. Now, since my last ultrasound (early August), I have found a hard, fixed, pebble close to the area where my DCIS was. And what feels like a clump near my lymph node scar. For the first time, I'm a bit nervous. I understand my low risk, and the odds being in my favor - when do you push for testing? I am scheduled to have a follow up in January - I'm guessing that I will hear the stock answer (assumed fat necrosis) and get the "DCIS eye roll".(sorry for the book, and thanks for listening - my first post!)

Thanks so much, KBeee... (I tried to respond earlier, and it disappeared - so hopefully this won't double post! Lol.) I know in my heart that I need to get it checked, it's just that I've had to have lumps checked, over and over. I knew that those were just scar tissue & fat necrosis, but I feel like my doctors think I'm crying "wolf!" I have a full physical with my PCP on Wednesday, I'll have him feel and evaluate them, first. It sucks - if I had never had breast cancer and DMX, I would have gone in a month ago, when I first felt them. I will push harder - almost every woman that I know who has had recurrence after DCIS or stage I, has first been told that it's nothing. It's hard finding balance.

Hello ladies ❤️ Thought I'd post this question here for input.

Going in for a "lumpectomy" on my mastectomy Friday (One year out from original diagnosis/MX and 6 months out from chemo). Lesion looks to be 2-5mm. My husband and I are supposed to be going home (Europe) for xmas. Our flight out is exactly one week after the excision. BS says I should be OK to travel since she's only taking some skin and maybe a bit of muscle. She'll send me with prophylactic antibiotics (I have a sleeve and glov for traveling due to hand swelling during chemo). Wondering if the surgery/recovery is easy enough that this is feasable or if we should cancel our trip. Thoughts/recs?

Thanks, Peace! I traveled to EU 5 weeks post mastectomy and just did a 5 hour flight 3 weeks post reconstruction and was fine, really. I’m not sure why I’m so worried about this recurrence excision on the mastectomy. Mostly worried about infections/swelling/ lymphedema. I have no idea if they will have me wear a compression bra again.... (Doc said no drains. Surgery will take 20-30 mins/no general anesthesia)

Manuella, I had a surgery unrelated to cancer, but flew to England 2 days later. I had not troubles.

EmCee, Can you ask the doctors to do Oncotype or Mammaprint to help definitely decide if chemo is warranted or not? That would ease your mind. I mention that because I had one doc at a major medical clinic tell me I absulutely did not need chemo. My gut told me otherwise. My local MO agreed with me but ordered the oncotype for more info to help make sure we were making the right decision. It came back quite high, which surprised him (and the other MO who had recommended against chemo, but changed his tune when he saw the results).

EmCee - I am so sorry that you are dealing with this. How did you convince your doctors to biopsy what they thought was fat necrosis? I am scheduled for an MRI in January, I have new lumps (again - this has been ongoing - each set of lumps have been different, in size, location, and feel). I had my PCP check me out, yesterday. He said that one new one doesn't worry him, but the new lumps in my armpit need to be checked. I am so tired of hearing "I think it's..." and having to accept that. Did you have to push for a biopsy? I will be thinking about you, as you navigate this. Oncotype and/or mammaprint can give you more information - fingers crossed that chemo isn't necessary.

I have an appointment with my BS in January. I am struggling with the idea of asking to be seen sooner - because I have had so much scar tissue and fat necrosis. "It was just DCIS" keeps echoing in my head. I had to change BS once, already, because my surgeon didn't examine me at any of my follow up appointments. And I was incorrectly told that "nothing" wasn't showing on ultrasound, when I had multiple, large oil cysts. My new BS wants an MRI next month, because I'm 2-1/2 years out from DMX. I think that I will call tomorrow, to make sure everything is booked. I feel confident that I will told that it's scar tissue or fat necrosis, and that a biopsy isn't necessary. Glad I'm getting the MRI

Lomo, try to get the lump checked sooner rather than later if only for your peace of mind. I sat outside my BS’soffice until she saw me, every 30 mins I’d go tell the assitant: still here (I then got an ultrasound and biopsy done that same night). I had called to ask for an appt and they could “only fit me in” 5 days later.). It’s probably nothing but for a cancer patient the waiting is total anguish and not acceptable in my opinion!

Manuella - yes I was staged differently. I had a BMX with reconstruction for DCIS. After the recurrence two years later I was staged 3c. I did chemo and then had auxiliary lymph node dissection surgery on one side, then more chemo. The doc was able to remove the diseased areas w/o effecting my implant, although she wouldn't guarantee it before the surgery. Then I had radiation. The implant on that side is "higher & tighter" since rads pulls the muscles, but no other problems.

Yes I have some breast & truncal lymphadema. I worked with a really good certified LE therapist for several months. She broke up the cording & taught me to do manual lymph drainage. I went back for a "tune up" a year later. I wear sleeves & gauntlets when I'm doing repetitive exercise or flying, but other than that it hasn't spread.

lomo,

Thinking about you. Let us know what you find out. I have been in the same situation. My doctor told me to stop worrying and don't do self checks. She said what til your six month and I'll do them. Ya, not going to happen. Each 6 month appt I've been having to have fluid aspirated due to fat necrosis caused by fat grafting. The first time she sent it to pathology but each time after that she's said no need to. I go back dec 18 for my 6 month and if I need it aspirated I'm going to request it be sent to pathology.

Thanks for the pointers - I think the monthly checks make sense. I just moved my appointment with my BS up to January 4th. I am trying to feel proactive, instead of foolish - when I asked if I should come in earlier than scheduled, I was told,"whatever you feel comfortable with..." Ummm - I want my doctors to be at least a little bit involved! Lol.

Sorry you are dealing with the screwy test results, but glad that there is a plan to assess them. Glad you've gto a great team!