2nd Time Around for Double Mastectomy & Reconstruction

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Foobmama
Foobmama Member Posts: 12
edited September 2018 in Just Diagnosed With a Recurrence or Metastasis

I was diagnosed with a recurrence of the same invasive ductal carcinoma that I had a double mastectomy and reconstruction for in 2004 and am trying to connect with ANYONE who has been through a double mastectomy twice and has or will go through a second reconstruction as well. Surgery date is March 27, 2018 at 1pm. I am reconstructing more out of annoyance that cancer is trying to take something from me and mine again...family members, body parts of family members, parts of me. Just want to know I'm not alone out there.

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

    What kind of reconstruction did you have the first time? If you had a bilateral mastectomy, there should be little to no breast tissue left. There always can be some cells left behind, which is how recurrence happens. I had that too. In my case they took the tumor area and a wide area around it. They followed that with radiation.

    Sorry you are facing this again

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  • Foobmama
    Foobmama Member Posts: 12
    edited March 2018

    I had complete bilateral mastectomy and 10 lymph nodes removed on the cancer side. My breast surgeon said sometimes there can be a small amount of ductal tissue left in there but I did not have radiation just 4 rounds of Adriamycin. It was estrogen carried and I had already had my ovaries and uterus removed a year and a half prior but was on estrogen because of that. I did five years of anti-estrogen post mastectomy. But other systems can carry estrogen and so some managed to get up there and activate cells. They believe it may be invading the skeletal muscle because it has nowhere else to grow. If so I will do chemo following surgery and then radiation. If it's only growing on the muscle I might skirt around chemo this time and just do radiation. They don't want to begin reconstruction until six months after radiation and this time they will have to take tissue from the side of upper back to rebuild the cancer side. They cannot take anything from my belly because I have no belly muscles protecting me there due to an accident a year after my mastectomy. I had to heal from the inside out for eight months in the hospital after the wreck.I was just curious if anyone out there had gone through a second full double mastectomy followed by reconstruction and what their thoughts were and just generally connect with them.

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

    They might be able to just do a wide excision and take that chunk of muscle; that is what they did with me. I do know one or 2 people on here who had to do a full radical mastectomy second time around, and take the pec muscle. Hopefully one of them will chime in

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  • Foobmama
    Foobmama Member Posts: 12
    edited March 2018

    Thanks for your reply Kbeee. I’m sorry you have been through this again. Sounds like they’re planning full radical. Plastic surgeon will insert expanders in each side and fill slightly during surgery and will start the rest six months after radiation ends. I believe I had one expander first time and they filled both sides of it every week. My memory is more vague about that now that it’s been so long so there may have been an expander each side

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  • Foobmama
    Foobmama Member Posts: 12
    edited April 2018

    Just checking in, Kbeee, to let you know that I had my mastectomy on March 27. They were able to spare some of the skin on both sides and remove old reconstructive implants and insert expanders. They took a large section of muscle with clear margins and so what we thought were two masses ended up being one large mass of 3.1 cm. It had invaded the skeletal muscle and had the potential to feed into the lymphatic system so I will be doing CMF chemo combination for six rounds prior to radiation. Still planning to reconstruct again down the line. They didn’t want to hit me with the same treatment I had first time around and this treatment might not even cause me to lose my hair this time but I could care less about that. Hair grows back! Also wanted to check in and see how you’re doing?

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  • I_Spy
    I_Spy Member Posts: 507
    edited August 2018

    Hey foobmama! I am searching recurrences as I get ready for my appointment this morning with my new bs, and I came upon your thread. KBeee is such a valuable person, isn't she? She has helped me as I've tried to figure out what is going on with me (and I even sent her a private message when she didn't see my thread at first!). I think she is pulled thin on these pages. I just wanted to see how you were doing after having to have ANOTHER bilateral mastectomy (seems hardly possible, right?). I hope you made it through the chemo okay?

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  • Foobmama
    Foobmama Member Posts: 12
    edited August 2018

    I am still in the midst of chemo. I have been delayed pretty much every time due to low neutrophil count. I also had an unexpected surgery again on June 14 to remove the right expander due to complications so that side is flat now. Actually it's concave due to the section of muscle they removed. Not sure I want another expander in there. The expander on the left side is doing fine so eventually we will work on expanding that side. I was delayed yesterday for round five. Will try again next Monday. They are considering not putting me through round six. Will have radiation afterwards. 5 to 6 weeks. No more surgery planned until sometime next year. Doing OK though. The usual bone pain, fatigue, stomach issues and brain fog. But only minimal hair loss this time around. No steroid swelling either. Thanks for checking in with me. I hope you are doing well also. I have kept high spirits and take advantage of good energy when I've had it. Staying as active as possible and still working. I always take a couple of days off when I get my chemo. Moving at a snails pace but still that's better than no pace at all!

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  • I_Spy
    I_Spy Member Posts: 507
    edited August 2018

    Good for you foobmama! We have to be thankful for the little things, right? And the "little" things seem bigger when we've learned to appreciate them. At least I'm not getting chemo right now -- but I don't know what is in store for me. I'm gathering together all of my medical records to take to the new bs in an hour. When I was going through this before, my friends used to say "I pray you don't have cancer!" And I used to say "Don't pray for that, because there's nothing we can do about it. Pray that if I have cancer, they find it!!" So I am there again. There is something wrong -- I have itching and burning in my foobs, the right one especially, and a raised red bump on my right MX scar (and tinier ones on my left). My scars have been healed and gorgeous for three years, so something is wrong. Let's hope they figure it out!

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited August 2018

    Hi Foobmama, I just wanted to chime in since we are peas in a pod on this! I had a second right mastectomy, which turned into a full right chest wall resection with a skin graft. In my case I had a lot of skin metastasis. They also took some of my pec muscle, but it wasn't involved. My BS said that some breast cancers like to invade the skin, some like to invade the muscle, and no one really knows why.

    Anyway, I'm half flat now - or half concave rather - and in the middle of Xeloda. If I ever do reconstruction it'll have to be a flap procedure of some kind, but I'm told that could be challenging because I'm on the thinner side. But I'll worry about that later. I hope you are getting through your chemo well, and I'm wishing you the best!

    And Ispy - has anyone done a biopsy of the new bump or rash area? My skin metastasis presented as several small red bumps, which quickly grew into more nodular bumps. I hope that is not the case for you, but for me it was three small punch biopsies over the tissue expander that confirmed it.

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  • Foobmama
    Foobmama Member Posts: 12
    edited August 2018

    My cancer started growing in a tiny bit of milk duct tissue near my scar. I had double mastectomy first time and still have left expander in after this 2nd one. Can't start work on it until radiation is completed. Still on fence whether to have another expander put in right side since I had so much trouble with it and had to have it removed this time. Thank you for joining the discussion. I'm always looking for someone with similar experiences because it was so hard finding anyone who would had a unilateral mastectomy a second time let alone someone who had a double twice. People think once your breasts have been removed that that's it for getting cancer. So many don't realize it can come back to the breast or another part of the body. I am also fairly small and was supposed to have latissimus flap since I have no belly muscle to work with due to an auto accident years ago but they went ahead and put expander in and felt that since they didn’t take as much muscle as I thought they were going to I might be able to expand the normal way again. If I end up having to have a flap I will definitely not re-construct that side. I will just do the left.

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  • Foobmama
    Foobmama Member Posts: 12
    edited August 2018

    I’ll be praying for you Isby. I did pray that there was no cancer because I didn’t know yet and would’ve preferred not to have it but I also knew that if I did have it God would get me through it. My daughter had a lump as well on her cancer side so we went to the doctor together. Weirdest mother-daughter experience I’ve had I believe. Fortunately hers may just be an oil cyst and it is getting smaller and they are just going to watch it. Please post when you know what your results are. I’d like to continue following. Take care Sis!

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  • I_Spy
    I_Spy Member Posts: 507
    edited August 2018

    buttonsmachine and foobmama I hope I don't join your club, but it is nice to join the discussion! I'm very interested in recurrences in the skin or near the scar, because that is what this would be. I saw the PA in the new bs office and she was not my favorite person. She was the dismissive "this is nothing" type of person, even before she looked at my foobs! She walked in the room with that attitude, even telling me: "You've had every surgery that you can have." Well we know THAT isn't true, right? I have a sharp tongue but I held it to get through the appointment. She said she could do a punch biopsy of the biggest lesion on my scar, but she hoped she wouldn't pierce my implant!

    After that I was trying to get out of the room without her touching me. She finally came up with I could come back in a month and see the bs and if it was still there the bs could do the biopsy and I was like "sold!"

    So question for both of you: Did you try cortisone cream at first? Did it improve your symptoms at all? I tried it a couple of weeks ago and it burned, but the PA told me to cut it with aquafor. I'm worried it will reduce inflammation and hide my symptoms, but that is probably not what would happen if it were cancer, right? I would LOVE for this to not be cancer, obviously! But if it is cancer I want them to find it.

    I have three masses in my left foob on ultrasound that they think are lipomas, follow up in 6 months -- but I've never had lipomas in my boobs why would I start now when all the tissue has been removed? So I have a bunch of questions and no answers.

    Can you guys tell me more about your progression? Was the recurrence seen on MRI or ultrasound? Did you try cortisone cream first?

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

    Foobmama, I've had a crazy last few months, so I had not been checking in as often. You've been through so much! How are you doing now? I hope you are tolerating CMF okay.

    So far, so good for me. I had a good check up with the breast surgeon recently. My next MO appointment is in late September, so I am hoping to keep August appointment-free!

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited August 2018

    Hi Ispy, Grr that PA you saw just makes me mad! I had similar experiences and people tried to write off the red bumps for a while as "irritation from surgery tape" and "fat necrosis" among other things. I got the same "you've already had a big surgery" line that you did. After a month or so I ended up seeing a new surgeon who did the punch biopsies right away, and confirmed it was cancer.

    This is where it got tricky for me. Skin metastasis was suspected, and I got a few very different opinions locally on how best to proceed. One surgeon advocated for a very small surgery where we would just remove the visible lumps and some skin. Another surgeon advocated for a much bigger surgery, but basically told me that I needed to go to a major cancer center if I wanted a chance to survive this. So that's what I did. Fortunately for me, the university doctors deal with people in my situation regularly, and they knew exactly what to do and how to do it.

    So for me the recurrence was seen/felt in the skin and around the scar first. The punch biopsies confirmed cancer, but the MRI revealed cancer tendrils reaching much farther than we could see. Also, skin metastasis can "jump" downstream in the blood and lymphatic vessels, scattering new cancer seeds in the surrounding skin, so they took a huge margin - about 5cm out from every lesion on the MRI. It was a huge surgery, and I can't say I love the way it looks now, but I am SO glad not to have cancer staring back at me every time I undress. I would do it again in a heartbeat.

    I never tried cortisone cream on my spots. I REALLY hope you don't have more cancer, but getting a biopsy is the best way to know for sure. (Hopefully the surgeon can do that for you, and not that PA!) If it is cancer, definitely push for an MRI so they can see what is going on deep down, so they don't walk into surgery blindly. I hope that helps and please keep us posted on how things go for you. *Hugs*

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

    ^^^^^^^^ Great advice from Buttonsmachine

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  • I_Spy
    I_Spy Member Posts: 507
    edited August 2018

    Thank you buttonsmachine! And sorry to hijack your thread foobsmama! But hey KBeee is back! ;)

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  • Foobmama
    Foobmama Member Posts: 12
    edited August 2018

    No worries about hijacking my thread. As many of you who want to may jump on! I did not have any skin irritation, my cancer was under the scar in a tiny bit of milk duct tissue that was left over and had enough estrogen to create havoc. I had complete hysterectomy a year and a half before my first cancer but we have other estrogen producing systems in our bodies. Lucky us eh? My tumor was 3.1 cm and very deep and had a little vein in it that had the propensity to feed the lymphatic system so that is why the chemo again. MRI only picked up the hematoma the biopsy caused. Pet scan picked up the tumor but thought it was smaller. Kbee, I am tolerating CMF OK. Bone pain is not as bad as when I went through the red devil in 03 and 04 but worse than when I went through chemo for hep C in 2010. You never know what you're going to get with chemo. It's like pregnancy, no two are alike. Not much hair loss at all this time around. Buttonsmachine, glad to have you in the thread. You've all been through so much. Epsy, I'm praying that this is not cancer but if it is am praying that God will make it the easiest fix out of all the fixes there could be. You women are awesome special. Keep us updated Ipsy! {{{HUGS}}} to you all

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  • I_Spy
    I_Spy Member Posts: 507
    edited August 2018

    Go Foobmama! You got this!

    oh and my screen name is so confusing, but it is actually ISpy, like I am a spy, because I'm a private investigator ;)

    Otherwise people think I'm just a drunk and I'm tipsy haha.

    I don't have a lump so that is the good news. I just have these changes to the scar, including an inflamed red spot almost like a mosquito bite. So I'm watching it. Maybe it will just go away, which would be good but then I'll always wonder what it was! Ugh. We shall see what the next couple of weeks brings for all of us, right?

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  • exercise_guru
    exercise_guru Member Posts: 716
    edited August 2018

    I don't have a lot of suggestions but I have read that inflammatory ibprophen type medications after surgery can help to improve outcomes in cancer patients. I was not allowed to have that but I wonder if you do a search if that information might be worth taking to your doctor.

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  • I_Spy
    I_Spy Member Posts: 507
    edited August 2018

    Hi Foobmama how are things going? I'm still dealing with the tiny bumps along my MX scar. I saw an oncologist who was really nice and is sending me to a dermatologist for a punch biopsy. I see the dermatologist on August 27th.

    Question for you: how did you suspect you had a recurrence? Did you feel something or see something? Or it was just found incidentally on imaging?

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  • Foobmama
    Foobmama Member Posts: 12
    edited August 2018

    Thanks for the clarification on your site name. That makes sense now! Please keep us posted after you get the biopsies. I suspected a reoccurrence because I felt a lump that went pretty deep into my chest wall very near the scar, actually beginning at the scar and moving pretty deep inword. I was right. It was growing into the skeletal muscle. With my first cancer I didn’t feel anything, it was more spread out and it showed up on a mammogram. I never had any reddening along the scar or spots. It was a very noticeable lmp. I thought it was scar tissue at first but that didn’t make sense since it had been 14 years and I never noticed it before. I am doing very well now that the expander was removed from that side. I will have round six of chemo on September 6 and just experienced a lot of increased bone pain with the Neulasta shot. Ended up in the ER a couple of days ago because it was so intense. Got that under control now. I will get a three week break in between the next round and when radiation begins. That means I get to go on my work retreat which I really enjoy each year. It’s an all day retreat so trying to work radiation in just wasn’t going to work otherwise! Thanks for checking in and don’t forget to let us know how those biopsies go.

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  • I_Spy
    I_Spy Member Posts: 507
    edited August 2018

    Hi Foobmama, thank you for explaining all of that! It helps me, and it will help others who are wondering about recurrence. I'm glad you got your pain under control: honest to Pete, there is NO REASON someone in cancer treatment should have pain. And I'm so glad you get to go on your retreat!

    I will let you know on the biopsy: I may have to convince the dermatologist to do it, but the "hive" thing is still on my scar, so she will probably do it even if it isn't her first inclination. I'm tired of looking at it and wondering, so cut into me, take it out, and look at it please. I'll deal with the risk of infection and the stitches. I don't have a lump which is good news. I just need to know what is going on in the skin. With our histories we can't leave things forever without investigating, right?

    Let us know how your retreat goes!

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  • Ericamary
    Ericamary Member Posts: 44
    edited September 2018

    Hi, have been reading your posts. Wondering if you had some insight. I'm very confused. I had a double mastectomy with double diep flap. 10 years ago. The nipples are gone. began having bad internal itching suddenly on the breast that was cancer free. I've on on and off rashes around the faux nipple, plus now I have pain above the scar of the nipple. I've been to oncologist, dermatologist, surgeon. All say it's nothing. I'm going back to the surgeon next week. I'm insisting on a MRI. Thought, advice? All are saying cancer is impossible. I don't believe them.

    The surgeon says pain can show up anytime. This surgeon doesn't do punch Biopsys. Onl the dermatologist does but he didn't think it was necessary. He did a red spot higher on the breast, just a scraping it's benign.

    I feel like there's milk in my breast which is impossible. I'm very scared



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  • Foobmama
    Foobmama Member Posts: 12
    edited September 2018

    Don't want to scare you, but my cancer started growing in a tiny bit of milk duct tissue that somehow remained after double mastectomy and reconstruction, right under my scar on the right side. It grew into a sizable tumor. I don't recall having any itching or rash and it wasn't near the nipple. It was to my left of the nipple and the only way I knew it was there was because I actually felt it and at first thought it was scar tissue and ignored it for several weeks. I'm with you on insisting on an MRI. Either that or go to another breast surgeon. I think if it were my breast surgeon she would have you getting scanned. Please let me know what gets decided. I'm sending prayers and warm hugs to you from the Hoosier state. Try not to worry though. If it has come back to that area chances are it's extremely treatable. Mine thankfully was. So glad it didn't return to a bone. Or my lungs. It invaded skeletal muscle so if I had not noticed it or it was too deep to notice it might've ended up in my lungs. Feel very blessed. Having round six of chemo this coming Thursday and then start radiation in 3 to 4 weeks. Mine came back after 14 years. Who'd a thought! Sending love my dear sister in arms.

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

    Ericamary, MRI does sound like a good way to assess it. Your instinct tells you that something is up. Follow your gut to get answers. Hoping it is benign

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