Lumpectomy Lounge....let's talk!
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Thank you, PontiacPeggy! I asked my BS about PT and she said, "You won't need PT." But that was before the Oct. surgery.
I'll wait until Fall, as you suggest, before asking again. Or maybe I'll ask my MD at my September checkup there.
Hugs back to you!
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CherokeeLady, You may find that your PCP is more sympathetic. And you definitely want a therapist who specializes in breast cancer patients. That is the key. You do want at least a year if not more to pass from your surgery before doing therapy unless you are miserable. I think, without KNOWING, that it takes some time for things to settle into their new normal. If the new normal doesn't work then PT could help.
HUGS!
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CherokeeLady, ask for a referral to a lymphedema O.T. Even if it turns out that's not what you have, the massage they do is wonderful, as well as the gentle stretches.
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Peggy congratulations on 6 years out! Will be thinking of you tomorrow for your mammogram. For me nerve wracking prior to BC and nerve wracking after.
FWIW i had a lymphedema consult after persistent rash and swelling. Ended up being nothing of concern but was so glad I went. She could not have been more gentle and helpful. And also provided a good baseline in case things changed.
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congrats Peggy I hope you never se him again either.
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PontiacPeggy, I read how you had left side pain. I had lumpectomy followed by 4 weeks radiation finished in March. Last week I saw my oncologist and told him that removal area is starting to hurt. He told me that’s normal. Under my arm, I can’t bring my arm as far back as my right. When lying down or even as much as my arm moves or the site I can feel soreness and a solid mass. If I didn’t know better I would think I had a lump. I am guessing it’s scar tissue. In two weeks I see my surgeon, maybe I will get some answers there. Under my arm is so tender and muscular sore. Is this what you were experiencing? I know it can’t grow back this fast but this sure is becoming a problem.
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That sore lump under your arm is an "axillary seroma," from where your sentinel nodes were removed for biopsy. Even though they take a larger chunk of tissue out of the breast, most women find the axillary seroma to be far more bothersome. Seromas happen when part of an internal organ (including mammary tissue and armpit lymph nodes) is removed and the body--since Nature abhors a vacuum--fills in the empty space with "serous" fluid (watery, tinged slightly with blood). By the time mine was the size of a tangerine, it burst 3 wks post-op, so the surgeon sutured it closed (the weight of my breast pulled on the steri-strips and kept the incision from closing). It shrank steadily down to first a lime, then a walnut, then a grape before disappearing.
My mammary (breast tumor bed) seroma was much larger, but not really painful. At one point it was almost 20cm, bulging out the side--but it finally shrank back down to about 5cm last fall; and the scar tissue surrounding it had hardened. At first I didn't notice--but then after I had lost quite a bit of weight I felt the lump and panicked. Took 2 ultrasounds and a mammogram to reveal it was the shrunken remains of the mammary seroma and scar tissue. Took a load off my mind, for sure. Next mammo isn't due till this fall--and it'll be a regular bilateral screening mammo. My surgeon finally dismissed me from her care; I suspect my final MO visit will be in August.
And my Bar Show castmate (who is also a Fed. prosecutor) who had a bilateral mastectomy (she has the Chek2 mutation) got great news: OncotypeDX is 6. Her MO says not only no chemo but also no radiation--and maybe not even endocrine therapy. Now all she has to do is hope those pesky drains can come out soon.
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PontiacPeggy- congrats on never seeing MO again! And good luck with mammo today.
Has anyone been told not to have an IV in the arm where axillary nodes were removed? I'm scheduled for wrist surgery, De Quervain's, on my right. I've had my surgical nurse call, and I mentioned no BP done on left arm. Nurse said no problem, they can do my leg. Then she mentioned they wouldn't use my arm for IV, they'd use my foot. I'm 2.5 years out, and never had lymphedema. Nurse seemed to believe that no BP on that arm goes along with no IV. Could be I was told that and don't remember. As far as no BP on that arm, I think I learned it here!
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Congratulations to Peggy!
CherokeeLady- my BS referred me to a lymphadema therapist right after surgery. She was great although I only had 5 sessions. Two things. One, your insurance may not pay unless you have actually been diagnosed with lymphadema. Mine didn't. And also you may have something come up (lymphadema or radiation reaction) later down the road. So be prepared and keep doing the exercises the therapist gives you. I didn't and now have a hard, painful lumpy breast that my BS thinks is either a delayed radiation reaction or lymphadema. I did not keep up my exercises like I should have. I hope it's nothing major for you
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I am 14 months post lumpectomy, finished chemo in October 2019 and radiation in December 2019 and now am on Letrozole . My breast had been red and warm since the surgery. I had a seroma under that arm and one at the surgery site, which was called lymphedema until January of this year. An OT caught it. Drains put in and finally resolved. Breast is very hard, red and shaped strange. No shooting pains, but very sore to touch and when I lay down. Surgeon says it's from radiation and had hardened the fat tissue and "hopefully " will get better. How long does this go on? Anybody else have these issues? Getting discouraged.
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Thanks, everybody, for the helpful comments! PontiacPeggy, I'm thinking of you today re your mammo.
Virtual hugs to all!
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Abbidoodle- that all sounds similar to what I’m going through now. 13 months post lumpectomy and about 8 post radiation.
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MomGr5, I didn't really have pain. More like aches or soreness. Annoying. I really didn't notice it until probably 1-1/2 or 2 years after my Lx when my life settled down (hubby unwell, in a nursing home, dying and moving across the country). I wasn't really sure all of these things were BC related but I thought they were. I'm on Medicare and my PT was paid for completely. Worth it - I'd have paid.
Keep doing gentle exercises to stretch everything on your "bad" side. I never had a problem with range of motion so not much help, sorry.
CindyNY, I'm not sure if I was ever told no injections or IVs or BP on my left arm or I read it here or in Dr Love's Breast Book. But with 5 lymph nodes removed, I have followed that advice 100%. Of course, I haven't had to have surgery either. I know that with that many nodes removed I'm at a higher risk for lymphedema. My MO gave me a stern, Dutch Uncle lecture (which he never does) that if I notice ANY change to immediately contact him - it could be a major problem. I prefer to avoid anything that could contribute to it. You don't mention how many nodes were removed. Perhaps search the vast library here and see what the literature says.
Thank you to everyone for the well wishes today.
HUGS!
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What do your docs say about it?
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I just wanted to say how much I appreciate all of you posting your experiences words of wisdom. It is just very helpful. I start radiation next week and your experiences with it are very different from what I expected. It is good to know what could happen. As for my lumpectomy, I have noticed that even though I am almost 2 months out, the area where the sentinel nodes (2) were removed is just as tender to lay on as it was to begin with. In some ways I think it is worse now. However, when the drs examine the area and press it isn't very tender at all. I also thought I was clear from a seroma forming but it sounds like I am not.
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Cindy, my normal instructions are no needles, IVs or BP cuffs on my R arm (I had 4 nodes removed). I even have that engraved on my medical alert bracelets. But in July 2018, I had to have surgery on my L arm: wrist cartilage debridement, tiny screw inserted into a hairline fracture on the back of my hand, and ulnar shortening osteotomy (to prevent further erosion of the cartilage). Before I let the anesthesiologist do diddly-squat, I called my lymphedema specialist (the nation's foremost expert on LE). He said the surgery would be short enough, w/o tourniquet on the R arm, that using my R arm for an IV would be fine, and that they could use my thigh for BP. Came through just fine. My LE never returned.
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Sandy, sounds like the keys were: short and no tourniquet. I'll keep that in mind. Good to know!
HUGS!
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Thank you all - surgery is supposed to take 25 minutes. The nurse said to discuss with the anesthesiologist on surgery day. I'm hoping to use my arm vs foot.
Peggy - I too had 5 nodes removed; BS said they were clumped together so she took them all. I've never had lymphedema.
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CindyNY, When I changed MOs because I moved to Spokane, my new MO said that just because the BS meant to take ONLY 3 nodes - that doesn't count. She took 5 and that's a Level 1 Axillary Dissection and thus will always be at a greater risk for lymphedema and this was 2 years post-LX. (My BS and MO in Michigan never said a word about this which really makes me mad and glad that I found someone who tells me the truth). I haven't had any sign of it in 6 years but I gather the risk never goes away. Listen to ChiSandy, she is a great, informed, reliable source of information. And good luck with your surgery.
HUGS!
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I had 1 sentinel node removed. Left arm range of motion was pretty bad post surgery & even worse after radiation. Had to have the rad techs place my arm in the position require for rads as no way could I move it in that manner. Was referred for PT, who was a lymphemdema specialist. Exercise & massage sessions helped restore much better range of motion. I was also fitted for and wore a lymphedema sleeve for a long flight to SF as I wanted to do whatever I could to prevent lymphedema. So far, so good. Sentinel node scar is still sometimes tender, ouchy, depending on certain movements and especially after mammogram or breast exam. It is true that the risk never goes away.
cm2020 - I had 20 radiation sessions, the last 4 being directed to the tumor bed. Hope you have been given some instructions on protecting your skin during rads, eating well (lots of protein), etc. I used Miaderm lotion 4x a day and my skin help up very well.
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I have started and deleted this post at least 5 times. I've been reading all the boards for the past week and learning as much as I can. I'm obviously a newbie and today I have just been an absolute wreck. I met with my BS yesterday and I have to make the choice between lumpectomy and mastectomy by Monday. I am 99% sure I am going with lumpectomy due to the projected size of the tumors. (I have 2), but I am scared to death of the radiation. I have implants that are about 18 years old. No issues with them at all. I'm scared of what the radiation will do to them and me. I know I ultimately want to do everything I can to get rid of the cancer and not have it come back, but I know you all will understand when I say I also don't want to look in the mirror everyday afterward and cry because of how I look. I guess right now in a nutshell, I'm just plain scared.
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BossBabe, I didn't, don't have implants so can't speak to that but I had no problem with radiation. I did not notice any change in my breast from it. You are very wise to choose having a lumpectomy. It is usually best to start with the minimal amount of surgery. Then you will still have your breast. Even women who eventually wound up having to have a mastectomy after one or two lumpectomies were glad that they went with the least invasive surgery first.
Has your BS said that you will be retaining the implant on your surgery side?
We all are scared to death when we receive our diagnosis. Cancer is a hard word to wrap our minds around. Your BS will do her best to make sure you look good. You might want to read Dr Susan Love's The Breast Book. It will give you tons of information and I know it helped me learn what I didn't know (which was everything).
Good luck with whatever you decide but I vote for going with a Lumpectomy (and BTW, having a mastectomy does not mean that you necessarily won't have radiation).
HUGS!
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Wish I could help you, but I didn't get reconstruction--so I have no idea how radiation would affect implants. I chose lumpectomy because I have large breasts and the tumor was small and off to the side. What does your BS say about radiation and your implants? Are your tumors bilateral or only in one breast? What type of implants? How old are you? (Over 65, with a favorable tumor profile and negative nodes, these days some consider radiation optional even with lumpectomy). The radiation I had, at 64, was the 16-treatment hypofractionated "Canadian protocol," targeted only to the tumor "bed." Depending on your tumors' locations, the beam may miss the implants. Latest research finds that for Stage IA or DCIS, the short protocol is just as effective as the standard 33 treatments (28 plus 5 boosts). I had a little redness but no itching, burning or broken skin. The side of my breast (location of the tumor bed, where a seroma had formed even before radiation) did swell a bit, making that breast temporarily the larger one. So I had to go up a cup size.
Do you want to continue needing a bra or go flat? That is also a consideration.
Please go to your profile page and post your estimated stage, grade, size and type of tumors (i.e., whether invasive or in situ, and ductal or. lobular; estrogen/progesterone receptor and HER2 status). Even if you have only the biopsy pathology and not a surgical final path report, your biopsy report will mention all these factors (official "stage" will depend on the surgical findings--actual tumor size and number of positive lymph nodes, if any, from a sentinel node biopsy). We need all that info before we can give you informed advice.
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CindyNY, my BS & MO specifically told me not to have BPIV in my left arm as it increases my chance of lymphedema even with only 2 nodes removed. I’m part of a study for IORT the NP who collects data at each of my 6 month checks measures my arm circumference to ensure I’m not developing lymphedema. No issues at this point. All 3 have said the risk is lessened at 3 yrs and I can have BP/IV in my left arm again if I choose to, my decision. I hope this helps.
Stay safe & healthy as the country/states open up!
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CeliaC. Thank you. Yes, I have instructions for skin care and have already gotten cream and aloe vera to use. Plus the body wash recommended. I will keep in mind your recommendation in case things get beyond what my stuff can handle.
Thank you to the person suggesting the Breast Care book. I ordered it today. It is not one I have seen recommended before but looks very good. I am learning so much from this thread (actually the whole site) and appreciate all of the wisdom you ladies are sharing.
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Stellawt57. Thank you for the info on lymphedema with only 2 nodes removed. My BS said it wasn't likely and didn't give me any specific instructions. I have been careful (thankfully) and not allowed my BP or blood draws from that arm and will continue to be vigilant about it.
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PontiacPegg and ChiSandy, Thank you so much for the advice and the book recommendation! I just got the Breast Cancer Husband for my hubby, but I'm reading it too. It's nice to hear from some people that do not have radiation horror stories. I had filled out my profile the best I could and thought I had made it public. Can you all see it on your side? I am 45 with saline implants with 2 tumors on the left breast only about a 1cm apart. One is ILC 1cm and the other is IDC 2cm. BS said due to size it would probably be a stage 2 but it's acting like a stage 1.
My goal has been to retain my implants as my BS said that he should be able to do the lumpectomy without harming them. I was able to get in touch with my original PS and he said that radiation and implants do not like each other. There's is a better risk of capsular contracture and rupture. I may have that one removed on that side for radiation?? I set up another appointment with a PS to talk with them further. Either way, on Monday I have to make my appointment for the surgery. I guess I can figure out radiation later. I just hate having all these different scenarios in front of me and have no clue what the best route is.
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Temporary removal and either replacement of that implant or autologous reconstruction ("flap" or fat transfer) sounds like a wise course of action. Know that adjuvant radiation is becoming more and more debatable these days when it comes to node-negative Luminal A-type Stage I or early II IDC or ILC, especially for Grade 1 tumors &/or postmenopausal women. A friend (age 51) just had a bilateral mastectomy with the same tumor profile--and her surgeon & MO recommended against both radiation & chemo--and left the decision about endocrine therapy up to her.
How inconvenient would a prosthesis be until your breast "settles down" after radiation (or mastectomy without radiation)? Is your BS an "oncoplastic" surgeon (who specializes in breast cancer surgery with an emphasis on "cosmesis," or optimal appearance)? If not, can you demand that one scrub in? If you choose a unilateral mastectomy, the implant can be reimplanted or a tissue expander inserted at the close of surgery--especially skin-saving. (Caveat is that if there are more than 3 positive nodes you may still be recommended radiation even with a mastectomy. It's rare but not unheard of). If you elect lumpectomy, you can always leave the implant intact until you decide what kind of radiation you will get. With internal catheter, intraoperative, or external targeted radiation your implant might be outside the "field" of radiation. I would suggest a consult with an RO (radiation oncologist) too. Radiation, unless it's intraoperative (IORT, done as part of the lumpectomy), is usually delayed until you've healed from surgery--on average, 6 weeks.
You can always go back later and remove a breast that had only a lumpectomy, but a mastectomy is irreversible--only reconstructable.
I'd also recommend Dr. Elisa Port's New Generation Breast Cancer Book, which has been revised several times since I read it. Between Drs. Love & Port (who is at Mt. Sinai NY, where she founded the Dubin Breast Cancer Center), you will have the best and latest guidance from the two top breast cancer surgeons in the country.
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Hi all, I'm 3 months post op of partial mastectomy right breast, with reconstruction of both to having matching girls. Doing well. Radiation did shrink the right breast some and I have a dimple where tumor was housed and tissue removed to check margins. Thank god all neg. NED. I also had a few nodes removed. My question out there has any one had internal sutures come to surface. I've been clipping them off. Plastic surgeon this will soon stop. Doing well. Bake to playing golf, kayaking, and such. I do notice after alot of exercise area is sore. I make sure I do my arm weights daily to prevent stiffness. Unable to wear an underwire bra due to pressing on incisional site. Buy being that I can now by bras off rack got some really cute ones that done lay against incisional area. I feel blessed. I didn't have to have implants, I had large breast and had enough of my own tissue for reconstruction. So far very please. I always wanted a breast reduction but never in million years did I think I would get breast cancer to get it down. I have triple neg breast cancer it was stage 3, As of now considered No Evidence of Disease. (NED)
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DogMomRunner - what do your docs say about it? I recently had some foot surgery and dealt with several nurses who all seemed surprised when they saw my breast. I'm also getting my first mammogram next Friday and I can't imagine anything pushing or pulling on that side!
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