Lumpectomy Lounge....let's talk!

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  • Molly50
    Molly50 Member Posts: 3,773
    edited April 2016

    Welcome Fitmom, sorry you are dealing with this at such a young age.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited April 2016

    I just got a shocking e-mail, and am still trying to process it: Carol, the kind, knowledgeable and generous oncology nurse who headed the LIFE cancer survivorship program for the NorthShore Health System and facilitated our breast cancer support group at NorthShore Evanston Hospital, passed away last week, after what was termed "a brief battle with cancer." I met her only three times--the first two support group meetings I attended in Feb. & March, and a lymphedema education lecture in Feb. I knew her only as petite and energetic, a walking advertisement for healthy living--I didn't recognize the photo of her in her obit, ostensibly taken before her initial diagnosis, when she had a more substantial physique. I had no idea she'd ever had cancer--and neither did the other newer members of our group. May her memory be for a blessing, as was her life.

  • tbalding
    tbalding Member Posts: 449
    edited April 2016

    Melancholy congratulations on onco score!

    Sue sorry for delay in getting to the dr.

    Molliefish great news!

    I went to my Zumba class again, trying to keep it low impact which is hard for me. But it felt good. They all had a sweet card for me , lots of positive energy. But very tired this week. Have to work today but will rest tonight, especially as I have to work some this weekend.

    Hope everyone has a good day!

  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    BrutersMom, Thanks. I do have fine, very straight hair but I also color it and I know that makes a difference.

    Sandy, how shocking! At least you are left with some wonderful memories of her. I can understand how stunning it was. My RO was diagnosed with myelofibrosis (a rare bone cancer) early this year and is getting a bone marrow transplant this month (though my BS hadn't heard if he'd had it). I had hoped to see him before I leave but that won't be possible. The same irony: those helping us cope with our cancers having cancer.

    HUGS!

  • Peachy2
    Peachy2 Member Posts: 350
    edited April 2016

    Welcome, FitMom3. I see that we have somewhat similar pathology. You are smart to do this much research before meeting the MO. I didn't find this forum until shortly before I started radiation, and having the education and understanding that's available here would have been helpful. Instead I went to the MO thinking "Maybe I won't really need chemo?"

    The MO walked me through the things that needed to be considered. Staging, which now that I had a lymph node involved became a 2. Grade, which at 2 was medium fast growing, so the cells could be effectively treated with chemo. And hormone receptor status. I did not realize at the time, but being ER+ and PR- indicates a more aggressive cancer. She then said "I recommend chemo. If you tell me that you want to do any and everything possible, we can go ahead and schedule it. If you have reservations, there is a test that I can order to evaluate how effective it will be." My response was "Just get it out of me." So, I didn't have an oncotype test, so don't know what my score would be. It was my decision, but my frame of mind was that this was not something I would get a do-over on. I did not want to have a recurrence in ten years when my son is graduating from high school and think that I should have had chemo when I had the chance.

    The ladies here have had a range of different experiences with chemo. Mine was that I expected it was going to be like having the flu for three months straight, and it really wasn't anywhere close to that bad. I always say it's a lot like pregnancy: everyone tells you all of the horrible things that will happen to you and only half of them do. Also like pregnancy, bizarre things happen to your body over which you have no control and you just deal with them because they're temporary.

    Please let us know any questions that you have. This is a great place for information and support.

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited April 2016

    ugh. Just noticed a bumpy bruised feeling spot 1/2 inch from lumpectomy (6 months ago) scar that seems to radiate to the ribs belo. Seeing my MO in 2 weeks so I'll tell/show her...but I'm feeling scared even thought it seems unlikely that it's cancer considering I just finished chemo.

    Anybody have similar spots near thier lumpectomies. It's never given me any trouble except a bit of fluid after surgery that reabsorbed on its own months ago.

  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited April 2016

    Loves to fly, hopefully it's nothing. Prayers for you!! I think we will always worry over every little thing. I know that most recurrences aren't in the same breast from what I read, they usually show up outside of the breast. That is what worries me most, how bad it would get before the cancer would be noticed OUTSIDE the breast. It's not like they scan your whole body every year, you just get a mammogram or breast mri. That's what scares me! I had positive margin and with second surgery, they found no cancer at all. I wonder how that happens?, and if they truly got it all. I guess I just have to live with the fear in the back of my mind

  • Italychick
    Italychick Member Posts: 2,343
    edited April 2016

    yes, I had that appear for about a week two months ago, so a year after surgery. It went away, I think it was Mondors cording. I had an MRI after it popped up so I know it wasn't cancer spread.

    Hang in there.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited April 2016

    Theresa is probably right, Jill: sounds like cording. The bruised feeling is real--in fact sometimes you will even see a bruise after a cord pops and otherwise disappears, but they might recur in the same place. Different theories as to what the cords are, but the prevailing wisdom is that they are proteins congealed in and blocking lymphatic channels. Cording usually appears in slender women and true LE in "women of substance." As a moderatelyzaftig gal, I got both. You might want to ask for an LE OT referral for gentle massage to break it up.

  • createdonpurpose
    createdonpurpose Member Posts: 27
    edited April 2016

    As I prepare to head into surgery on May 11, I have a few questions. Do you have to request something to get an oncotype or oncoscore? I see many of you referring to this -but none of my providers have mentioned it. Also, any tips or pointers? I'm having a lumpectomy to remove a 2.6cm mass along with a smaller mass directly behind it on my left breast. They will also do a sentinel node biopsy using a blue dye that assists in mapping. Y'all seem much more knowledgeable than me at all this stuff! I'm navigating this on my own and want to be prepared.

    On a bright note, my employer has been over the top supportive! In order to get hubby on the same page I had to minimize much of the process. In some ways I feel cheated (just venting) because I am trying to maneuver this alone. In other ways thankful, I didn't think Id ever get him to agree that surgery was ok.

    Today I'm shopping for new pj's or a zip up jogger to wear while recovering. What other things should I consider beforehand?

  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    CreatedOnPurpose, I would request an Oncotype test. Insurers often resist paying for it. Medicare seems more likely to approve. It's another tool to decide if chemo is necessary. Many women find a small pillow to put under their arm helpful. Ice is good. Tylenol is also good. If you are given a prescription for painkillers, fill it even if you don't think you'll need it. Handy to have if you do find it necessary. If you are offered a Valium and/or Dramamine at the time of surgery - take them! Valium is always good and the Dramamine worked like a charm - no anesthesia nausea. I'm sure other ladies will have good suggestions, too. But you seem to be on top of things.

    HUGS!

  • createdonpurpose
    createdonpurpose Member Posts: 27
    edited April 2016

    PontiacPeggy -thanks for the info. My surgeon recommended a "block" in then muscles behind the breast/armpit area as well to help stay ahead of the pain. Did you experience this?

  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    Created, No, I didn't have anything like that as far as I know. I had Lidocaine for the wire locators and dye injections so neither was particularly painful. I did take on pain pill in recovery but that was it. Tylenol the rest of the time. But each of us is different. Keep asking away!

    HUGS!

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited April 2016

    thanks everybody. My head tells me that it's really unlikely to be cancer considering I just finished chemo, but I can't help but worry. It's righ between the scar on my breast (10 o'clock) and the snub scar, so I am assuming it's from the scar or lymph node. I will research cording.

  • Grazy
    Grazy Member Posts: 373
    edited April 2016

    Jill, one worry follows another, doesn't it! I hope (and I'm sure) everything is fine for you as you have just finished chemo, as you said. Every bump, every twinge will probably haunt us all forever. Have you recovered fully now from the chemo? It must be a relief to have that part all over with.

    I've been off this site for a few days and haven't read back through all the posts yet this morning, so I can't comment on everyone's, but I hope everyone is doing well. I'm home for a day's break from my mom's. Six days "nursing" my elderly mom has definitely made me feel elderly and I need to keep myself rested before my rads start. She's NOT the most compliant patient and is giving everybody from me to the physicians a run for their money these days. #FrustrationLevelHigh :) She's being transferred to a beautiful transitional facility today until she recovers well enough to go home. Thankfully my brothers will be at the helm of the ship today while I'm back home with my lovely family for a break. She's only got me for another short while until my rads start!!

    I noticed CreatedOnPurpose posting just before Jill and I do remember you - I'm so glad to see you're finally having your surgery. Peggy recommended Dr. Susan Love's Breast Book when I joined this site, and I find it very helpful in answering any and all questions I have had, in addition to benefiting from the ladies' experiences on here.

  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited April 2016

    Created, my MO automatically ordered my oncotype testing after receiving my biopsy results from my surgery. It wont hurt to ask to be on the safe side. There isn't much of a way to minimalize much when it comes to breast cancer. You have to do what you have to do. You could possibly need chemo AND radiation. I sure wish you well and will keep you in my prayers. I was digging holes and planting tomatoes 3 days after my second surgery and no severe pain after the first 12 hours or so. Remind us before you go in and keep us updated on how you are doing! We will be in your pocket!

  • blamoms
    blamoms Member Posts: 113
    edited April 2016

    Jill

    I had a scare a while back when I felt a lump in my breast where he lumpectomy was done. It turned out to be a seronoma (spelling?) I felt a another lump in the other breast and it was a cyst my period showed up 2 days late. The doctor said its normal since we are messing with the body with chemo. Hang in there

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited April 2016

    thanks all.

    I'm 11 days PFC I'm not completely over the side effects yet, I still don't have my full energy back, and I'm still having some taste and mouth issues. I don't feel too bad though, the previous five cycles I always felt great by day 14, so I'm hoping that will happen again!

  • Katzpjays
    Katzpjays Member Posts: 237
    edited April 2016

    Created - My surgeon ordered the onco test after he got the final surgical pathology report. Peggy gave you some good tips. One other thing I found helpful is that I made sure I had prepared my favorite soup and had it ready to heat up when I got home. I wasn't terribly hungry when I got home, but I was tired. Once I ate, I felt close to my normal self and Iwas glad I had done the prep in advance. Maybe you're luckier, but in spite of his many admirable traits my DH can't cook worth a lick!

    Jill - sorry you have this scare. Hopefully your research on cording will ease your mind until you see your MO.

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited April 2016

    Ack! I've been off the board for almost a week while I was on a business trip and I'm so far behind I think I'm ahead! Please forgive me if I just take up right here.

    LTF, I am 4 months PFC and I still have symptoms, mainly chemo brain. It's maddening. I will be talking about something and suddenly I lose my train of thought. Or I lose the word I want to say and it takes me a moment to recover it. Sometimes the word is just gone and I try to describe what I wanted to say. Like, if I want to say "I went out on a boat", I might have to say, "You know that thing you ride in on the water that has a sail." Ugh. I used to be a whiz at Jeopardy, except for the advanced math stuff, but now? It feels like I had dementia, I swear.

    Okay, I guess I need to update here--

    Good news: My wounds are completely healed. Yay! Today I went to get a massage and she did myo-fasciael release on my right pec and ribs. I have been so tight under my arm, but she did some magic and I have NO PAIN or tightness now. I'll see her again in 2 weeks for a fresh up.

    Bad news: DH needs surgery for his prostate cancer. He's a Gleason 8, which is very aggressive cancer. We med with the surgeon and the RO yesterday. I was very surprised to hear the RO recommend surgery--most of the time doctors want to recommend their specialty. In DHs case, the RO believes that radiation would be high risk for many complications and would reduce his quality of life. So, surgery it is. I'm hoping we can put it off until after June 5--we have several things going on this month, including our meet-up with the Lumpectomy crew in NC and a camping trip Memorial Day weekend. I have a "daughter by another mother" getting married at the beach in early June and I don't want to miss it. If the surgeon feels strongly that he needs to do surgery before all that, we'll have to cancel everything else. They have to take the whole thing, plus a piece of the urethra and a bit of the bladder. The big SE of prostate surgery is incontinence, up to a year or more. There is no way DH will have any real semblance of continence before 3 months and I will not leave him at home for several weeks, at least. I suspect he will be very depressed after the surgery--who wants to be dribbling on themselves constantly? His best friend has stage 4 prostate cancer and is terminal, so DH feels like he's looking down the barrel of things to come. I think this cancer probably is small and contained, at least I hope it is. If so, DH has a very good chance of complete cure (or as much cure as you can have when you had cancer.)


  • Molly50
    Molly50 Member Posts: 3,773
    edited April 2016

    Created, my surgeon for my mx used a pain block. It was amazing and they didn't have to use opiods which has been in some studies implicated in helping spread cancer cells.

  • ORknitter
    ORknitter Member Posts: 119
    edited April 2016

    Poodles, I'm so sorry to hear of your husbands cancer. Prostate cancer can be such a "demasculinizing" experience for men. My husband had a similar surgery, with similar Gleason score, many years ago, recovery was faster than expected and other than the usual impotence he is great. Please feel free to private message me if you have any questions, with all you have going on I'm sure the unknowns of this is adding stress.

  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    Poodles, Great news for you! What a relief that you are healed and pain free - it's been going on too long. Breathing now?

    Well, maybe not. That's rough news for DH. He will not be happy being incontinent (and neither will you until he feels good enough to manage the Depends). It sounds like the outlook is quite positive otherwise. Of course he's terrified since he's watching his friend with being terminal. We've all been there and felt so very vulnerable. Pooh-poohing his terror doesn't help (which I'm sure you're not doing). Hopefully his surgeon or RO can convince him that he's not terminal. That might help. I hope you can wait until June, too. You both need the fun things you have planned to help move past the last year and gain some renewed inner strength to face his surgery. I'm with you!

    HUGS!

  • Moondust
    Moondust Member Posts: 510
    edited April 2016

    Poodles, hooray for good healing!!! And I'm so happy to hear that the massage gave you some pain relief. That's wonderful! One of our friends had prostate surgery and incontinence, but he dealt with it very well. He was out playing golf in no time. He let his buddies know of his problem and they were all very supportive and accomodating. Hopefully your DH will keep his spirits up and come to realize he has lots of good life left to live! I have chemo brain without even having had chemo.

    Created, I'm another one very happy to learn you will soon have surgery! I recommend a McDonalds ice cream cone on your drive home :) My Onco test was not ordered until I met with my MO after surgery, but I wish it had been ordered right away after surgery, so you can try requesting that. There was no problem with my insurance paying for it. I think it is considered a standard test now.

    LovingGrouches, I think we all have the same thoughts about how a distant recurrence would be noticed. I have enough aches and pains to complain about that they will probably order a scan if I complain loudly enough. That is my tentative plan :) A positive margin does not necessarily mean they left cancer cells, it just means they were "too close for comfort" to be sure. So it is certainly possible to find nothing on the second surgery.

    Jill and MLP, I am SO happy that you ladies are done with chemo!!

    Sandy, thanks for the advice to find out about meds and supplements that might be affecting my calcium status. I will ask at my next appointment. I don't take any meds except now the arimidex (which will not help), but I do take some supplements such as SAM-e and curcumin extract.

    Update on my upcoming second opinion for chemo: the first paperwork seems to have been lost, but my MO's office got right on it and faxed the paperwork to UCSF again. After my hike yesterday (no cell phone signal), I had a voicemail from UCSF saying to call them now that they had everything. I'll call first thing Monday. I guess all this nonsense cost me a week in getting the opinion, but it seems to be back on track now.

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited April 2016

    Orknitter, you hit the nail on the head. Most men have to deal with prostate enlargement as they get older, and that's bad enough. But when they have to have surgery to remove it, they get all kinds of bad SEs, primarily ED and incontinence. Most men would have difficulty with even one of those, let alone both.

    Peggy, I'm trying to be as understanding and supportive of DH as he has been with me. He has really been the best. I'm trying to do the research for him--DH really doesn't do well with all that. So far, every doctor has been giving him good hopes for complete cure, as long as this cancer is completely contained in the prostate.

  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited April 2016

    moon dust, good luck with second opinion!' Hope all goes well. Poodles, I will keep dh in my prayers! So glad you are well!!

  • TwinEagleMom
    TwinEagleMom Member Posts: 20
    edited April 2016

    Hello all-

    I haven't posted here before. I had my lumpectomy on April 19th and I am feeling great. I did neoadjuvent chemo - 4 dose dense A/C followed by 12 weekly taxol and carboplatin. I had a dose reduction of the taxol for the final three weeks because of neuropathy in my hands and feet. My last chemo was March 21st.

    I had good clinical response to the chemo and after only a couple A/C treatments Nobody could feel the tumor. At surgery, I had 1.5cm of residual tumor, 4 clear nodes and wide margins.

    I am getting ready to start 35 rads, but yesterday I got a call from my MO saying that the pathology report showed that the residual tumor is HER2 positive! What? Shock! My original biopsy showed HER2 negative! So now the MO wants to start on herceptin and perjeta (if he can get it approved). He says that this is a good thing for me since I have a non-chemo option that I did not have before.

    Has anyone else had a change in diagnosis after surgery? My concern is that the best results with herceptin and perjeta seem to be when it is given with chemo, but my chemo is over. Anyone else take herceptin by itself?

    Thanks!

  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    TwinEagleMom, Welcome! I can't answer your questions but wanted to let you know we're here for you and someone(s) will have answers to your questions. That's wonderful how well you responded to chemo!

    HUGS!

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited April 2016

    TwinEagleMom, my diagnosis changed after my lumpectomy. My tumor went from ER+ PR+ to PR-, a more aggressive cancer. Genetic testing revealed that I have 2 gene mutations which cause breast cancer and other cancers. So, my treatment went from lumpectomy and radiation, to chemo, bilateral mastectomy, and no radiation. I take Femara (AI). Thankfully, the tumor was HER-, so I didn't have to deal with that part.

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited April 2016

    Now, I'm off for to spend the weekend with my 21yo DS. He is severely mentally handicapped and autistic, very sweet and just a delight. We're going to go pick him up from his host home and take him to a nice hotel where he can swim in their indoor heated pool. DH will have to get in there with him, as I have not been cleared yet to get into a pool or hot tub. And when he gets done with that, we can take him for a long walk. Hotels are so much better for him than our home, because everything is flat and handicapped accessible. I know Christian will have a great ole time.

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