Lumpectomy Lounge....let's talk!
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ChiSandy, Thank you again for all the information. Honestly, you have asked questions I don't have the answers to, but I'm going to find out. I have a lot to work to do this week!
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Abbidoodle- she's taking a wait and see approach at the moment. I will see her again on the 25th for the port removal and see I found it is still painful. Her thought - when I saw her in May was delayed reaction to the radiation. It's still painful and there is some hardened/lumpy tissue. I've given up my underwire bras and bought something to attach to the seatbelt that should help cushion I'll post after the 25th,
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I had my lumpectomy on 2/28/2020 and they took out 9 nodes so I have lymphedema. I also had a seroma after my surgery where the fluid biult up and my surgeon drained it; he did not tell me that the seroma makes you more likely to develop lymphedema. I don't know why maybe I did too much after the surgery but I was not given good advice by my surgeon. Or the discharge from surgery. I am so angry because my breast is horrible after only 20 radiation treatments my skin is dark and even my breast turned even darker and the skin above and around my breast is really dark and the pain is ridiculous every time I move my arm because of the swelling under my arm and in my triceps the numbness is stupid. Oh and this is really good my radiation oncologist told me no one gets lymphedema so I had to get my on referral to the lymphadema clinic and they told me I should have came in before surgery and get measures for possible lymphedema. I really think if I had of seen them first I would not have gotten it. But I am still getting conflicting information about everything.
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Darlene63, your team certainly let you down! I hope that you find a good MO who is helpful. To help us help you, please fill out your profile, go to SETTINGS and make each and every item PUBLIC. Then it will appear after your signature. Sometimes it is helpful to know where you are located. I wish you luck.
HUGS!
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Abbidoodle,
Your post caught my attention. Your experience sounds similar to mine, and I hope I can reassure you by saying that mine did finally get better. It was a long process, but it did resolve. I developed a seroma at the lumpectomy site very shortly after surgery, but not one at the SLNB site. When I went for my mapping prior to receiving radiation, my RO and Surgeon consulted over whether the seroma should be drained or not. We all agreed not to drain it and radiation went on as planned. The theory was that radiation would cause the seroma to shrink, but it didn't. And my breast had some significant swelling by the time I was finished with radiation.
Believing I was developing breast lymphedema, I went to a lymphedema specialist who felt that my swelling actually was not breast lymphedema and that if I had the seroma drained, the overall swelling in my breast would resolve. I kept putting it off, but then I also developed some cording down m rib cage that was extremely painful, so I finally went back to my surgeon in December to have it drained, almost a full year after my surgery, and seven months after radiation ended. The seroma came back quickly and just as large, so I had it drained again in February. It came back again, but not as quickly and a little smaller, and I had it drained again in March. Each time I had it drained, the overall swelling in my breast would resolve only to return once the seroma filled up again. I was going to go back again in April to have it drained one more time but then the whole pandemic fiasco prevented that. I was upset and felt that the seroma had come back bigger and was maybe even as big as it was the first time I had it drained. I had a few days where I felt my breast was so swollen that I must have breast LE after all, but then, I kid you not, I woke up one day shortly after what would have been my one year anniversary of finishing radiation, and my seroma was so much smaller I could barely feel it. My breast is back to being soft and squishy and the same size as the other one. Even my scar is looking better because the skin is not being stretched with the swelling.
For over a year, my breast was red, painful, and swollen, and finally, overnight, it resolved. The skin underneath my breast had felt thickened but even that feels much improved. I hadn't realized how much it was affecting my range of motion, but my golf swing doesn't hurt this year like it did last year, I can stretch overhead to reach something on a high shelf, and I just spent the last two days doing heavy gardening (digging through hard clay, shoveling and carrying bark, etc.) and I feel no pain. Best of all, I am able to wear many tops that I had simply given up on because they just looked funny and didn't fit right.
As far as having a mammogram.....when I had mine last August, while my breast was still very swollen, while I had that large seroma, and while I was still experiencing much pain, I was quite nervous about having a mammogram. Oddly, it did not hurt at all. It hurt to sleep on my stomach, it hurt to hug someone, but the mammogram did not hurt. Hang in there; it should get better. I was very discouraged and had just about accepted the fact that I would always have this one breast that would be huge and hard in comparison to the other one, but I am happy to say that is not the case.
I hope it resolves for you as well!
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SUPer52, Thank you for telling me your story because it does sound very similar to what I'm dealing with right now. I feel a lot better about it now after reading what you posted. I really think they don't explain enough about all that happens with radiation and the side effects. All I was told was that towards the last of the radiation my skin might feel a little "sunburned". I never felt the burn, just so much hardness and color and shape changes. I guess I'm just in a hurry to return to "normal". you've given me hope that eventually things will get better. I had 2 large seromas that were successfully drained earlier this year. My surgeon assures me that it should eventually get better. Again, thank you.
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Darlene63 - I hear you about lymphedema. I had 23 nodes removed. I did see a physical therapist who specializes in breast cancer patients prior to surgery so I was lucky there. I still developed lymphedema though. But seeing a physical therapist at this point is definitely worthwhile. She made a big difference in helping me reduce swelling after surgery and throughout radiation. She helped me regain range of motion. She fitted me for compression sleeves and showed me how to use KT tape. So very helpful.
Try to keep seeing your PT until she releases you from treatment.
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Thank you so much for your reply. I have not told very many people about my breast cancer because I feel it is up to me. My care team has not been that helpful and I still don't know what to expect and every one has a different opinion. I am still angry about the entire situation; maybe that will resolve with time but it is just a pisser.
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Thanks cm2020, I am just now trying to move forward; it is upsetting to me that doctors have trouble not all but my with talking to patients.
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SUPer52- my seroma went down to almost nothing but it took a long time. My BS drained it once but it popper quickly back up. There is a very small one that they saw on my mammogram and felt the need to do an unltrasound to make sure if was fluid and not a mass.
My RO kind of glossed over the changes that might come from radiation. He and his team really focused on the possibility of burns but not the tissue becoming hard or lumpy. I am hoping that it is reversible and not lymphadema but I'm not sure that I'm that lucky
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Seromas are kind of like those trick birthday candles that you think you've blown out but then they reignite. The body senses a "cavity" that wasn't there before, and wants to fill it in. Drain it and it's likely to fill back a few times before shrinking down to nothing.
A lot of people misclassify radiation burns as sort of a bad sunburn. They may appear the same externally, but internally they are starkly different because of the causes of each. Sunburns result from UV exposure, and the rays don't penetrate further than the bottom of epidermis. The burn is from the outside in, and not very far in at that. Radiation burns are just the opposite, What you see is the tip of the iceberg: radiation beams are intended to reach down into the breast tissue and destroy stray tumor cells that surgery might have missed. The burn happens from the inside out--the most extensive damage is to the breast tissue, with a bit of bounce-back to the dermis, where skin cells are made. Normally, skin cells are made in the dermis, find their way out to the epidermis, eventually die and slough off and are replenished by new cells making their way up from the dermis. But the radiation beans injure the dermis, so it doesn't make new cells. When you see broken skin, blisters or peeling, it's because the epidermal cells that died off don't get replaced--so you're left with tenderness and broken skin because the dermis hasn't made new cells to replace the dead epidermal cells. Eventually, after the beams are done destroying the tumor cells, the breast cells heal and dermal cells begin to regenerate, eventually replacing the dead epidermal cells with healthy cells from the dermis and restoring texture & thickness.
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I had partial mastectomy with reconstruction and many sentinal lymph nodes removed right breast and armpit, Feb. 13, 2020. Only trouble I had was I had to have seroma drain X 3 from armpit, 2 weeks after surgery. I had quite a bit of fluid removed each time. Aprox. 100ml. Finally because this is an empty space and needs pressure to stop from filling up, I took one of my dog balls and held it under my armpit for a week. I never had to have seroma drained again. Gone. I had 6 weeks of radiation following, besides developing 2nd degree burns along collar bone, and reddness of chest and back area did really well. My skin now 5 weeks post radiation is back to normal but with a tan. I make sure I have sunscreen on every day because chest area burns really quick. Incision healing nicely. I did have many internal sutures come to the surface that I clipped. No longer case. I keep very active, doing my excerises every day, weights, bands, walks. And overall am doing well. Was declared a cancer survivor yesterday being no evidence of disease and I came through all. (feels like I've been to hell and back). Today actually went out deep sea fishing, which I couldn't do last year due to port placement. I did great. I'm back at golf, yoga, riding my bike. Life is great, I'm so blessed. I had stage 3 triple neg breast cancer right breast. I'm also in a clinical trial with the medication Atexolizumab, only 3 more treatments to go. I had such great support with family and friends, and this website really helped. I was ready to throw in towel many times.
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I didn't have any dog balls (I don't have a dog, and my cat no longer has balls...sorry, couldn't resist), but my lymphedema OT gave me a couple of "Sweet Spot" pads to stuff into my sleep bra--they definitely accelerated the shrinkage of my seromas. They are little quilted velour cushions.
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I am not sure if I just jump in here, but my lumpectomy was May 11, and last weekend I played tennis twice(so four weeks post surgery) My RO seemed to think exercise is good, but after my first radiation treatment yesterday, I discovered a bit of yellowish(very little, a spot) discharge on my bra, then more today. RO looked at breast after my treatment, sent a pic to my BS and she prescribed an antibiotic, but I am wondering if this is a seroma developing? I am the most out of sorts emotionally I have been since my diagnosis in March and now this thought/worry is not helping. The breast is pinkish and warmer, and I told the RO this today(obviously she can see the pinkness of the breast skin) but she never mentioned seroma.
Should I do anything? Other than ask the RO tomorrow if she suspects a seroma?
Thank you
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A seroma is considerably below the surface, so that yellow stuff probably is something else that may be infected (or simply lymph fluid making its way to the surface). It's way too early in the course of your radiation to have any skin breaks. You might have a touch of mastitis. A breast seroma would more often manifest as swelling.
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Can anyone out there tell me if they've experienced this? I'm 14 months out of having my lumpectomy, finished chemo in October 2019 and radiation 6 months ago. Ever since the surgery that breast has been red, warm, and sore. I just had my 1st mammo today and I'm not concerned about cancer, but every nurse or tech I've seen have all commented on how it's still so red and warm. SO says it's from radiation, but it's been this way the whole time. How long does this last? Is this cause for concern?
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6 months is still well within the "aftereffects" period for radiation. But I would check with the surgeon or oncologist, requesting an ultrasound. It's unusual to have redness, heat and soreness 14 months after lumpectomy without radiation having been a factor. (An infection would have progressed much further and faster). It took a long time for my surgery breast to return to its natural size, color and temperature. You might want to ask for a lymphedema consult. My lympedema OT gave me a couple of "Sweet Spot" quilted velour cushions to wear in my bra (even a sleep bra at night) to help compress the seroma so that it would shrink faster.
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Hi Abbie mine was red and warm for quite a long time after radiation. I was sent for a lymphedema consult after seeing my surgeon who felt it was radiation related but felt the consult would be a good idea. All the best to you. Stay calm if you can, and do what feels like the next best step. So often it really is " nothing" but in breast cancer world it can take a while to get there/"prove it". ♥️🙏👍
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A big thanks to all who have answered my questions. It's great that this forum is here and that others help answer questions that are based on their experience. There's nothing like hearing it from "the horses mouth".
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Abbie, I found gentle but constant compression to be a boon. I began wearing a leisure bra to sleep (an unrestrained oversized "Thelma & Louise" looked lopsided beneath my nightwear). Stuffed those SweetSpots in, which finally did the trick. Good thing, because they didn't make compression bras, camis, or tees in my (then) size. I have gotten into the habit of not going braless even now--at first it was vanity in case I had to answer the door in my PJs (whether for deliveries or repairmen at home or room service at hotels), now it's force of habit.
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I It has been one whole year since I was able to do this. What a great day. Surgery in Feb. 2020, healing nicely. finished radiation 6 weeks ago. Hair even coming back. 0 -
Thanks ChiSandy for the clarification on the radiation effects. Even though I am 8 months out from rad treatment, I have a feeling that that is what I'm experiencing- not breast lymphadema. Hopefully my BS will agree when I see her on the 25th. If not, I guess I'm going back to the lymphadema therapist and looking for a good compression bra
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Martaj- nice catch!
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Did so much kayaking this weekend. It felt good to be out on water. My afftected arm armput area sore. Will take it easly today. Surgery,mastectomy, sentinal nodes and reconconstruction of both breasts Feb. 2020. 6 weeks radiation, quess I'm just pushing too hard. very hot and humid here. But being on the water in my happy place made me feel good
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Happy places are always a good thing, and often the best medicine!
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I was just recently diagnosed with IDC on June 3 2020. Surgeon says that it is stage 1, 2cm, and doesn't appear to be in my lymph nodes. I have truly been struggling with making my final decision. Lumpectomy or Mastectomy. I was suppose to make my decision on July 2. However I asked for a few more days. My new deadline is tomorrow. What are some things that I should take into consideration about the lumpectomy when making my decision? ....good or bad...
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Hi, stepitup01. Welcome to the sorority nobody wants to pledge, but it is what it is. Points to ponder before deciding on type of surgery: how big is the affected breast? Where is the tumor located? Know that they do take a chunk bigger than the tumor so that they can (hopefully) get clear margins--mine was 1.3cm (also Stage IA--clean nodes), but they removed more than twice that much breast tissue. My breasts are quite large, and the tumor was located "high and outside," as the baseball announcers say. So there was still plenty of breast remaining--and the surgeon was so skilled that she left me with a nicer-looking breast than before! OTOH, if you have small breasts and the tumor is located closer to the nipple or cleavage, a lumpectomy might not give a good cosmetic result. In that case, you might opt for a unilateral (single) mastectomy and reconstruction. A dear friend of mine had multifocal (several scattered tumors) DCIS in one breast--but her breasts were quite small and she hadn't even worn a bra in 30 years. At 73, she wasn't going to start dating any time soon. So she opted for a bilateral (double) mastectomy without reconstruction.
Another thing to consider is if you are carrying a genetic mutation that increases the risk of recurrence in either breast. (BRCA1, BRCA2, and the less-common Chek2 and PALB). Another friend who had average sized breasts and exactly the same stage & grade of IDC as I did was tested before surgery and came back positive for a Chek2 mutation, So she chose bilateral mastectomy with immediate reconstruction (tissue expanders and eventually implants).
Another consideration--are you willing to get radiation? WIth lumpectomy for IDC, radiation is practically a given; with mastectomy, unless the tumor is close to the clavicle or close to the axillary (armpit) nodes, radiation is rare.
Recovery from lumpectomy is relatively quick: I was back at work a week later. No drains to have to strip. And lumpectomy is a same-day surgery: in in the morning, home before dinner; and sometimes not even a prescription painkiller (I only needed Tylenol). Mastectomy is at least an overnight stay, a more uncomfortable recovery, and having to manage drains, which are usually in for at least a week.
So you need to assess your home situation: do you have family at home to help out? Can you afford a visiting nurse or healthcare aide to come in daily, and a housekeeper to come in at least weekly? Does your home have stairs? With lumpectomy, it's unlikely you will need assistance with activities of daily living.
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