Lumpectomy Lounge....let's talk!
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My brain is wonky, ChiSandy, so I apologize if I already answered and forgot.
I find out this afternoon all the details--what's up, what they want to do, etc. I cannot agree with you more about choosing a specialist in breast surgery. Back in 2004, I chose a general surgeon. Now, to be fair, he did a good job--scar has faded, etc. But he had *no clue* about anything else. He didn't refer me to an oncologist or anything; luckily, my GYN is awesome and picked up the slack.
THIS time, the center I'm using takes a team approach--from radiology to surgery to oncology. I've had the best care thus far. It is a drive, but wow, has it been worth it.
mustlovepoodles (and I do adore standard poodles), I've had this conversation a lot over the years with my doctors. It seems that for me (and perhaps others), a "multi-modal" approach works best--using several medications in synergy. Many people find the Transderm-Scop (scopolamine) patch (anticholinergic), applied before surgery, works well, though it did not for me. Strong anti-histamines like Benadryl, Phenergan, and Dramamine can work, though you are groggy, which may not be a bad thing. I personally love love Zofran (odansetron), a 5HT3 antagonist. Why do I mention these different categories? It may be that 1 category works great for you--or that you benefit from combining two categories. (How do I know all this? A colleague who is a pharmacist--she explained it in great detail, and helped me understand why not everyone gets the same relief).
Bottom line: I think it's very important to ask questions, see what works for you, and write it down for future use. Once I did, it was easy to ask for the "best" combo for me personally.
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ChiSandy, thank you! Yes, I’m day 12 post #4 AC. Once I’m healed from surgery I’ll start Taxol and Herceptin. Probably by the first of March. 30 rads are already on the table - 5 days a week for 6 weeks. The clean up crew. 😊 My tumor has most definitely gotten smaller. Everyone has been impressed with the response.
The only thing I’m uncertain about now is the lymph nodes. Already tested positive for cancer. Could it be gone now? Or, will at least the sentinel node still come out for testing? I guess it just depends on what the dye does. I’ll be sure to ask my surgeon in the a.m.
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Shenandoah, I’m with you on the CBD oil! I was never a recreational user, but marijuana was legalized in CA Jan. 1. I had read lots of good things about CBD. The day of AC #3 I headed to a dispensary and purchased CBD and a 1:1 CBD:TCH oils. The CBD has been helpful for energy, headaches and nausea. I take it twice a day. The 1:1 I take in the evening (or if I’m home during the day). It has been a lifesaver. It helps me relax and sleep as well as eases pain and general ickieness. I don’t understand the stigma around it. While I don’t technically need a medical recommendation card, I got one because it gives me a discount at the dispensary.
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I'm thoroughly frustrated with bra shopping. I never liked it when I actually HAD breasts. Having no breasts has not made it easier. I had a fitting about 3 weeks ago. The new forms, two camis and two bras came today. The forms and camis are great, but the bras are awful. I called the company and told them to just ship me two leisure bras like the ones I already have. So disappointed. The soft cotton leisure bras are very comfortable, but plain (mint green and blue). I was so hoping for something pretty.
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Why take CBD in any way, shape or form unless you're having nausea or pain? My MO recommends against it because it can stimulate growth of ER+ cells, and will sign a med-mar card application only for her Stage IV patients or those on chemo who have no appetite. According to the NYTimes, retail-strength (i.e., non-prescription) CBD is no better than placebo.
I'd rather put up with letrozole's side effects than run the risk of accelerating the recurrence timetable. I don't believe in megadoses of vites & minerals (absent a documented deficiency), because you'll just pee away more than the RDA. There are no controlled studies proving a "cocktail" of various herbs & vites stimulates the immune system. (And what's it "attacking")? Some medicinal herbs can occupy the same pathways as some meds, cancelling their effectiveness. Some can be toxic. And they are completely unregulated. Your recovery from autoimmune diseases is probably largely due to not consuming foods that cause inflammation.
However, if I had to give up red meat, dairy, and all starch & sugar and just live on fruits, vegetables & nuts? Just shoot me now. Food in moderation (especially fine dining) is one of my life's true pleasures. Bad enough I had to cut my wine intake down to 3 small glasses a week.
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Soooo, I don't normally wear one, but looks like I'll need one. So, I'm interested in hearing more about soft, seamless bras....
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I use both CDB and THC on an as needed basis. Mainly for nausea, pain and restlessness. I take so little that it hasn't helped my appetite, unfortunately, as I've lost 18 lbs. so far. I'm ER/PR- and feel pretty good about it. I’d be wary of online CBD oil. You never know what you’re getting. I have the utmost in trust for my local, well respected dispensary. Definitely not advocating that EVERYONE do it, though. Such a personal decision. 😊. I know it's helped me.
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The soft knit "leisure" bras I got did have a single dart shaping each cup, and front hook closure (7 hooks, so it could be a challenge for arthritic fingers). They're made by Leading Lady and available from HerRoom.com, BareNecessities.com, and Fullbeauty.com (which handles Roaman's and Woman Within). They're $25 and come in a rainbow of colors. Sizes are 32-52, A/B, C/D/E, and F/G/H. If you're small-to-average-busted, Coobie, Genie or Fruit-of-the-Loom make seamless knit pull-over or step-into knit bras. Though I walked into the hospital a 38 I, they sent me home crammed into a size XL Royce surgical bra: white knit, high "posture" back, front Velcro closure. I suppose you can get that one from Amazon, mastectomy-supply sites (remember, a lumpectomy is officially a "partial mastectomy"), or maybe Royce's own site. Just so you know, Royce also makes knee braces and rigid "cast" boots for after foot surgeries or injuries, so fashion isn't exactly "Job One" for them.
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Wow, that sounds like a great option and a good price. Also--pretty colors. If we have to go through all this, then why not have something pretty....Thank you, ChiSandy!
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astyanax - if you're not a specialty size, walmart also has some good inexpensive options. Like this one https://www.walmart.com/ip/Hanes-Women-s-SmoothTec... I got one in a size one size up as I wanted something I could stuff with icepacks. I didn't need tight compression, just gentle support.
I definitely wouldn't spend a lot of money on it. I bled on mine through one of my dressings.....
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Thanks, I'll look into that! No, I don't want to spend a lot on something I will get messy...
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I had my lumpectomy on Jan. 4. I knew that I would need oversized sports bras during the healing process. My sister went to Wal-Mart for me and bought Hanes and Fruit of the Loom sports bras. However, I needed support when I woke up in recovery. I was expecting to be bandaged up with ace bandages but I wasn't. I had two bandages and that was it. My recovery nurse brought me a package of two Fruit of the Loom sports bras that hooked in the front. They were size 44! LOL!! I am normally a 38C. But they felt so good. I found that after lumpectomy gravity was not my friend. I also slept in these bras too. I am not used to sleeping in bras but the support felt good. I just started wearing my regular underwire bras this past week. My surgeon had to remove a lot of breast tissue somy left breast was swollen plus filled with fluid. On my left side I am down to about a B cup. But I am having BMX with DIEP Flap reconstruction on Feb. 22
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I was put in this flat pink straight jacket after my lumpectomy! It hurt horribly and I couldn't hardly strap it shut where the Velcro was as I swelled each day. I was expecting a surgical type bra with some cup shape, but no, they gave me this completely flat pink flowered thing that belonged on a teenager. I too went to Walmart as soon as I could, and bought some cheap hook in the front sports bras that were very soft. Since the surgeon made me perky boobs, didn't have to worry about being saggy in them. I lived in them for three months day and night. I still wear them and they are more comfortable than my old underwires, that with some I can still wear. The only difference is no more cleavage - but I could care less - beyond the sexy years for that look. I'll post a photo of this thing I had - the model is small breasted in photo, but imagine a 68 year old with 36 DD in this thing. The Velcro was all gappy in front and I'm telling you it was uncomfortable because it's just flat and definitely a straight jacket!
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I woke up with steri strips over the area where the tumor was taken out, and more steri strips where the lymph nods were taken out, that's it no other bandages. I was surprised. I wasn't offered any type of bra by the hospital. Luckily, I just brought my sports bra along and put that on before I left. I don't think I had a lot of tissue taken out but still I needed some support.
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This feels like a dumb question, but how long does it take for a lumpectomy to heal? I'm healing, but I still have sporadic pain. I guess it's been only 3 weeks. Am I just being too impatient?
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veeder - that was my situation too. Steri strips, nothing else. I did find wearing a sport bra convenient because it was a place to shove icepacks & in the early days, the less the breasts jiggled the better things felt.
Sfrankie - I think it depends how much tissue they took & the location. Are you doing all your stretches & arm exercises religiously?
A bit after 2 weeks I was back in Zumba and also tobogganed down a bumpy hill a few times for fun. I didn't use pain meds after day 3, but I continued to use ice gel packs on & off as needed. I also developed a small seroma around that time & that was a bit tender. I iced & massaged that until it resolved.
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Great, I wasn't given any stretches or exercises to do. What's generally recommended?
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I think you need to see a physiotherapist!
I had a consult with a PT before surgery & after.I was told to do these the first week https://drive.google.com/file/d/0B65gHKIqrPJ7bGFuR...
Then 7 days later I was told to do this (both face on & sideways to the wall) I was told to do them as slowly as I needed to but to do them frequently.
And to lie down on the floor and try to raise my arms and get them to go down on the floor by my ears (like in a diver's posture). I was told that if my affected arm didn't want to go down that far at first, to prop it up with pillows until comfortable and just rest in that position for 30 sec several times a day.
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I think every case of lumpectomy is different. Best to check with your doctors on exercises, as I was told not to bounce, so I could only walk or use a treadmill. I had a nipple completely removed and vertical stitches on both breasts, as well as around the nipples. Quite a bit of breast tissue was removed.
Sfrankie - yes it can take more than three weeks to heal. Just depends on how much surgery you had, but it could take 2-3 months to heal in some cases. Again, every case is different. Breast reductions are more complicated, as in my case. I still have some slight bruising on one side, and it’s been 4 months. (Being on blood thinners complicate the bruising too)
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My whole journey has been a comedy of errors. Lost test results, no one coordinating my various tests and procedures. My wire insertion before surgery was scheduled for the wrong time and my surgery was delayed 5 hours because of it. My breast surgeon has passed me off to an oncologist who I meet with tomorrow. Is there one main person who gets you through everything from mammogram on? Mine has almost been driven by insurance and whoever is in whatever office I'm at, at that time. I don't have any follow ups scheduled with the surgeon. I feel like I don't know who to go to with questions even.
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Sfrankie - that’s odd you have no follow up appointments with your surgeon. I would call his office and ask about that. I had 4 follow ups about every two weeks, and one two months later by my plastic surgeon. I had just one follow up with my breast surgeon, but she only took the tumor out, checked lymph nodes, but the plastic surgeon did the most work in the reduction process. I will have another check by plastic surgeon after radiation. I’m under a very large clinic of doctors that interrelate with each other. The cancer center is separate, but under the same clinic, so that may explain the coordination of appts.in my case. Every department has called me to schedule the appointments as if they know exactly what’s going on and what comes next. All my records are in that one clinic, so any doctor can see.
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I was told by my surgeon, random pain would come and go, ad healing progressed, about 6 mos. However if you ever run a temp, go to the dr.
I had surgery in sept. 2017, and am not allowed a follow up mammo til July 2018. As the Dr
Said the healing would not be over, plus healing from the rads.
Blessings
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I am still healing from my lumpectomy on Jan 4. I feel like I have entered a new stage. I have a large hematoma covering my whole left breast. As the swelling is diminishing and my body is absorbing the fluid, my breast is collapsing because there was so much tissue removed. That has been as painful as the first few days following the surgery.
Don’t forget cabbage. Cold green cabbage leaves are very soothing and healing to the breasts. I bought organic cabbage and when I needed relief I rinse one or two leaves and place them on my breast. My daughter reminded me that she used cabbage leaves following her C-Section and she couldn’t breast feed. I can’t explain it but it works.
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Blair2, have you made posts about your reduction? I am thinking of having one but am really scared. My lumpectomy was such a gong show with traumatic bleeding and bruising to the pubic bone! And PAIN! The thought of that happening again ... no thanks. I would be interested to read about your experience and how happy you are with the results.
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I am still healing from my lumpectomy on Jan 4. I feel like I have entered a new stage. I have a large hematoma covering my whole left breast. As the swelling is diminishing and my body is absorbing the fluid, my breast is collapsing because there was so much tissue removed. That has been as painful as the first few days following the surgery.
Don't forget cabbage. Cold green cabbage leaves are very soothing and healing to the breasts. I bought organic cabbage and when I needed relief I rinse one or two leaves and place them on my breast. My daughter reminded me that she used cabbage leaves following her C-Section and she couldn't breast feed. I can't explain it but it works.
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Runor - overall, I’m glad I’m smaller. I was a DDD originally and was quite large for my size. I think I’m a D now. (Haven’t had to buy new bras yet) The result as far as both breasts matching is like this. My right side is flatter in shape. My BC side, left side, ended up more pointy causing my nipple to face down a bit because of excess skin that was left above it. It was really obvious right after surgery and when I asked my plastic surgeon why it was left that way, I got this excuse that I was pretty beat up in that breast. I have no idea why he made it more pointy like that. It could be he filled too much in the area where tumor was removed. As the swelling came down, it has improved, but I think too much skin is still making the nipple face downward. It’s hard to describe in words. Anyway, if I barely pinch that excess skin, the nipple matches the other breast. Seems all it needs is a tuck. At my last visit with the plastic surgeon, I asked if that could be corrected. He said yes, and so I’m going to wait after radiation to see what that does to it. I doubt it will flatten it, but I know I need to give it more time. It’s not real bad, but I wonder just how good this surgeon is. Both breasts are the same size overall. The pointy side does not show through my bras, as the bras pretty much shape you anyway.
The surgery (last October) did not bother me much. I was swollen, had two drains that I wore for 5 days. My breasts stayed stiff for I think a good two weeks. I had more pain where the lymph nodes were removed. I had to keep that bandaged just to keep bra straps from rubbing up against it. No infections, as I changed the bandages every night and I was given a yellow antibacterial guaze to apply on the nipple that had been completely removed (the pointy one). It had stitches all around it. Looked really scary - all of it looked scary, but after those stitches were removed (which wasn’t fun), it looked better, more pink each week. (3-4 weeks) I had feeling in them too which was a good sign that they would stay alive. Then I was told to start using lotion. The skin was quite dry and the waxy stuff they use to protect the skin, took a while before it flaked off. I bought some scar away tape and started using it about a month and a half after surgery. I used it just on the vertical stitch lines. Once the raw skin healed, that’s when I started using it and the scarring is still pink right now, but very flat and smooth. The pink will take a while to disappear, but it’s under the breasts where it’s not noticeable. My left side still a little bruised. So, other than the slight pointy shape, I’m satisfied. I’m still trying to get use to their new shape and my bald head! It’s a lot to accept.
Sometimes I still get a twitch of mild pain in my right breast, but nothing to panic about. Should have more in left BC side, but I think it’s just natural healing pangs in the nerves. I went through a bypass - that scar took a good year to fade. I also had real minor bleeding where the breasts hang over the bottom stitch line, but I think the bottom of the sports bra was causing that irritation. I used my daughter’s sanitary pads to cushion those areas. I’m on blood thinners, so I bleed easily as well as bruise unfortunately
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Sfrankie - I, too, had to coordinate all my care because my surgeon works at a hospital that is building a cancer center that is not open yet. So I had to find a RO and MO on my own, arrange second opinions (for pathology and RO), and make sure I kept good records. Usually the surgeon does a post op check 10 days or so after surgery, so that is due NOW. Could the nurse have told you but you don't remember? It should be an easy call and tell them you need it right away since you are 3 weeks postop tomorrow. You'll need to ask around and get recommendations for RO but I'm glad you have a MO appt tomorrow. If you like him/her, they can probably guide you to the best RO in your area (I assume you are doing radiation?). I had my appt with the MO before I met with my RO (then changed to a different one after the second opinion plan seemed better), but that was mainly due to scheduling problems due to the holidays. My MO says that once radiation is done, he will "drive" my care from then on out and help coordinate things and make sure I have the followup I need. He is also the one that did some baseline labs I requested, like Thyroid studies and lipid profile, since I wanted those prior to radiation. I've only had 1 visit with him but he spent an hour with my husband and me (I had a page full of questions!). I will see him a couple of weeks after I complete radiation. Radiation usually starts 4-8 weeks after lumpectomy (time to heal but not too much time so they can kill any lingering microscopic cancer cells).
It is hard when you are not in a center that has a cancer center with coordinated care where practitioners actually communicate with each other. I have had some delays because I had to learn about BC and how to coordinate this crazy process, but you can do it! Read all you can about your individual BC, know basic protocols (like rad therapy guidelines, need for chemo, genetic testing needed, Tamoxifen if you are premenopausal and AI's if you are postmenopausal, etc.) so that the terms they use are not so unfamiliar when you discuss them and you know your options ahead of time. Get copies of EVERYTHING - your radiology, pathology, and lab reports - so you can look up the particulars and have a true understanding of what is going on with you. Good luck!
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DownNotOut, Thanks, that really helps a lot. It boggles my mind trying to drive the process myself but it's encouraging that I'm not alone.
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LX was 11/1, with re excision11/14/17. Then rads started 12/26, completed 1/18. During rads I'd have fast, sharp, breast pain. Rads nurse said it was the breast still healing from surgery. 2/14 will be 3 months out, I still get odd ball pain. Nothing continuous, but fast sharp, maybe make me say "ouch" out loud, but then gone.
My first mammo will be 6 months after my last rads, July 18. Can't imagine squishing my breast now, that would drop me.
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I have a question about reexcision. Although, I don't know the details yet apparently there is a small area from my lumpectomy that has to be cleaned out. When you had your re excision did you have to redo all the diagnostic tests? I had MRI biopsy and wire localization for the lumpectomy and wonder if I have to go back and get another MRI with markers put in or the wire localization. Also, I don't understand how the surgeon will find the margin that needs to be cleared. The tumor was 5mm and it seems a good portion was taken out during the biopsy, and then during the lumpectomy. How much could be left?? Thanks for any information.
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