Lumpectomy Lounge....let's talk!
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AliceBastable that's great news about your BP and your A1C! Were you dx'd as type 2 (I'm assuming)? My son's got type 1, that disease is a real bitch
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I'm in the middle of a decision between a second lumpectomy and a mastectomy and immediate reconstruction.
My pathology report from the initial lumpectomy came back with positive margins at medial and anterior margins. A tumor and DCIS was removed but no IDC found. DCIS was about 4cm total which is significantly more than what showed on scans. DCIS was grade 3 with "expansive comedo necrosis".
My surgeon told me ahead that there was the possibility of positive margins, no way to confirm that they would get all the DCIS, but still was hoping for better news. Now, I have to decide between a second lumpy or masty, but my concern is that my boobs are A/B originally and its definitely looks smaller and probably will continue to shrink as the swelling reduces.
The first excision was 5.3cm x 7.2cm x 2.7cm, and if she goes back in for another chunk, I will be left with 1/3 of a breast which will shrink further with radiation. She already told me the cosmetic outcome won't be good but she feels a lumpectomy is still an option, but not ruling out a mastectomy. At my first consultation she was adamant about a lumpectomy vs a mastectomy.
My initial thought is a left mastectomy, which was what I wanted all along, but I'm open to other perspectives. Although I'm nervous about the recovery time and healing process but I'd like to put this behind me as soon as possible. My husband is a strong proponent of reconstruction if I decide on a mastectomy because he worries about the long term impact on my mental health with going flat.
My treatment is at a regional center (Trillium) but would like a second opinion at any of the Toronto teaching hospitals, just don't know how possible that is, but I am going to try anyway. I have another meeting with my BS next week and she has lined up a referral to a Plastic Surgeon at Trillium.
How you would approach this if you were in my shoes? I appreciate your thoughts?...
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Afternoon ladies, on an earlier post I shared having genetic testing due to yellow flags from my colonoscopy, I also included the BC genes too. I got the results Wednesday afternoon with all nine results being negative, what a huge relief! So my revision surgery was completed this morning (scheduled in May) with removal of bilateral dog ears (skin cones) and side fat bulges. My PS completed the procedures in about an hour! I’m looking forward to seeing the cosmetic results in a month when bandages and some of the swelling has gone down. I know the swelling will continue to dissipate over several weeks or months! My pain is similar to my lumpectomy a moderate to high sensation of being tender. I probably will take the prescribed pain meds for 2-3 days then ibuprofen or Tylenol like I did with the lumpectomy. This time I’m taking/making time for myself so I can heal mentally & physically which I wasn’t able to do previously. I’ll keep you updated
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Debsauga- I had a reexcision. Going in, my surgeon said due to my small breast she wasn't sure if she'd have to do MX. I trusted her and let her know that if she felt that was best, I was ok with it. I woke with LX, and was glad - same issues you mentioned - I didn't want long recovery & healing of a MX.
With that much being said, if I wear a bra (only when I have to. lol) I notice that cup is not full, due to loss of tissue. Otherwise it's just a divot I live with gladly. (It's at 12 o'clock)
You have to do what you feel best with. If its reconstruction you want, then that's right for you. Best of luck.
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I had 3 lumpectomies 4 days ago. The past day or so, I gave extreme stabbing pain on one side usually when getting up or really whenever switching positions. Has anyone else experienced this? Also still having difficulty lifting one left arm up without pain.
Thanks in sdv
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Peggy
That was the main reason I got a better recliner (that opens almost flat). Could not sleep in the bed for days/weeks. I was told to take it easy for several days and was able to go back to work the next week, but it wasn't easy. Of course, my surgeon and I discussed my needs and agreed on the plan to get "back to normal".
Also, I made good use of thin ice packs, but had to change them often while still wearing the post surgery bra and a tight fitting cami.
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Debsauga I think you need to have that consultation with the PS before making a decision. Radiation can impact your options so keep that in mind. There are some options to use some of your natural tissue as well. You might even want to see if can meet with an RO as well. My RO had the suggestion of doing IORT since I was having immediate reconstruction. I still did 15 rounds of whole breast radiation too, but he wanted to give a boost to the tumor bed before my PS did her thing. Remember everyone is different.
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Debsauga, I had a lumpectomy with clear margins, but mine was for Grade 2 IDC, no DCIS; and my breasts are huge (the R one still is, but is now nearly 2 cup sizes smaller than the massive L). Were I in your situation—as was a small-breasted pal with unilateral extensive (3cm) multifocal Grade 3 DCIS with comedonecrosis—I would think about bilateral mastectomy (for symmetry) with or without reconstruction. She opted to stay flat, as she was 70 at the time, widowed with no desire to date, and hadn’t worn a bra in 30 years and wasn’t about to start. Therefore, since her DCIS was hormone-negative and she had BMX, that was it as far as cancer was concerned: no radiation, no chemo, no endocrine therapy. Not sure what your tumor’s hormone-receptor status was, but if you have the chance—as did my friend—to put this all behind you I would consider it. (You also didn’t mention your age)
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chi, what is comedonecrosis?
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April: This is a definition I found online, but Chi may be able to explain it better.
"Comedonecrosis" describes a situation where the entire breast duct is plugged and there are dead cancer cells scattered amongst the live ones. It is categorized as High grade DCIS with a high risk of escalation"
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Thanks for your comments. I'm waiting for the referral to the PS, I hope to hear something next week.
Chi, I'm 44 so still "young", at least I think I am. I really would like to keep my healthy breast, slight asymmetry wouldn't bother me so much as total loss of sensation in my boobs.
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thanks deb. btw: 44 is young!!!
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It’s called “comedonecrosis” because the dead cells in the duct have the appearance of blackheads, aka comedones
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Anyone experience nerve pain post-lumpectomy? I'm about 10 days out, and have stared feeling a sharp, hot pain where my underarm meets my back on the affected side. Needless to say, I'm not a fan. Will it subside on its own or do I need to call the doc
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Paloma unfortunately nerve pain is common and can actually come and go for awhile as the regenerate. I think I read the one woman was still getting some 2 years later. I had some under my arm but I also had reconstruction and with that my nipples felt like they were on fire for 4 weeks or so. Of course if you are concerned then reach out to your doctor, they might have some recommendations to ease it. Sometimes they do nerve blocks for surgery to help ease the pain and those can wear off in about a week. Good luck.
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Paloma - mymomsgirl is right. I had the same pain as you for about six weeks - I am three months out now and mostly it tingles. In the middle of rads and I am getting a few zingers in my breast and the back of my arm. Nerves are funny things they hurt when they grow back and I think they are really pissed off at us. Take care, check it out with your doctor but my guess is its normal even though painful.
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Thank you Mymomsgirl and GiddyupGirl. It's good to know where others have been. It's painful but manageable. I'm going to go to an acupuncturist in Monday for my edema. I'll see if they can help with this too. Best wishes, friends
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I'm a year out and the node incision near the armpit still snarls at me occasionally.
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help. 5 months after lumpectomy, 2 months after 33 radiation I was doing fine, suddenly swelling between axillary an Lumpectomy incisions . Normal or panic? Not huge,, now same size and I can feel it. Feels tight
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Benji69 - I wonder if the swelling is lympedema? I have it, but I went to physical therapy which helped so much. The PT specialized in breast cancer patients. She showed me manual lymph node drainage methods and exercises.
Radiation really aggravated the lymphedema. But there’s hope because I am able to keep it under control with diet, exercise and compression sleeves and/or KT tap
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Paloma & Benji—symptoms are scary but totally normal.
Paloma, when lumpectomy & SNB are performed, nerves are cut. Within weeks the severed endings begin to “find" each other and synapses regenerate, a process that can be ongoing. September makes 4 yrs since my surgery, and I still get those painful zaps.
Benji, unlike an external burn like sunburn or scalding, radiation damage manifests from the inside out. I only had 16 targeted treatments—but my R breast went from being the slightly smaller one to half again as big as the L due to the rads increasing the size of the post-op seroma and causing a significant side-bulge. Eventually things calmed down and the R one is a bit smaller than its immediate post-op pre-seroma size again (1-1/2 cup size smaller than the L). They're both big and make buying bras difficult (and you can tell when I'm wearing a nightgown sans bra), so I'm planning on reducing & lifting the L one once my body has decided what it determines to be its goal weight after the near-keto diet my MO had the bariatric clinic put me on.
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Scorpiox2...
Hi...saw your questions regarding the 5 day radiation treatment. I had the 5 day 2 a day treatment...it was a bit uncomfortable with the savi divice I had to leave in for 8 days....they inserted it on a Friday and then I started radiation on Monday. I did have a bit of a sunburn on my breast but aquaphor cleared it up. Also, I have a good amount of scar tissue built up. My NP said it was unusual but non the less I have it. All in all, I was glad to have it over and done with in 5 days....
Best of luck!
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Benji as others said the swelling is probably lymphedema. As for the tightness, radiation shrinks your muscles. My PT said that people often come to here about the tightness between 4-6 months, I saw her after 3. She gave me stretches to do along with other exercises. She said radiation works for a year so I need to keep doing these for the next year. I would suggest chatting with one of your doctors for a PT referral.
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Benji, also be careful about acupuncture--even if the edema in your breast is a radiation-enlarged seroma, you are still at lifelong risk for developing lymphedema. Needles of any kind on that side are particularly risky. Some hospital systems' physical medicine depts. have a lymphedema specialist on staff, and those therapists who do lymphedema & cording therapy (prevention as well as treatment) are usually occupational therapists, aka OTs. A good resource is stepupspeakout.org, which is affiliated with LANA (the lymphedema professional org. co-founded by my specialist Dr. Joseph Larry Feldman): it's one-stop shopping for lymphedema (aka LE) education as well as patient information and a network of specialists & therapists.
I wouldn't necessarily rely on primary care docs--or even breast surgeons or oncologists in hospitals w/o LE resources--for advice about LE. The lymphatic system takes up 30-60 minutes of a four-year med. school curriculum, even less than nutrition.
A friend of mine was about to undergo a BMX with bilateral SNBs. I was her "designated escort" to the hospital, and asked the surgeon's NP about how and where she should have blood pressure checks done, IVs inserted, blood drawn or injections given, since both arms were going to be at risk. The NP looked at me "uncomprehendingly, like a cow at a passing train" (thanks, Don Henley) and said she'd go ask the surgeon. When the surgeon came in, I asked, and she replied "they treat LE with compression, right? Don't sweat it." (My own surgeon rolled her eyes when I told her at our next checkup and sighed, "we've still got work to do, haven't we?").
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My LE therapist thinks that the swelling in my lumpie breast may be the start of LE. She has taped me up with some kinesiology tape and has me jiggling/massaging the breast to release the fluid. I am doing some of the exercises but as consistently as I was first post surgery. I blame chemo SE and life for getting in the way of that.
Benji - get a referral to a lymphadema therapist. They might be able to help before it really becomes a problem
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I really appreciate the advice. ChiSandy you could start a consulting business. I know I rely on you. I was only worried about lymphadema in my arm( 12 nodes, 5 cancerous, 2 huge even after 6 months of chemo). I saw the local PT lymphadema specialist while still doing the 33 radiations and asked about massage. When she said it was dangerous during radiation because it might move the cancer I decided to look elsewhere. I followed the University of Michigan videos and they were very useful. I don’t have a problem with my arm. I believe I do have it in the breast and arm pit. I’ve started wearing the bras I wore after surgery, more stretching. I’m trying to ignore it and pay attention at the same time. One year of my life devoted to this seems long enough
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Chi Sandydid you get the ok on the Cbd from your oncologist? I have recently started to take it and am afraid to ask as I am sleeping and even dreaming and don’t want to me told I have to stop!
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Well, tomorrow is the start of the process for me. I have to go in to the radiology lab at my breast center and have tags put in with ultrasouns guidance to prep for surgery Monday.
Monday morning i go to the hospital in the morning for a tracer insertion to prep for the sentinel node biopsy, then surgery itself is at 3 PM.
I am a little bit of a mess. I try so hard to be positive, but I worry, as we all do.
Is there any advice for the tag insertions or the injection on Monday that anyone could pass along?
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Hi Catob: can't help with the tag insertion but the injection I got. Hope you prefer to know the truth. Nurse navigator said it was a pinch or little burn - the tech was great and honest. Said for some just like getting a shot for others it hurts like a bitch but only for a couple of minutes. (Mine was right at the edge of my nipple) It burned but I found one good scream counted to sixty in my head and it was done. However I am the biggest weenie alive about needles, so I am sure you will do better than me. Will be thinking of you on Monday - you got this.
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I lied - I did get the tag only they called it a wire. (how quickly we forget - my surgery was a couple of months ago) Tag was easy quick pinch of freezing and then you don't even feel the tag.
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