January 2018 Surgery group! Please see updated list in thread!
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The PS was only able to put in TE's, not the implants at the BMX. But I have had the shooting pains, or twinges, for the last several days (I had surgery 2 weeks ago today). I assumed its just the incision healing, or maybe phantom pains?
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Maggie2,
I am 4 weeks out post surgery and I have TEs too, but I feel like I am feeling the twinges more now. It's probably normal, but I swear I have PTSD from this whole experience and now I question everything. I will see my PS Thursday so I will confirm with her.
Hope your healing is going well from the BMX.
Rebekah
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I saw a PS today (mine is on vacation) and the area of each side where the incision meet have large sores on them, he gave me antibiotic ointment and bandages and said it should be healed in a couple weeks. He said that although a portion had opened up a bit that the way they do surgery they put another layer of skin under so he is not as worried about iinfection.
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rdeesides, if you had surgery in January, your implant reconstruction is still settling, and you're still healing. But I'd definitely call the surgeon's office to ask about your pain.
I have a silicone implant too, and I'm told it takes like three months to drop to its correct position. I still have some pain from the drain sites, and am uncomfortable because I'm still supposed to wear the clasp-front surgical bra and band, a cursed thing. I won't see the plastic surgeon again till the end of the month. Meanwhile, I'm starting radiation Friday, and really hope it doesn't -- among other things -- ruin the implant.
As an aside, I like going to the PS -- there's no "cancer" talk there, just "how do you want to look?" Made me wish I were there for a nice elective cosmetic procedure.
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Had my first fill today and it didn't hurt, it just feels strange and heavier. I may have to get some removed before I start radiation which is kind of a bummer but it will be worth it to be cancer free. Hope everyone is doing as well as they can be today.
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Good evening, ladies - as your nerves start to regenerate, it's not that unusual to feel twinges or burning. Talk with your BS or PS. Last week, I felt a phantom right nipple for a few seconds. Not painful, but a very weird sensation. I loved the comment about going to the PS and not talking about cancer, but instead talking about how you want to look. isn't that the truth!
For those of you who have TEs and are getting fills: has your PS talked about how long you will wait for exchange after final fill? My BS mentioned that my PS can do it as early as a month later (I'm not going big. Just a decent B size). I have a summer vacation planned and I want to make sure I can swim in the ocean 🚤
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rdeesides- I had a BMX without recon and I started having shooting pains in my right breast today. I called my surgeon's office and they said it was perfectly normal. I have been relatively pain-free since my surgery so these few sharp pains in my breast took me by surprise.
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Thank you for your reassurance everyone! I will never be able to get sick or have an ache or pain again without questioning. I will talk to my PS on Thursday.
Rebekah
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Philaflash...My PS waits 2 months after the last fill. With my left MX, The TE had a 400cc capacity. We stopped at 385cc. It seemed big to me so I asked for smaller..also kept saying I wanted a B cup. Cup size doesn't exactly correlate with implant size. I ended up with a 340cc round implant. Some of my old B bras fit, but C cup seem to fit better.
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My PS said I’m probably having muscle spasms when I feel shooting pains like that. He said my exchange surgery will be either 8 weeks after my final fill or 6 weeks after chemo (which is unfortunately what’s happening). Both my oncologist and GYN oncologist seemed surprised that it would be that soon though so I don’t know if that is too soon
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I will have to wait at least 8 months for my TE to be changed out, about a year if I need chemo. I was told I have to wait at least 6 months after radiation. I am anxious for the finished product but I also do not want a bad result because i rushed things. Hoping I can get it done this year since I have already reached my max out of pocket with my insurance for the second year in a row.
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Hi Jude- my surgeon pushed very hard for me to have reconstructive surgery. I refused adamantly. I made it very clear to him that I didn't have any interest in Recon and I wanted my chest as flat as possible. Tonight was the first time I looked closely at my chest. It's very weird looking. The nonaffected left side has an incision from the armpit to the nipple. Strangely I look like I have a small boob. On the right side my incision is from the nipple to the armpit but then I have several other incisions in that area. My right breast looks like it's caving into my chest. I have these deposits under each armpit that's very annoying. I believe that's what you gals called the dog ears. The steri-strips are still on so I have to wait until they fall off to get a better idea. I see my surgeon in 3 to 4 weeks and I am going to let him know how disappointed I am in his total disregard for my preferences. I start chemo on Friday so I'm conserving my energy. I need to go on the flat and fabulous website.
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I saw the bill from the hospital today
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Jo6359 - Your post info says you're scheduled to start chemo today. I hope all went smoothly and as well as possible for you. Six rounds. You can do this! Been there, done that. Sharon
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- Sharon-I start TCHP tomorrow at 8:30 am, not today. My anxiety has been in check(mostly). At times today I've been thinking about what happens if the chemo doesn't work? What are my other options? One of the ladies provided a detailed list. of treatnent options for Her2+. Did you eat the morning of chemo? What was your most common side effect? Im packing my chemo bag now.
- In 18 weeks I want to say "Been there. Done that" . Will your boobs be ready for the summer?
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Sharin- I have another question for you. I was diagnosed with osteoporosis approximately 5 months ago. This cancer thing sort of got in the way so I didn't start on any medicine . Is this something I need to address with my MO or my PCP? Based on what I've read several women have experienced severe bone pain and an increase in osteoporosis with chemo. I don't want a condition that is already bad to worsen.
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Jo, I think I would address it with both but definitely bring it up to your MO. I haven’t started my chemo yet but my MO mentioned bone pain and said that will be something she’ll be watching throughout chemo.
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lovecanada-Thanks. I will discuss the bone issue with my MO and PCP. Did your Mo say anything to you about taking Claritin the day of chemo and the day after to alleviate bone pain?
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Jo - I took Claritin two days before chemo and for five days after. The Claritin is because bone pain can be a bad SE of neulasta, enough to make some women stop taking it. I never had bone pain. I wrote about the major SE I felt a few posts ago. I was on decadron the day before, the day of, and the day after chemo. I felt really good on the steroid days, in fact the day after chemo was shopping and cleaning day. The second day after chemo, I stopped steroids and was ok, but the next day I always crashed with fatigue and had diarrhea. I didn't really feel better for a week, then by the second and third week I felt good and started the next round all over again.
With TCHP, your chemo day is about six hours long, because of the premedictions and time required between the perjeta and herceptin infusions. Surprisingly, between the IV benadryl and steroids, I could never sleep during chemo. I think they countered each other. I ate a decent breakfast (yogurt, eggs, toast) and brought lunch and snacks with me. You'll figure out what appeals to you as your taste buds change during chemo. Most important, drink at least 8-10 glasses of fluid a day. Don't get behind!
As far as the effectiveness of perjeta and herceptin against HER2+ lesions, these are not chemotherapy. They are targeted therapy. They are monoclonal antibodies that attach to the HER2 cells and basically kill them. H and P attach to different areas on the cell. And you stay on it for a year. It was first used for women with metastatic disease, but found to also be very effective for early stage breast cancer. The next 18 weeks will not be a walk in the park, believe me, but among the surgery, chemo, targeted therapy (and sometimes radiation), you've got some pretty powerful therapies working for you. Focus on the next 18 weeks, get some good books, and know we're here for you and everyone else starting the next stage of our journeys.
I get my dexascan next week, so I won't know how much osteoporosis I have, but I do have significant osteoarthritis. During chemo, my symptoms actua!ly improved, which my oncologist said is not unusual. Go figure. I'm now on arimidex for my non-HER2+ lesion, which will worsen any osteoporosis I have.
I'm hoping to be done with TE fills some time in March, so yes, I hope to have my new foobs by summer. Best to you tomorrow. Let me know how it went. Sharon
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Sharib-Thanks. I appreciate the details you shared.
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I’m glad Sharon had more info that I can provide! My MO hasn’t said anything about Claritin yet but I have my pre-chemo appt Monday with the PA to go over everything so I’m going to ask if she doesn’t
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Tip re: Claritin. The generic is Loratadine and it is much cheaper. :-)
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rdeesides-Im buying the generic form now. Claritin is expensive. I definitely need to save money now. My hospital bills are coming in and I have a 40% copay. Ridiculous. Have a great day.
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Hi Jo, just wanted to let you know I was thinking about you today and hope you are doing ok. Jude
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Hey Jude- chemo was quite a process. Phila flash went into great detail last night so I was prepared today. I was there from 8 a.m. to 5:15. It was a very nice setup with great staff. I didn't experience any pain or discomfort. When I had to go to the bathroom I just went wih my IV pole. They did put IV Benadryl and steroids as my pre-meds prior to the chemo. The nurse did tell me hyperactivity would probably kick in later on tonight as well as tomorrow . I slept almost all day. The Benadryl knocked me out cold . I feel good. So we'll see what's going to happen in the next few days. The nurse wants my temperature taken and call the doctor if it rises to 100.5. My facility has an alternative therapist who provides essential oils as needed, yoga, meditation and etc. This service is free. The lavender oil helped to put me in lala land. The oncology social worker met with me for half hour. She went over support groups at the facility . She provided me with a list of organizations that if I need help with house cleaning, grocery shopping and rides to my chemo appointments or doctors appointments it would be provided free or at a deep discount. Fortunately I don't require those Services now but it's good information to have in to pass on. Thanks. How are you feeling? Do you have good arm movement? What is your next step in recovery? We all owe you a depth of gratitude for forming the January surgery group and keeping up with all the updates.
Love Canada and dreesides- I did take a generic Claritin this morning and I'm going to continue for the next few days. Now, I'm ready to go back to sleep.
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jo6359, I wish you minimal SEs!
Rebekah
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I got my oncotype today? It was 17 so no chemo. I will still need either radiation or more lymph nodes removed as the only one that was removed during my mastecomy did have cancer cells. I was just going with the radiation due to the risk of lymphedema. My MO said that Boston has a surgeon that does this surgery that reconstructs the drainage system and lowers the risk of lymphedema. I was told if they found multiple nodes came up with cancer I would need the radiation and chemo. So now I am getting paranoid wondering if I choose just the radiation and there's multiple lymph nodes with cancer and we will have no idea. I just want the best chance possible of this not coming back. I hate that they say, with what they know now (without checking more lymphnodes) I have a 12% chance of it coming can in 5 years...what about 10 years or 15 even 20...why do they base everything on 5 years? Of course then I also know if more lymph nodes have cancer that 12% could be higher. I guess this is all messing with my head.
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dipaquette- there is a good article on the community site. "Most Women with Early Stage Disease dont have more than a few Lymph Nodes Removed." . You have much more information on your breast cancer history so I dont know how it would apply to you. I was initially scheduled for chemo post BMX. I had 1/3 positive lymph nodes positive. My surgeon didn't like the look of my axillary nodes and an additional 15 axillary nodes were removed. All the axillary nodes were negative. Based on most reports there are those who would say my surgeon should not have removed so many axillary nodes. I trust my surgeon and he didn't like the look and feel of the nodes. It does increase my risk for lymphadema. With one positive node and a 2.5 cm in my pectoralis muscle Rads was added. I will receive chemo and rads. Rads will further increase my risk for lymphadema. Sorry I'm rambling. I think it was the steroids I had today with my chemo. The bottom line is if nodes are removed yes it does increase the risk for Lymphedema but it doesn't mean we are going to end up with lymphedema. With this cancer Journey we all have to be vigilant about every aspect of our care. Best of luck to you.
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dipaquette - During my lumpectomy (tumor < 2 mm) surgery in August, my Sentinel node was removed and sent to pathology while I was still on the OR table. To my Breast Surgeon’s (BS) surprise, it was positive. So she removed an additional 3 nodes. A week later pathology came back and 2 of those 3 were positive so a total of 3 positve including sentinel. My BS said she was again surprised because ‘the nodes didn’t appear diseased”, even though pathology said macro invasion. It was now necessary or “indicated protocol” because of the 3 positive nodes, to have ALND surgery to see if there was more involvement. 1 month later I had ALND and 4 more nodes were removed. thankfully they were all negative. My Oncotypedx is 14. My MO said that even though 14 is low and my cancer would “not likely respond to chemo”, I would absolutely need chemo simply because of my node involvement. That’s the scary part, if my tumor had a low Oncotypedx of 14 then why did it spread to my nodes? MO just shrugs when I ask him this. Last week I finished 6 rounds of Taxotere & Cytoxan. Usually it’s 4 rounds but again because of my 3 nodes 6 is more aggressive. In 2 weeks I will be having a Profilactic BMX cause I worry about reoccurrence or a new cancer in my healthy breast. I will also be having radiation after BMX. Then Ai for a at keast 5 years. At this point, after having my lymphatic chain messed with twice, I am at risk for lymphedema but have had no signs of it. I’ve been fitted fior a compression sleeeve to wear to fly or workout. I do however have numbness and some pain and sensitivity in my underarm, armpit and back since the first surgery. That was 6 months ago and it’s depressing that it may be permanent at this point. After all this I still wonder if there are more positive nodes out there.
I hope this helps you with further discussions you have with your medical team. None of these decisions are easy and none seem to be the perfect or obvious answer. It’s messing with my head too. Good luck and keep us posted.
Jo - thanks for posting that article. I will check it out too
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Jo - How are you feeling a few days out of your first chemo? I hope you're resting, drinking a lot of fluids, and not much else. I was just thinking of you and others here who now begin chemo.
I also took generic Claritin, not brand name. I just waited for those CVS sales and stocked up.
The last of my steristrips finally fell off after almost four weeks and I've discovered I'm getting stretch marks after only my second fill! I've started using cocoa butter like I did when I was nursing years ago. Anyone else getting them?
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