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From Lumpectomy Reduction to Mastectomy

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Oh cancer is twisty.

I had my lumpectomy with reduction last week. It went perfectly and could not be happier. I’m recovering nicely at home. My plastic surgeon gave me lovely perky boobs that I’m just getting used to

Then the surgeon called today with all the pathology reports and now I have to go back for a left mastectomy.

When all the reduction tissue went to pathology they found a ton of DCIS all through the tissue. So, thank god I had the reduction as the lumpectomy margins were perfect.

No idea what kind of mastectomy I’ll have. I need another plastics consult I guess. Ocotype is off to the lab but I have a two week wait on that.

On the one hand I’m ecstatic we can cut it all out. On the other hand I’m like what the f*ck.

nothing in my nodes. Grade changed from 1 to 2. I think I’m still stage 1A, but haven’t seen the most recent write up from the tumor board.

I‘m just venting Scared and shocked.

Comments

  • needs.a.nap
    needs.a.nap Member Posts: 188
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    Hello @skyefall. That stinks! I’m so sorry for your unexpected results!! Especially after a nice job by your plastic surgeon. You have every right to be shocked and scared. It must feel like you are starting all over.

    That’s sort of been my fear … I just had a right side mastectomy a few weeks ago with tissue expander put in for future implant and eventually down the road I’ll get my left side reduced (I’m a busty 38H and am secretly pleased to get to be much smaller, just not through this route). It’s a commitment of time, the reconstruction process but I cannot imagine being that lopsided if I chose to not have reconstruction. But I can’t help worry that something unexpected will happen on the left side if it’s not already “brewing” and it will probably wait until just after I finally get my reduction that I’ll find out.

    I’m really glad for you that it is being found out sooner rather than later, but still. I’m assuming they did imaging on your right side prior and nothing must have shown up?

    I’ve had extra mammogram and ultrasound monitoring on my left side since last fall because of a cyst and lumpy patch but with dense tissue I know it’s not as easy to see stuff. Nothing even showed in my right side mammogram 6 months prior to feeling the lump and I’m sure it was already there, no doubt smaller. It was IDC, 1.5cm and there was a separate area of DCIS in the opposite corner of my right breast, thus the only option presented to me was a mastectomy. Mine is also ER/PR+, Her2-, grade 2, nodes negative, Oncotype 16 (I just found that out).

    No option feels good under these circumstances!! I’m sorry for the extra decisions you now are facing.

  • skyefall
    skyefall Member Posts: 18
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    @needs.a.nap thanks for sharing your story.

    The only thing that ever showed on my mammo was the 1.9 cm mass and that was very difficult for the radiologist to find. None of these DCIS spots - not even the 8MM one ever showed on my mammo.

    So, I don’t even know what the solution will be for investigating my right going forward.

    It really creeps me out that if I hadn’t had the reduction I wouldn’t know about the DCIS. So, clearly I have someone on my shoulder helping me out. I’ll take it.

    I got in to see my PS on Monday which makes me feel a lot better.

    Im so happy for your oncotype score. That’s great! I’m hoping mine will be low too.

    The reconstruction hasn’t been bad at all. I’m about 10 days out and my right side is perfect. No pain no twinges. The left is being strange and a little sore. But that’s the lumpectomy side so a little more trauma and it’s running behind.

    I love my new size. Love it. Hopefully it will be an easy match for the surgeon.

    Did you do an over or under the muscle expander and implant placement? Just curious.

  • needs.a.nap
    needs.a.nap Member Posts: 188
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    @skyefall Wow! Yours was well hidden and I can see why it was such a surprise for you. Thank goodness you had the reduction at the same time and it’s been discovered! I mistakenly thought that the DCIS was found in your right breast, not the left breast where you already had the tumor removed. I’m sorry I misunderstood but, ugh. That’s disappointing on every level! After all this work already. How was that missed?!

    I’m impressed with how quickly you are healing from your reduction surgery. That’s very encouraging!!

    My tissue expander is over the muscle, that’s what my PS likes to do. I think it might depend on the thickness of the remaining skin if they can successfully do it on top of the muscle. That might be a scenario to ask about.

    The time frame my PS gave me was after the mastectomy it may be a couple of months of filling the tissue expander, then more time for it to rest and heal at the fully expanded size before exchanging the TE for the silicone implant (that exchange will probably not be before 6 months) and then I’ll possibly need some fat grafting to smooth things out. Once we are happy with the results, I’ll get the reduction on my other side. Mentally I’m figuring on a year total but perhaps I’ll be pleasantly surprised and it’ll all be done in 6-7 months. We shall see. I have a feeling your surgeon will be able to match your other side nicely. It’s amazing what they can do!

    P.S. You may want to ask for very specific post-op instructions for whichever reconstruction you are considering. I failed to ask and was a bit surprised after the fact to be told 6 weeks of not using that arm. As in, really don’t use that arm or engage the chest muscle, T-Rex arm use only. I’m at 4 weeks and asked again yesterday but was reminded I have 2 more weeks to go. It sounds like each PS has their own specific recommendations and Googling it gives such an inaccurate idea of the healing process!

  • skyefall
    skyefall Member Posts: 18
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    @needs.a.nap thanks for the info.

    yeah. Even my reduction is 6 weeks trex - my PS almost passed out when I mentioned I have horses at my house….

    I’m compliant when I’m awake, but recently I’m waking up with my arms thrown up over my head and all kinds of randomness going in the middle of the night. I decided it’s not my fault if my body is stretching itself and I don’t know about it… probably won’t tell the PS that one! Lol.

    thank for all the info. It helps. I’m pulling my questions together this weekend.

    today is my birthday and I’m heading out to try and find a supportive bra to wear for four hours at dinner so I can feel like a normal human and maybe wash the one sports bra that fits.

    have a great rest of your weekend!!! ♥️

  • moderators
    moderators Posts: 8,219
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    Happy birthday, @skyefall!! 🎂

  • qtip_ter
    qtip_ter Member Posts: 1
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    I feel like am having to do everything by myself. The oncologist office tells me we don't do anything until after surgery and had to pull teeth to get an appointment with a surgeon. Finally have an appointment with surgeon this Thursday. BWill the surgeon answer my questions?

  • needs.a.nap
    needs.a.nap Member Posts: 188
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    Hi and welcome @qtip_ter. I’m really sorry you find yourself here, facing a difficult diagnosis. It can be super stressful at first trying to set up all your appointments. I remember it was agonizing waiting those first few days and weeks!!

    It’s probably different at each hospital or cancer center how things are done. I got my biopsy results on a Thursday at the end of the day, had my doctor refer me to the breast care center at our state university hospital, I called them Friday morning and was told that my case needed to be reviewed first by a team, then they would call me back within a week to schedule an appointment with the surgeon. I couldn’t wait that long so I called first thing Monday morning and thankfully they had already reviewed my case and got back to me that same day to schedule the appointment for the following week. It was hard to accept that I would have to wait my turn, that I wasn’t the most urgent case they had. Looking back now, I definitely wasn’t a high priority case! But they really do try to get new cancer patients scheduled as soon as possible.

    The breast surgeon should be able to answer many of your questions and suggest what type of surgery you need - a lumpectomy or mastectomy.

    I met my oncologist on the same day I met with my breast surgeon but that was more of an initial consultation, to meet her and discuss what may be needed. Mine was early stage cancer and didn’t need anything before surgery, so she scheduled me for 5 weeks after my mastectomy that way she would have all the pathology and other test results ready to discuss a treatment plan.

    Hang in there! This is not an easy or fast process but eventually we get all the information we need to make our decisions and move ahead with treatment.

  • needs.a.nap
    needs.a.nap Member Posts: 188
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    Hi @skyefall. I’m sorry we’re both in this crazy boat! Cancer, mastectomies, figuring out reconstruction, new bra shopping, etc. I told a friend today that no one going through any form of cancer is having a good time. At least I doubt it.

    I also was waking up with my arm stretched above my head at first. Someone suggested it might be I need a different pillow to help keep my airway properly open and we subconsciously position ourselves to open our airway, thus arms above the head. I don’t know if that’s the case. I’ve been sleeping in a recliner with pillows all around me and now my bathrobe stuffed as a neck pillow. I sleep ok.

    It’s sort of to ward off my cats. They are scared of the strange looking pillow arrangement! I can just see an incident happening and my PS will be sad and disappointed I’ve messed up all his work with a heavy cat landing or launching off my chest. I’m not sure how it will be for you with horses! Obviously they don’t step all over you, but surely they nudge you for love and attention? Maybe not your chest.

    I decided I might need a Kevlar bra to protect my numb breast and implant that can get punctured!

    I need to ask my plastic surgeon about recovery from the reduction surgery. If it’s another 6 week restriction, I want to know. At least it won’t be my dominant side but still. I’m so bad about asking the correct questions! P.S. I sent you a private message with a link, not sure if you got it

  • skyefall
    skyefall Member Posts: 18
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    @needs.a.nap - my lumpectomy and bilateral reduction is a six week recovery with trex arms. The PS is adamant about it.

    I can move, but I know that lifting anything heavy at two weeks is a really bad idea.

    I’m not looking forward to a second six week stint. I have physical therapy scheduled in two weeks and I can hardly wait to go.

    Dinner out for my birthday last night took a lot out of me. I’m going to be back on the couch this week.

    for sleeping, I had a huge wedge and knee roll in the bed. I bought bolsters and kept my arms on them. I didn’t want a recliner to be away from my husband. Or my pittbull who sleeps next to me too.

    The wedge set up keeps me super upright and although totally annoying was helpful.

    I just graduated to the sleep number back pillow with my own pillow and I’m so much more comfortable.

    Ive had three back surgeries so it’s a dance to mind my chest and make sure I’m keeping my hips and low back loose. I’m doing my old post back surgery exercises that do standing up and they are totally helping.

    I got the link. I have some homework today before my appointments tomorrow! That looked excellent. Thank you!

  • skyefall
    skyefall Member Posts: 18
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    Hi! I’m so sorry you are not feeling supported.

    Yes, a GOOD surgeon will absolutely answer your questions. If they don’t or you are not comfortable with communication, get a second opinion. You have to be able to have a relationship with them and get your needs met.

    So, I’m in California and with Kaiser. There is such a process with them. I call it the Kaiser conveyor belt. So far I’m happy, but it’s been a learning curve. I’ve gotten amazing doctors and department heads assigned to my case and love my surgeons.

    Before my own case, I thought one just got dumped into oncology and they managed everything. That hasn’t really been the case with my diagnosis.

    Based on my biopsy, I went straight to the surgeon. I also asked for plastics immediately before I committed to the breast surgeon. That was a literal lifesaver for me.

    After dealing with all this for six weeks and one surgery down, I finally meet the breast care coordinator tomorrow from oncology. Oncology can’t do much without the surgical pathology report in many cases. Others start with oncology for another type of BC. That’s where all the er/pr +/- and Her2 stuff comes in. It’s a lot to learn.

    If I don’t like my oncology person, I’m changing. I’ve told myself over and over again that I’m going to pick my team and they have to be people I’m comfortable with.

    One other thing about surgeons - I come from a physician family and I’m married to one - my advice is to let them do their spiel. Take notes. Take someone with you if you can. Once they tell you what they need to - then restate and start asking your questions.

    I write my questions out with checkboxes and bring them to my appointments. I have a notebook for all appointments. When they do their spiel, I restate. Then I ask for a minute to review my questions. I check off what they covered. Ask for clarification and dive in on my agenda. I make sure everything gets covered.

    I let them be the doctor and get their job done - then it’s all about me. I haven’t had anyone get irritated with me yet! I ask a ton of questions and do my research.

    no matter how you tackle this it’s a lot. Too much frankly on most days. It does get better with good physicians and easy communication.

    hang in there!!! I hope your Thursday appointment is really excellent.