TRIPLE POSITIVE GROUP
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SpecialK thanks for that good information. I see you are from Tampa. I’m in Sarasota and had surgery and saw MO at Moffitt. Great people. Just hope MO and pathologist get it right.
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keepmovin - we have a great group of BCO ladies here in Tampa that get together every few months, we would love to have you join us. We have a couple of ladies from the Sarasota/Bradenton area. If you need chemo/targeted therapy will you travel up to Tampa for that or find an oncologist locally
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Hey Cherry, looking to see how the subcutaneous Herceptin worked out? I’m an American in Europe and I’m considering it.
Thank you
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Ingerp- yes I will have that conversation with the MO as you suggested.
Elaine - a consistent finding is what I’m all about right now.
Thanks for the support. Sometimes I think I’m crazy from the stress and waiting so doubting my thinking process!
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Hi EllieMae411,
I am in Europe and finished my last subcut. Herceptin of one year in April. I consider myself very lucky to be in Europe and get that chance to skip the IV. Getting Herceptin this way was a breeze: going in, waiting a bit for my MO to sign papers and then the actual shot is 5 minutes long. It does not hurt too bad (and that is coming from someone who was terrified of needles), just stings a little for like the first 15 seconds. I chose my thighs, everyone said it is the less painful area. Trick: do not put pressure on it after the injection is done. It hurts/stings more if you press it down with a cotton ball.
All in all, subcut. Herceptin is AMAZING!
Hugs,
Andrea
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Hi ladies, I just saw my lab work from last week's Herceptin/Perjeta infusion and my lymph score in my blood work was 19. It has always been in the 30s. Chemo was finished on June 5th and Thursday is my last radiation treatment. Wondering why the lymph number would suddenly drop so low. Of course, I checked google which was very bad idea for this Monday morning. Has this happened to anyone else? Just hoping there is a simple reason and not one of the several ugly reasons that google says. I have left a message with my oncology nurse but I'm assuming I won't hear back from her until later today.
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Keepmovin - I can understand your confusion and concern with the differing results. I went for a second opinion and my new cancer center did their own set of tests to confirm HER2 triple positive diagnosis. Not being triple positive would be such a wonderful blessing for you.
I pray you get consistent information soon and find peace with next steps.0 -
tld I hope you have received good news about the change in your numbers. Anytime my numbers were off I relied on information from my MO or care manager because looking online for answers is so depressing. I had a terrible habit of looking online not only for my symptoms but also my kids and grandkids. Every single time I did that it was never what google said it was!
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My BMX is coming up on the 22nd and for some reason I'm having a lot of anxiety about the scars and reconstruction. For those of you that are years out from BMX, how do your scars look? Are they highly visible? How long did it take them to reach their final form?
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hapa - what type of BMX are you having and where will your incisions be placed? How do you normally scar?
tld - were you receiving Neulasta or similar during the active chemo phase of treatment? If so, and you are now off those drugs, your current CBC values, particularly those related to white cell production, may be more normalized (meaning currently low) without the artificial stimulation of building drugs. It takes at least as long for CBC values to normalize after chemo as it did for the infusions, so don't be stressed if they seem off for a period of time. Not to say you shouldn't check with your MO/staff, but this is pretty common.
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hapa,
I had my unilateral mastectomy with tissue expander placement and axillary lymph node dissection (six nodes removed) on April 27th. I had my parents helping me around the house and with the kids, and I took one month off work to recover. The recovery was easier than I expected. I started doing wall-crawling exercises to recover range of motion a few days later, and physical therapy in a couple of weeks, I also started going out for long walks and stretching outside, and the 4th week I started doing some light jogging. Around May 28th, a month after the surgery the plastic surgeon told me that I could go to the swimming pool and that very day I jumped into the pool and I could swimming almost like before. By that time I felt physically strong and only got stronger ever since.
My surgery to remove the expander has been pushed for a few months because I needed radiation. The incision is visible but much faded, about 15 cm. I have normal range of motion -even after 28 sessions of radiotherapy. I do not miss that boob in the least and I have not felt even for a second that I lost anything. No "mourning", no anything. As long as I look more or less normal when clothed I cannot care less about that boob. I agonized with the decision lumpectomy vs mastectomy and I am glad I got the mastectomy and relieved I wont get mammograms ever again on that side.
Not sure if you are getting nodes removed, but if you do, I would recommend that you get an appointment pre surgery with a certified lymphedema therapist. I did that, they measured my arms and hands to have a baseline, and she explained to me what to look for, and also what the recovery of range of motion would be like. It was very reassuring.
Just my experience. I wish you best. You can do this. Get support so that you can take time to heal and rest.
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Re pain: I had painkillers only in the hospital. I came back home the day after the surgery, in the evening, and switched to Tylenol and I was fine. The plastic surgeon had told me that the worst pain was the first two days and that after that it would subside, and it was my experience. They also gave me opioid painkillers but I didnt need them. I am really no hero but didnt need them. After two days it was discomfort and I needed help around the house and to get dressed but no pain.
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SpecialK - thanks for responding! I did not receive Neulasta during active chemo. The oncology nurse called and said not to worry too much about the low lymph number because my other numbers were all good. But she did say that it was something that they would be keeping an eye on. Overall, her response did not help me worry less. No surprise there!
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Hi ladies,
I'm recovering good from my exchange surgery with fat grafting. Bruising is almost gone. Still have 2 more weeks off work.
Tld, hope your numbers bounce back good. I did not have neulasta with THP, but when I started AC I did.
Hapa, my scars are very faint already. My exchange was july 19th. My scars are about 3 inches maybe, and I can't see them when I look down at my chest.
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My BMX was June 2016 and tissue expanded exchange January 2017. My nipple reconstruction was October 2017. 3D tattooing was March 2018.
It takes a while for everything to get finished. I looked at it like this: I did not grow the real ones overnight and neither did these.
Today my scars are very faint.
Before anyone cut on me, I had my husband take a picture of my original breasts. I put a necklace on for a point of reference. I took the pictures to my Breast Surgeon and my Plastic Surgeon and had them draw on the picture EXACTLY where and how long they would cut.
My scars are the full width of each breast and they are somewhat under the fullest part. This way when I look down I do not see my scars. My Plastic Surgeon's wife is a stage 3 survivor. He is very sensitive as to how a woman wants to look. I am fortunate.
Don't look until your Surgeon's give you permission. Really. At first it can look bad and it gets so much better. It will just take some time so be kind to yourself.
Also, sleep upright and DO NOT lift until given permission to do so. It was probably six months before I was able to lift a heavy plate over my head. My Plastic Surgeon said the more active during the initial healing process, the worse the scaring can be. For the first month he allowed me to walk 20 minutes in a controlled environment and not to sweat.
From what I read, everyone's doctors seem to have a different approach. I did what mine said and it worked for me. I am not one to follow directions but I sure did this time! I figured my surgeons knew how they cut, sewed, placed stuff and so on. It made sense to carry out what they said.
Today, I swim, jog, exercise, walk ... just about anything I want. The only discomfort I feel is when I use a heavy vacuum cleaner. My DH does that now.
Hope this helps.
Vicky
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hapa - I had a unilateral mastectomy April 2017 with tissue expander, DIEP flap reconstruction May 2017, revision surgery Nov 2017 and nipple tattoo July 2018. I have a very faint, hardly noticeable scar around the nipple and the new breast looks EXACTLY like my right breast. I am blessed to have a very skilled PS. My revision surgery included a "lift" on the right breast to achieve symmetry so there is a faint scar around the right nipple as well. The scarring on my abdomen from the DIEP surgery is very faint, I have to look closely to even see the scar. My scars looks so good that my PS used my body for his key note speech in France this year at a breast reconstruction symposium. I am very happy with the reconstruction work I had done. My body looks better than it did before diagnosis ;-)
I followed doctor's orders for recovery exactly as prescribed. I think that really helped with my healing and avoiding infection. I was on pain pills for 1-2 days after the mastectomy and a total of 6 days after the DIEP surgery. I started my walking program about a month after surgery and was back at work after 8 weeks. My reconstructed breast does feel "heavy" at times (it seems to be better since I started lymphedema PT) and I still have tightness on my abdomen. I have no physical limitations - I walk 6 miles or more a day, jog, bicycle, swim, etc.
I had shoulder repair surgery this past January and that surgery plus recovery was far worse than all my breast related surgeries and treatments combined. My shoulder scar looks terrible compared to my reconstruction scars which really confirmed how talented my PS is.
I remember feeling anxious last summer that it seemed to be taking a long to heal. The most important thing to remember is patience - your body goes through so much trauma from treatment and surgery. Our bodies have a natural capacity to heal, it just takes time. Be gentle with yourself and make sure you have plenty of time to rest after surgery. Best wishes - sending (((hugs)))
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shelabela - happy to hear your recovery is going well and the bruises are almost gone. Enjoy your last 2 weeks off ;-)
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SpecialK - my incisions will be on the outsides of each breast, about 3in long according to my BS. It is up in the air at this time if I'll get to keep my nipples or not. If not, then of course the scars will be longer. As far as how I scar...I don't really know. I've had nothing worse than a migraine or chest cold up until my cancer diagnosis. No surgeries or major injuries or illnesses. I have a mild scar on my knee from scraping it as a child (at the time it didn't seem like a bad injury, not sure why it scarred), a mild acne scar on my chin, and I can honestly say that I don't know of any other scars on my body besides my port scar. The port scar is currently a thin light pink line that is not raised. I cannot feel it by running my fingers over it. It started out looking pretty gnarly but I massaged it with mederma cream (recommended by the surgeon who did my port placement - I am not convinced it did anything other than get me to massage the scar regularly) and it has gotten a lot better. I don't think it has reached its final form, which according to the surgeon should happen about the time my port gets removed.
LaughingGull - I'm hoping to only need tylenol. Opiates make me loopy and nauseous. I am definitely not functional when I take them, I feel like crap when they wear off, and I have no idea how people get addicted to them, they must have a very different experience than I do.
coachvicky - I will let my husband know he'll have to do the vacuuming from now on!
Everyone else, thanks for sharing your experiences. I feel better. I'm thinking about calling my BS and asking if a lumpectomy is even an option. I had multiple tumors and I'm thinking by the time they lumpectomize(?) all of them there would be nothing left anyway. If she says no then there's nothing else to worry about.
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hapa - if you are a candidate for skin and nip sparing you are likely to have IMF incisions, under the breast in the natural fold. This is what I had - with expander to implant, and I woke up looking like a slightly smaller version of how I looked when I went to sleep. I ended up having to remove the nips several years later - long boring story, in separate surgeries at separate times and I now have traditional incisions across the front of the breast also. I have not reconstructed nips or had them tattooed but you have to look close to see the scars, although the no nips look is a dead giveaway that I am no longer a "natural" girl, lol!. I scar really well, my incisions fade to very faint white lines fairly quickly - after 40 skin cancer surgeries and 17 breast cancer surgeries I am really glad about that! Even with the issues I have had I would not change my decision about BMX - it was the right choice, stemming from "busy" breasts for 20 years, and difficulty with imaging.
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SpecialK, my BS does not want to do the incision in the IMF because she said if she has to take the nipple, the skin between the nipple and IMF incisions may die off. Also, she can access my lymph nodes from the incision on the side of the breast but if she did an IMF incision she'd need a second one to get at my one marked lymph node, and that one needs to come out. I asked at our last appointment if she could do an IMF incision and she was adamantly against it. Are your implants above or below the pecs?
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hapa - my BS did my axillary sentinel node biopsy and port install, (subclavian) at the hollow of my throat, under my mastectomy flaps - IMF incision doesn’t preclude that option - but most surgeons are nervous about doing it. I was a lumpectomy candidate who opted for BMX so my surgeon was relatively certain the nipple would be fine. My tumor, while relatively large compared to the whole of the breast tissue, was at the furthest possible distance from the nipple - right where a bra underwire ends near the axilla. My surgery was almost 8 years ago so my implants are under the pec, pre-pectoral is a relatively recent resurgence of an older technique.
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Found out last night that HER2+ has been confirmed after lumpectomy. (MO wasn’t originally sure biopsy results were accurate). Taxol starts Aug 17. Will get treatments once a week for 12 weeks along with herceptin.. Pretty standard I think. Anybody have any idea how quickly the hair loss will begin? Trying to get my self ready for all that is coming.
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SpecialK and would you choose pre-pectoral reconstruction?
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keepmovin--I was on the same schedule and did an initial (1") buzz after #3. By #4 I'd taken it down to 1/8".
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jaboo - that is a complex question. A couple of the reasons people have recently moved to pre-pec reconstruction is that it eliminates the feeling of tightness and pectoral animation that happens with an implant behind the muscle which a lot of women complain about. It is also an easier recovery with an expander or implant (if direct to implant) because the skin stretches more easily than a muscle does. However, placing the implant on top of the muscle means several things - you now have an object against the chest wall and can't self check for recurrence as easily - a recurrence could be hidden under the implant and not found as quickly or at all, and you are also not laying the skin back down over the muscle where there is blood supply you are laying it down over allograft and the implant itself - the possibility of necrosis may be higher since the skin must now rely only on itself to stay alive. Allograft has to be used to help build a scaffold or sling to hold the implant up, some people are allergic to it or sensitive to the point where it causes a rosacea type reaction on the front of the breast all the time. Sub-pec reconstruction allows the skin to meet the muscle and form a new blood supply there, and a recurrence in the breast is usually very obvious because the implant is pushing the muscle forward and it is only covered by the thin layer of skin so a lump is usually visualized easily. I personally would have been a disastrous pre-pec patient. My skin is super thin and my surgery was very aggressive, I had extensive necrosis bi-laterally even with sub-pec and this caused a number of subsequent surgeries, my allograft material perforated after two years and had to be replaced - I'm a mess, lol!. There is no distinctly right choice between the two, it is more a matter of personal risk tolerance, discomfort threshold, if you need to resume work more quickly, if you are very athletic and don't want the possibility of pectoral distortion, and skin quality.
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SpecialK, thanks for your detailed answer. The self-checking for reccurence with pre-pec is one of my main concerns, so I'm glad you've addressed it. Thank you so much for your opinion. I have yet to search for experiences with the usual reconstruction behind the pec muscle - as to exercise, sports and physical work (I mean like gardening and forest work). I'm not an athlete, just like sport and physical labour makes me happy. chopping wood really is a good stress reliever... (my job is in a office)
Diep flap not for me, afraid to make any changes in belly muscles
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jaboo - I too was not willing to use other body parts to make new breasts, and I have not had issues with loss of strength - other than being deconditioned from surgery generally. The distortion doesn't bother me, but I am also not on the beach in a bikini, lol! I wear a regular tank or shirt and a pretty high neck on my bathing suit for the gym but that is due more to the number of surgeries I have had, not the distortion. I have had fat grafting done on the upper pole and that seems to cover the sharp drop-off I had initially - I had a bit of a coconut under my skin look initially because I have a fairly bony upper chest and I had larger implants, which have now been downsized. Fat grafting with a significant amount of fat softened that area and made it look very natural. I was not offered pre-pec because my BMX was so long ago, but I think all of these choices are a mixed bag - there is good and bad with each choice
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Thanks again, SpecialK. "coconut under skin" 🙂 that's what I imagine I might look too, since I'm very bony everywhere. I don't know if fat grafting is possible with my tiny body and BMI of 19. I guess I have to find a way to gain weight during chemo somehow, to offer some fat source...
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jaboo - my PS was not one to fat graft at the time of exchange to implants. He liked to let things settle a bit so that the final look of the implant was known, so there was no rush. This happened quite a while after chemo for me, I didn't have fat grafting done until I had the implants for a year. Also, keep in mind I had rather large implants, really too big for my frame - I am also somewhat petite, but with a slightly higher BMI than you have. The large implants were a mistake that was later corrected by a different plastic surgeon - a female, who wisely placed implants that were the exact match to my natural breasts in size, and she never saw those! You don't need large fat stores for a fat graft harvest, it isn't really that much fat and they can take from a number of areas - hips, thighs, abdomen. They usually only take what is required for the graft itself, and some plastic surgeons like to do grafting in stages over more than one surgery.
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Found out last night that HER2+ has been confirmed after lumpectomy. (MO wasn’t originally sure biopsy results were accurate). Taxol starts Aug 17. Will get treatments once a week for 12 weeks along with herceptin.. Pretty standard I think. Anybody have any idea how quickly the hair loss will begin? Trying to get my self ready for all that is coming.
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