Lumpectomy Lounge....let's talk!
Comments
-
I agree..it really is a crap shoot! Thats what so unsettling and making it hard to decide. In my 16 years of doing mammo and working fir a breast surgeon oncologist ive seen the full spectrum. Perfect outcome and horrible outcome. My gut is telling me bilat masect with dflap reconstruction. Thank you so much for your response. Im researching and reading all i can. And talking to my patients..but its not something that is easily approached for alot if survivors depending on their stories. Again..thank you.
0 -
Peggy,
I'm going on 2 years now and I still have breast pain... figure I just have to live with it
Judy
0 -
IHGJAnn49, Judy, you really shouldn't be having breast pain after 2 years. I find I have discomfort in my shoulder and side on occasion but not pain. I know you're not very happy with your MO, but perhaps your cardiologist will listen and help you. We all need caring doctors even if they aren't that familiar with breast cancer. Good luck!
HUGS!
0 -
Cjzach10, what is your diagnosis? That's a major - or only - basis for your decision. Unless you have an agressive or unusual cancer, an lx plus radiation is supposed to have the same result as mx, but with much easier surgical recovery, barring complications that can occur with any surgery. Remember, with an lx, you can always have an mx later should that become necessary. With an mx, there's no going back.
0 -
Hi Cjzach10 - When I had my consultation with my surgeon, we discussed both mastectomy and lumpectomy. I'd always assumed I'd have a bilateral mastectomy if I was ever diagnosed with BC because I'd had so many biopsies over the years and there's a lot of cancer in my family.
However my surgeon explained what was necessary for my early, small, non-aggressive cancer and that lumpectomy PLUS radiation had equivalent survival statistics as mastectomy. And, as AliceBastable said, one can always do a mastectomy later if need be.
I had the lumpectomy and qualified for SAVI Brachytherapy radiation and I feel good about my choices - I trusted my surgeon, though she would have done whatever I chose.
AliceBastable asks the crucial question: what's YOUR diagnosis? We each have to make decisions based upon our own particular set of factors and each of us has a completely different profile and set of particulars.
Good luck - keep us posted.
0 -
My decision will take into account my diagnosis. But..i have other health issues that require me to be off blood thinners for every little thing i have done. Having another stroke while off blood thinners scares me more than cancer. I was extremely lucky with the first and hopefully only stroke! So that tidbit complicates my decision. I don't want to be off blood thinners any more than i have to. And I've seen too often..more bxs..more surgeries..and i don't want to do any if this any more than i have to! Thank you ladies for responding! Any and all view points are needed and greatly appreciated at this point.
0 -
My decision will take into account my diagnosis. But..i have other health issues that require me to be off blood thinners for every little thing i have done. Having another stroke while off blood thinners scares me more than cancer. I was extremely lucky with the first and hopefully only stroke! So that tidbit complicates my decision. I don't want to be off blood thinners any more than i have to. And I've seen too often..more bxs..more surgeries..and i don't want to do any if this any more than i have to! Thank you ladies for responding! Any and all view points are needed and greatly appreciated at this point.
0 -
Ring,
I would recommend getting a bigger size athletic bra. The one i got was too tight. Maybe the swelling. I bought a more comfortable one four days after surgery because the binder given after surgery was uncomfortable.
🤗 Cindy
0 -
Cjzach10, the only thing I had to stop prior to surgery was Metformin. I'm not on prescription blood-thinners, but some of my OTCs are for that purpose. And a mastectomy is a much longer, more complicated surgery than a lumpectomy. I would think most experienced surgeons would have come across this situation before. Schedule a talk with yours and have a list of your questions and concerns ready.
0 -
lumpectomy and SNB is tomorrow AM for me -- thank you for all the advice you give in this forum -- I'm ready with ice packs, button down shirts, miralax, etc. and a full Netflix queue, most importantly. filled my pain relief prescription today and will be at the ready to take it if I need it. thank you! Diane
0 -
Good luck tomorrow, DC Booklover. I enjoyed audio books during my recovery, no need to open my eyes. Actually recovery wasn't bad, so don't stress. OTC pain meds worked great for me by the next morning, and I took the prescription pain meds more for the pain in my throat from intubation than the surgery the first night. Again good wishes for a speedy recovery.
0 -
I had a reduction lumpectomy. It is great to be smaller, but my breasts aren’t the same as the nipple on my cancer side looks down because of too much skin left above it. (It had to be completely relocated). My plastic surgeon said he could correct it, but they want you to heal a good year from surgery. Radiation shrank that side a tiny bit, but the only reason I will regret not going through with a mastectomy would be if I had a local recurrence event. They say there’s hardly any additional threat of that happening compared to total mastectomy. The shape of both look about the same and the radiation shrinkage is not noticeable when wearing a bra or through clothes. I kept telling my PS prior to surgery to make my cancer side larger to accommodate radiation shrinkage, but I guess that’s not taught in plastic surgery school. I’m a little upset over the placement of the nipple, but it may have been tricky to fill extra skin into the cancer side since my tumor was right behind that nipple. In fact, they weren’t sure if they could even save it, so I can’t complain too much I suppose. The doctor just said I was pretty messed up on that side post surgery due to tumor removal, etc. So I’m letting it heal a while more and will go from there. I still have knots (scar tissue)at the bottom of this breast and it stayed bruised a very long time.
0 -
Hello everyone
Went to the breast surgeon for post-op check yesterday. Im healing well. I have much to be thankful for in this journey but of course there is always something for me to obsess over. Now Im worried about my Stage 3 status and that I'll need chemo. I dont know if me being post-menopausal will tip the scales or not. Does anyone know how long results take if my MO orders it? My appt is next Wednesday.
🤗 Cindy
0 -
one more Q from me — how restricted are your Arm/underarm movements after a LX and an SNB? Just trying to think what I don’t be able to teach and do (reach up for things, unload dishes,etc.) and for how long.
Thank you!
Diane
0 -
Diane,
I had my surgery on 7/16. I was able to lift my arms for normal tasks (not up over my head) by the 3rd or 4th day. My recovery has been much easier than i expected.
🤗 Cindy
0 -
I was told no raising my arm over my head for 10 days and no lifting of more than a gallon of milk for 6 weeks. At 10 recheck was allowed full range of motion, and the physical therapist released me to start gently lifting weights at 3 weeks since I had a full range of motion. At 4 weeks, I'm using the arm normally, only watching how much I lift and not doing pushups on my toes.
0 -
Cindymb, I am postmenopausal and the tumor was grade 3; post surgery treatment was radiation followed by Tamoxifen -- no chemo. As is evident in the discussions on this site there is no one size (or treatment plan) that fits all so yours could differ.
0 -
11 days post surgery. Feeling good. Post surgical pathology came back negative -- 0/3. Clean margins. Some shooting pain 3-4x a day. But brief and not bad. I had full range of motion from day 1. Bending over was my trigger for pain
I am so very fortunate and grateful.
I'll start radiation last week of august.
0 -
Shooting pains are nerves that were cut and are now reconnecting--"testing the connection," so to speak.
0 -
My in-laws mean well but are overzealous in researching any medical diagnosis in the family. I'm having a lumpectomy next week and they are helping by watching my 4 and 6 yo. What is a good "white lie" I can tell my in-laws instead of telling them I have stage 1 BC?
0 -
You might not find this helpful, but I kind of feel you and your husband, together, need to tell them whatever you tell your parents, your siblings, and/or your best friend. As they are helping with the children, they are already a central part of your team.
Partial truths, for instance, calling your surgery an excisional biopsy to check out a peculiar lump, can raise more questions than they answer, setting off a whirlwind of angst and irrelevant questions and searches for non-pertinent answers about, for instance the competence of your medical team.
As the issue is "helpful" research, working on limiting the range of their helpfulness would be your main focus. I'd direct them to the main section of this website and whatever handouts your cancer center hands out. Perhaps you might bring one of them with you to at least one of your follow-up appointments. You can then pointedly ask your doctor for research guidelines that you, and they, can stick within.
You (even better--your husband) can also tell them directly that you need some time to process this new whammy and, for now, are researching like crazy and not yet ready to discuss anything with anyone.
0 -
TinaLPH, What Brookside said, especially the last paragraph! Obviously you are doing your own research ( or you wouldn't be here) and you aren't ready for long discussions with them. You cannot stop them from doing whatever research they want, but hopefully between you and your husband you can control the flow of "information".
You might also suggest the Koman foundation website to them.
Hang in there and as we say here, we've got you in our pocket next week.
0 -
Let them know that you have a great care team that is state-of-the-art when it comes to standard-of-care; that you appreciate them showing their love & concern for you by doing research, but (gently and non-judgmentally) that you too are staying on top of it and unless they uncover something with which your team agrees, you'll stick with what you know and can learn from reliable sources. And thank them for the child care--and offer to reciprocate by doing stuff for them should they ever need it, provided you're in condition to do so.
0 -
TinaLPH, navigating life with in-laws can be treacherous. Assume they mean well. I would tell them the truth. Be sure to set the boundaries of who you want to know. Set the boundaries about cancer discussions around your young children. If they provide you with articles or research, accept the information with a smile and a thank you, that you look forward to reading it. Then do whatever you want with it. It’s a win-win; they feel like they are being helpful and you are keeping the peace. Plus, you don’t have the pathology report back from your lumpectomy yet that will determine your course of treatment, so depending on chemo, rads, Tamoxifin...there might be days ahead that you will really need help with your kids and you don’t want a strained relationship with your in-laws.
Sending hugs and good thoughts for clean nodes and margins from your lumpectomy.
Blessings
0 -
Tina, I feel for you. When I had endometrial cancer and a thorough hysterectomy, I didn't even mention cancer to my mother until after the surgery. Her mother had died of uterine cancer in the 1930s, and predictably, her response was a combination of gruesome details about her mother and making me feel guilty because mine was caught early and I didn't suffer like her mother did. I just told her beforehand that I was having the hysterectomy but not why. Since your in-laws are Dr. Google types, you might have to be more open, but on YOUR terms. Something along the lines of "It's a small tumor that was caught early, and my care team is confident that I will be fine." And just saying this will help your outlook, too, as you go into surgery.
0 -
I feel a need to vent and don't have anywhere else to do it. My situation has gone from a fairly straightforward linear plan - lumpectomy (done July 11th), healing, rads - to a re-excision scheduled for August 8th. I had one grubby margin and a spot on the one node taken. The re-excision was scheduled far enough out to allow for the oncotype results to come back. I had a chest CT scan before the lx, which caught part of my kidney, showing something there. So my MO ordered an abdominal CT last week, and I have a honking huge cancerous tumor on my left kidney, almost 6 cm. I'm seeing a urologist Wednesday, and from the little I've read, there are a few ways to shrink it before removing it. I had my initial consultation with the RO last Friday, so I'm in the system there but with no idea of when I can start. Everything is dependent on the oncotype test and the re-excision, plus whatever the urologist needs to do. I hate hate hate that I have lost control over this situation and that I just get sent for various tests and appointments like a robot. Hell, I don't even know what doctor or medical staff to ask about the chronology of treatment at this point. AARRRGH!!! Add to this that I try to stay upbeat and calm for my DH, who tends to break down more easily than I do when faced with crap like this. I don't have any other support system, just one sister who always says the wrong thing ("At least you're lucky you don't have to deal with lawyers [Mom's estate]." REALLY??? And "Oh, I have a sympathetic boob pain" text while I'm in the waiting room at the MO's office last week. GET A DAMN MAMMOGRAM!!! She's 72 and hasn't had one because she thinks doctors are stupid and a mammogram might hurt. 🙄). I goofed when I made my FB announcement (just family and real-life friends) before lx in a rather flippant, humorous way, thinking this would be a fix & fry simple solution. Got one-time nice responses and not one word in the four weeks since, not even a "how are you feeling?" Two exceptions, one an ex-colleague who's been powering through Stage IV ovarian cancer and countless surgeries for almost ten years, and a new niece-in-law I've met TWICE who offered to come over to cook, clean, take me to appointments, etc. That woman is a keeper and my thrice-married nephew better realize it! Other than those, I am the Invisible Woman. Not sure if or how to give an update, or if I even want to.
End of overdue pity party. I would like advice on what person in the various doctors' offices can help with the logistical questions so I don't feel like I'm floundering through all this solo.
Whew, I needed that!
0 -
Well, normally rads starts when your surgeon pronounces your breast healed from surgery, but treating the kidney thing might throw a wrench in that particular works. I'm guessing your onc, in conversation with your other docs, will want to strategize which treatment for which issue, why, and when. I hope they can figure all this out for you very, very quickly. Meanwhile, as it was your onc who ordered the unfortunate testing, he's the one I'd start with. Until all your testing is completed, there may not be much he can tell you, but at least he can clarify what is happening now, and what (and when) the next step will be. I don't know about your onc, but mine limits his practice to breast cancer. Even so, he's the one I'd call first.
I'm so sorry this happened. Breast cancer, even Stage 1A breast cancer, is a huge hit. Dealing with two separate tumors is just plain unfair.
0 -
Alice, rant away! Have a tantrum!! Gees...this is so unfair. Can they tell from the CT Scan that the kidney tumor is indeed cancer? Do cancer cells light up on CT Scans like they do on a PET Scan?
As unbelievable as this is...two different cancers going on at the same time, imagine if you didn't have the Scan that found the kidney tumor.
Are you at a hospital with a cancer center? Do you have a nurse navigator? It would be ideal if you could have your BS, MO, and Urology Oncologist in the same room so they can prioritize treatment. Which cancer is most threatening to your life?
When I had my lumpectomy, my nodes came back clear but like you, I had two spots in the margins that were questionable. After a lot of discussion with my cancer team I opted for BMX. That decision plus an Oncotype Score of 14, took chemo and radiation off of the table. I could have gone with a single mastectomy but I didn't want the worry and fear of a recurrence in the other breast. Ido not regret the decision at all and I was very much against mastectomy at the beginning of my diagnosis.
You have a lot on your plate. I am sending ((hugs)) and prayers to you.
Please keep us posted💜.
0 -
Alice - reexcision on 8/8 is a much easier surgery than original LX. Mine was done in same incision, its a shorter surgery with less anesthesia, and faster recooperation.
You can rant here till the cows come home. We've all done it. But like someone else mentioned, finding the tumor on the kidney is kind of a blessing. You'd have never known.
I have a cousin who had stomach pains for a year. Finally Dr sent her for an abdominal CT scan. The young man doing the scan moved her too far, and saw sonething on her lung. He told her he was calling Dr office to get a script for lung scan. She was truly PO'd, keeping her waiting, etc. He got permission, did the scan, and found cancer.
Obviously it SUCKS, but not knowing it's there and growing is scary. I'd swear up a storm, scream & yell - vent like you said, and get it out of you.
You can do this, and get through whatever they throw at you. We're all here rooting for you!
0 -
Thank you Brookside and Bella. My MO is listed as a medical oncologist and hematologist and I think she deals with other issues besides BC. My PCP had referred me to that MO for another issue (high WBC and weight loss), but before that appointment, I had my mammogram and biopsy. The BS referred me to the same MO without knowing I was already planning to see her, so the focus of the initial appointment with the MO changed. All the doctors seem to communicate with each other as far as I know, but I feel like I'm in a holding pattern that is too random right now. I hope I can get some of the chronology straighter after seeing the urologist (who I don't think is an oncologist) Wednesday. From the little I've read, they try to shrink large kidney tumors before removing them, freezing or cutting off blood supply. Seems to be more of an annoying cancer than a scary one, but the timing really sucks because I don't know (yet) if the pre-treatments will throw the BC treatments off. He's right across the hall from my MO, and the MO's nurse walked me over there to set up the appointment. The MO scheduled a follow-up appointment with her for after the re-excision, but said she'd be talking to me before then. So I tend to trust that she's staying on top of things, but also has to wait for the oncotype score and urology findings first. It's a fog-filled maze right now.
I saw a Nurse Navigator listed in some doctor's office (can't remember which one), but I've never met one yet. Maybe I need to track her/him down to keep me pointed in the right direction. It's all part of a hospital complex with adjacent medical buildings, so even the offices not in the Breast Center are in the same complex, which is nice.
0
