Recurrence after bilat mastectomy?

Options
1303133353638

Comments

  • KBeee
    KBeee Member Posts: 5,109
    edited October 2017

    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
    NTK2 Member Posts: 2
    edited October 2017

    Hi Laura, Sorry to hear about your recurrence. I had a double mastectomy a little over a year ago, and like you no rads, chemo or meds. My doc said it was a low I think only a 2% chance of recurrence after removing all the breasts in DCIS. Negative sentinel nodes. It still concerns me though when I see what others are going through, even though I don't know all the details of the others, or type, stage, etc. I look to this forum for other information and situations, it is really a help. It still concerns me about recurrence and how would I know since there is no mamos. How did you detect your recurrence. Hope things are going well for you.

  • luckylegs64
    luckylegs64 Member Posts: 47
    edited November 2017

    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
    Mommyathome Member Posts: 1,111
    edited November 2017

    hi. I also had dcis... diagnosed in 2014 had double mastectomy and doctor says no chance of reoccurrence I need to not worry.. not going to happen. I always check and feel for lumps. This weekend I noticed a sore lump in my armpit. When you had recurrence in lymph nose was it painful? Not sure if I should wait til my 6 month appointment in December or set up appointment now.


    I've had fat grafting done which has left me with little "lumps" that fill up with fluid and I have to have aspirated every 6 weeks. It seems like once diagnosed, you're always thinking of the possibility of it coming back.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited November 2017

    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.

  • Janett2014
    Janett2014 Member Posts: 3,833
    edited November 2017

    Nov 4, 2017 10:00PM Mommyathomewrote:

    "hi. I also had dcis... diagnosed in 2014 had double mastectomy and doctor says no chance of reoccurrence I need to not worry.. not going to happen."

    Wow, that seems like an irresponsible thing for a doctor to say! I could understand if he/she said it's PROBABLY not going to happen.


  • lomo68
    lomo68 Member Posts: 9
    edited December 2017

    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!)

  • KBeee
    KBeee Member Posts: 5,109
    edited December 2017

    If these feel different, particularly feeling like pebbles, call to be seen sooner and request definitive diagnosis. My docs were 99% sure my recurrence was scar tissue. Thankfully I wanted to be 100% sure. This lump feels different to you. You know your body. Find out what it is. Hoping it is benign! Sorry you have to deal with tjisvfear

  • lomo68
    lomo68 Member Posts: 9
    edited December 2017

    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.

  • EmCeeEssEmDee
    EmCeeEssEmDee Member Posts: 4
    edited December 2017

    Thank you all for sharing your experiences. I was diagnosed in October 2015 with IDC, grade 1, and DCIS. Because of family history (my mother died of ovarian cancer seven years after surviving breast cancer) and because of dense breasts that had prompted scares in the past, I opted for bilateral mastectomy/simultaneous reconstruction, plus tamoxifen. In July 2016, I had my ovaries and fallopian tubes removed for good measure.

    Just this past spring, 2017, I felt an odd lump in my skin right where the original tumor had been. I had several ultrasounds and my oncologist was just positive it was fat necrosis. Nope - punch biopsy in August 2017 showed it was the same cancer, grade 1, though not as strongly estrogen and progesterone positive this time, and still HER2 negative. Tamoxifen failed for me.

    In September 2017, my surgeon excised the tumor, which was about 5 mm. I now am on week five of six weeks of radiation. I will begin a new anti-hormone drug soon. My second diagnosis prompted the meeting of tumor boards at two great hospitals (my oncologist referred my case to his tumor board, and then I got a second opinion from another oncologist who referred my case to her tumor board). A minority at each tumor board thought that I should start chemo, but the majority decided against it. The split in opinion has weighed heavily on my mind. A few weeks ago, I had a substitute radiologist exclaim to me that she recognizes me from the patient data she read at a conference she just attended. :(

    I am really sad to be going through this nightmare again, but I am thankful that I caught it early. I think anyone here who has a question about a lump should get it checked out, no matter what. Mine was a surprise to everyone. Thank you for listening, and best wishes to you all <3



  • Manuella
    Manuella Member Posts: 50
    edited December 2017

    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? :)

  • Peacetoallcuzweneedit
    Peacetoallcuzweneedit Member Posts: 233
    edited December 2017

    Hi Manuella - I traveled to Greece from California one week after my tissue expander was replaced. (it deflated and had to be replaced to preserve the pocket) I had general anesthesia and 1-2hr surgery...I wore a compression bra, gauntlet and sleeve....I had Double MX June 1st so 3mos from that surgery I flew and had another surgery ...now I have not chemo - and that is something to consider...and I also had full bottle of antibiotics that were prescribed "just in case." I had no problems - so I am not sure if we can compare our surgeries - but there are some similarities...

  • Manuella
    Manuella Member Posts: 50
    edited December 2017

    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
    Manuella Member Posts: 50
    edited December 2017

    btw, I had an axillary node dissection during MX and since pet scan came back clear I assume they won’t be doing anything with my nodes (the few that might still be around).

  • KBeee
    KBeee Member Posts: 5,109
    edited December 2017

    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).

  • EmCeeEssEmDee
    EmCeeEssEmDee Member Posts: 4
    edited December 2017

    KBeee, thanks for the advice. I did have that done after the first diagnosis and biopsy, but I am not sure about this time around. I wonder if there is enough tissue to Oncatype? I will definitely ask. Thank you!

  • lomo68
    lomo68 Member Posts: 9
    edited December 2017

    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.

  • KBeee
    KBeee Member Posts: 5,109
    edited December 2017

    lomo, can you check with BS instead of PCP? BD has more expertise in this area

  • lomo68
    lomo68 Member Posts: 9
    edited December 2017

    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

  • EmCeeEssEmDee
    EmCeeEssEmDee Member Posts: 4
    edited December 2017

    Hi lomo68 - I did not have to convince my doctors. They recommended a punch biopsy to put the matter to rest. Unfortunately, it was cancer again. :(



  • Manuella
    Manuella Member Posts: 50
    edited December 2017

    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
    Manuella Member Posts: 50
    edited December 2017

    Wondering if you ladies with a local recurrence were staged differently after the recurrence? Also worried about cosmetic outcome, those of you who had radiation, what happened with your foob/implant? Any lymphedema issue?

    I ask all these questions and I honestly can’t believe I find myself her again :(

    Hugs everyone


  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2017

    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.

  • KBeee
    KBeee Member Posts: 5,109
    edited December 2017

    Manuella,

    I was not staged the second time, because when my PS removed the lump for biopsy, he was "sure" it was benign, so they took it out in chunks and have no idea how big it was. There also were 2 tumors, so it would not have reflected the true disease component. Since implant was under the pec muscle, they took out the lump and excised that part of the muscle to assure clear margins. My implant is still intact. I do have some capsular contracture post rads, and that side is higher and tighter. I notice, but in clothes, I doubt anyone else notices.

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited December 2017

    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.



  • KBeee
    KBeee Member Posts: 5,109
    edited December 2017

    You should do self exams, but do them once per month, not ever day. If you do them daily, you will not detect changes as readily

  • lomo68
    lomo68 Member Posts: 9
    edited December 2017

    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.

  • lomo68
    lomo68 Member Posts: 9
    edited January 2018

    Hi guys - I just wanted to post a follow up. I had a my appointment with my breast surgeon on January 4th. I really like my new BS - she spent 40 minutes with me, showed me all my crazy lumps on the ultrasound, and told me to always follow up on medical issues. I had been feeling like a hypochondriac, she helped so much. And even recommended a new gastro to follow up on my digestive issues and flagged liver function. It made me feel taken care of. 😊 I also better understand what is happening with my scarring and fat necrosis, and why mine are clearly benign, rather than questionable. I have an MRI scheduled for July, (insurance denied one for this month - they want it 3 years from DMX), but we will make a decision whether to do that or PET/CT depending on what my new gastro and my oncologist figure out about my liver function & if they want a more detailed look. I have so many oil cysts, that it would be impossible to biopsy all of them - and the swelling in my armpit could be caused by whatever is causing my screwy blood test results (high AST, high ALT, low vitamin D, low WBC, and huge increase in cholesterol numbers).

  • KBeee
    KBeee Member Posts: 5,109
    edited January 2018

    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!

  • Jadalulu
    Jadalulu Member Posts: 57
    edited January 2018

    RazzMatazz,

    I am curious why they had to take additional tissue if you had a BMX? I thought that they remove all breast tissue when doing the mastectomy? What type of tissue and from what area was removed?

    I am recovering from a BMX performed 1/4/18. I had both DCIS stage 0 grade 3, and IDC stage 1 grade 1 in the right breast. I opted for the BMX instead of a single. Pathology report found Atypical Ductal Hyperdysplasia in the left "healthy" breast, no lymph node involvement, no radiation, no chemo. I saw my oncologist yesterday and he said that it was my choice to take tamoxifen or not as my chance of recurrence is less than 5%. Just trying to make an educated decision on whether to take the drug or not, I am on the fence but leaning toward taking it.

    Thanks,

    Jada

Categories