Lumpectomy Lounge....let's talk!
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hello, I just had surgery for a small stage 1a spot which was removed and there was no node or margin involvement. I am waiting for my onco type test. I will have radiation. My question is this. I read that with the onco test 0 to 25 means no chemo however if you are under 50 years of age you do get chemo. I am 67. So it seems to me if you’re under 50 you are getting better health care. I don’t understand how they can be so sure that if you’re over 50 you don’t need chemo, why, because you’re old and they don’t care if you die? I don’t know if I trust this test.
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Great news, Isabel! All you should need is radiation--because your cancer was DCIS and hormone-receptor-neg, no chemo or endocrine therapy necessary and you can get on with the rest of your life. (From what I've read, HER2 status is irrelevant in DCIS, relevant only in invasive tumors).
Springdaisy, the reason an oncotype of 15 or higher warrants chemo in someone 50 or younger is that in those younger pre-or-peri-menopausal women, despite the path report & oncotype score <25, ER+ breast cancers tend to be more aggressive and chemo might confer a benefit. Not getting chemo at our ages (I'm 69, was 64 at diagnosis) with an oncotype score of 0-25 is NOT "worse" health care. In that case, chemo would do more harm than good, if it would even confer any benefit at all. Low-oncotype cancers tend to be more "indolent" (i.e., non-aggressive) the older you get after menopause, and chemo targets only rapidly-dividing cells. So NOT getting chemo at age 67 with a low-oncotype IS "better health care!"
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Hi all! Had my lumpectomy on 10/9 and had my follow-up today. All clear margins and no lymph node involvement! Yippee!! Radiology Oncologist appt Monday and MO appt at the end of the month. So happy to be moving forward.
My breast is still pretty tender and today when I took my bra off it hurt really bad. I'm assuming because my breasts are big and dnese (42DDD), I'll be wearing a bra for a while 24/7?
Did anyone experience a "sloshing" sound a few days later. Lol I could not believe that my boob was "sloshing" because of the fluid build up. I kept making my husband listen to it lol. All in all today was a good day and I'm happy I decided to do lumpectomy!
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Spring Daisy, I believe the reason they typically do not recommend chemo for lower oncotype scores for older women is our cancers tend to be less aggressive. In general, when younger women get breast cancer it tends to be much more aggressive and so requires more aggressive treatment. Also OncoType takes into consideration the stage, grade, ER, PR, and HER2 status, as well as genomic response in the tumor.
As an example, I am 59, my OncoType was 11, and no chemo recommended. My MO explained that because I was 100% ER+ and 90% PR+, HER2 neg, that chemo is literally not very effective on my type of tumor. It isn't just that they don't recommend it, it is that it is unlikely to work better than Endocrine therapy for me personally. I really Did Not want to do hormone therapy, I was actually preferring to do chemo for a few months and be done with it, but alas, not an option for me. Bring on the Letrozole.
But to answer your original question, no they are not letting us oldies "just die", if your tumor was a high grade and tested that it would be responsive to chemo, the test would still recommend that for you. It sounds like your tumor was small, and early stage, so hopefully the OncoType will come back with a very good prognosis for you. Best wishes for you for a quick recovery.
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crsharper, I wore a bra of some sort 24/7 for 5 years post-op--my breasts were 38-40H/I (now that I've lost weight, 36I/34J--and the R is a cup and a half smaller than the L). At night, I found a front-close leisure bra to be a comfort overnight, and with a "Swell Spot" pad tucked in it actually helped shrink the seroma. And that's exactly what that "sloshing" is. I now wear a night bra (switched to ThirdLove back-close leisure bra or Puma step-in sports bra) only when I'm wearing knitted shorty PJs or knitted nightshirts, so that my silhouette looks even. (You can't really tell when I'm wearing scrubs or fleece PJs).
Not everyone has the same experience with aromatase inhibitors, but the only major side effects I've had with Letrozole (going on 5 yrs. now) were initial night sweats, elevated cholesterol & glucose and lowered metabolism--but a low-carb diet normalized my a1c, erased the weight gain and then some. Hair was already thinning at my age when diagnosed, so hard to pin that on Letrozole. Chemo would have been shorter but much harder on the body with perhaps some lasting effects.
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crsharper & Isabel - congrats!
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Thanks so much for the congrats and good wishes! Now it's on to radiation. Crsharper, I have very small breasts but still wearing a sports bra at night and regular one in the daytime--pain and tenderness seems to come and go, but especially in the armpit from the sentinel node removal. Any little thing pulls or puts pressure on it--pushing open a heavy door, for example--and it's hard to remember not to exert. No sloshing though.
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Remember not to lift anything heavier than a gallon of milk with the arm on that side, at least not for a couple of weeks. I still insist my grocery bags not get filled too full, lest I exceed weight limits even 5+ yrs out (my eye surgery was only 2 mos. ago). Push doors open with the other arm, or your shoulder or better yet, hip. The sentinel node site is almost always more of an annoyance, and for longer, than the breast incision site. When you do radiation, remember no deodorant/antiperspirant--cornstarch in a sock, patted gently, works fine--but not right before each treatment. You should go in with totally clean bare breasts & armpits--I showered before leaving for each session. Don't shave, either--if you must, use an electric. I didn't sweat or grow hair from that 'pit for over a year anyway.
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Hello ladies! I am 3 weeks post lumpectomy and having short, sharp pains every once in awhile. Anyone else? I'm not sure if it's nerve pain, pain from absorbing the fluid or something else. No fever, but the breast is warm to the touch and just ever so slight pink. Thinking I may call the oncall doc today....hope everyone is healing well
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JujuMartin, Yup. Most likely nerves. And usually it is from the lymph node removal. That was my most troublesome part of my surgery and it seems to be for many of us. However, since your breast is warm to the touch, YOU DEFINITELY WANT TO CALL THE DOCTOR!! That sounds like an infection. The nerve pain and warm breast are likely (but I'm no doctor) not related. HUGS!!
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I would agree with Peggy on this one. But I will tell you that your operated breast will likely remain warmer and pinker than the other for quite a while, because of an inflammatory reaction to the trauma of surgery, not necessarily infection. If it turns red or gets hot, then it's time to worry, Call the surgeon anyway to ease your mind. The short sharp pains are typical for post-lumpectomy and post-SNB, and my surgeon's NP told me in advance not to be surprised should I get them: nerves were cut, and when the ends start reconnecting (sooner than one would expect) they announce the "closure of that circuit" with short sharp pains, even "shocky" zaps.
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thank you ladies! I called the on call doc and we both feel it is a normal part of the healing process. I will keep an eye on it overnight and they will see me Tomorrow if anything changes.
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Congrats to you ladies who have just come through surgery. Don't forget to do your arm excerises. I wore a bra or camasole for several months after surgery 24/7 helped greatly
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Has anyone had a mammogram since their lumpectomy? How was it? My surgeon wants me to get a new baseline mammo. It is scheduled for next Tuesday. I am a bit terrified of the lumpectomy side. It is already sore and is uncomfortable when I do the breast massage my RO told me to do. I can't even imagine the pain of a diagnostic mammo. Oh, she also ordered an U/S and I suspect that won't be comfortable either. My BS told me to take tylenol ahead of it to help with the pain. But that kind of feels like putting a bandaid on an amputation...too little too late.
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My first mammogram was about 9 months post-Lx. It was fine but I wasn't sore either. Sending HUGS!!
HUGS!
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cm2020 - My first post lumpectomy mammogram was 12.5 months after surgery. Although I was worried about it, for me, it was only slightly worse than normal. Seems like it could be a bit "early" for your mammo, considering when your lumpectomy & radiation were completed. However, these cancer teams and our cancers are all different. In your pocket!
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PontiacPeggy...Thank you for the hugs. Oh how I dread it.
CeliaC...I thought it was early too. I questioned my BS and she said that they like to have a new baseline around 6 months after surgery because my breast has changed due to surgery and radiation. This will be the mammo they compare future mammos against, if I understand her correctly. She said after this one I won't need another one for a year and my MO will be ordering all future ones. Like you said, everyone's treatment team does things slightly different. I hope my experience is like yours and it isn't as bad as I fear. She said there is only a very very slight chance of anything showing up on this one so I am not worried about what it may show, just the possible incredible pain on the cancer side. Thank you for the support. I really appreciate it.
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Jujumartin, I had to have second surgery - Second time surgeon told me he took out as much material as he could without doing a full mastectomy because he didn't want to have to come back - Of course they have since changed the protocol on redoing a lumpectomy (as long as no cancer is in the ink you are considered fine - it used to be 4mm from the ink - I was 3mm) No problems but I have a notable smaller breast on the right side - (but it wasn't a big enough deal to do any type of reconstructions - I was done having surgeries) and a ridge of scar tissue - But other than that okay -
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kkuziel, I see you are in Michigan too. I am in southeast Michigan, tiny town called Chelsea. My second opinion surgeon recommends a mastectomy. I'm unsure yet about reconstruction or prosthetic. I meet with a plastic surgeon soon and will hear what he has to say. Hope you are well. Juli
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JujuMartin, I'm from Pontiac, now living in Spokane, Washington. Did you have a mastectomy? Or stay with a lumpectomy? So many decisions to make when you know nothing. It is so hard.
HUGS!
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PontiacPeggy, I had my lumpectomy Oct 2, but an MRI on Oct 12, showed more than one + area. New surgeon ( second opinion) suggests a mastectomy after chemo is done. I'm thinking I will do that. Surgery took out a 6cm area, second surgery will have to take more to get those new areas. Mastectomy makes most sense. I have an MRI of my back next week. MO thinks it most likely degenerative Disease ( runs in my family). But I feel so much more confident starting treatment! Hope you are well. Do you miss Michigan summers? Juli
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JujuMartin, it sounds like you have a plan that you are comfortable with - that's very important. I do miss the Michigan summers because I like the humidity. Spokane is quite dry. On the few summer days when we have humidity I just stand and breathe it in and sigh!
Good luck with chemo and the rest of your treatments!
HUGS!
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My Dr has me scheduled for my first mammogram in 6 months also. She has me every 6 months for the first 5 years.
Jujumartin I’ve been having some sharp pains too. They kind of come and go. But overall I feel like I’m healing nicely!
I have my MO appt on Friday and ready to get my Oncotype score so I can get moving with radiation. I’m really wanting to be done this year for insurance purposes!
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Juju, I have musician friends in Chelsea (no, not Jeff Daniels--I wish). My singing partner & I have played at Zouzou's--is it still there? Our duo is on hold for the duration of the pandemic, as my singing partner lives in Madison, WI and it's not safe for either of us to travel to the other's home to record a livestream together. Due to echo & delay issues a Zoom concert would be limited to our swapping songs--but it's the harmonies, counterpoint, instrumental duets and banter that our fans want to see. I may do a solo livestream, though--or if it warms up enough to be outdoors, a concert on my deck, with neighbors socially-distanced on my lawn or the yards on either side. Meanwhile, "back at the bc ranch," sounds as if what's turning out to be de facto neoadjuvant chemo may shrink your remaining tumors enough that a "cleanup" re-excision rather than MX may be possible. Fingers crossed!
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chiSandy, yes Zou Zou's is still in town, in fact they have expanded their space. It's a wonderful spot for live music! Music fills my soul! Sounds like it does for you as well. How fun if one day in the future you sing and I come to watch! Would love that. Thanks for your encouraging words and advice for us newbies. It does help. I feel confident today! And the sun is shining. Let's all make this a beautiful day
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I had lumpectomy and 2 surgeries in April for IDC; the first surgery had unclear margins so my BS went back in for re-excision (I was warned it was possible) to remove more tissue, as well as some sentinel lymph nodes. For the one that inquired about shooting pains after surgery, this is completely normal, "radiating muscle spasms". It's a sign of trauma...and healing. I occasionally have them now 6 mos later. Had 20 radiation treatments, hopefully on the other side of this. Next mammogram (right and left) in early 2021. I'm on Tamoxifen....I'm looking for feedback on the side effects. I have the worst night sweats and hot flashes, which I hardly had with menopause so it's AWFUL. It disrupts my sleep, and that's not healthy. The alterntive is another med that affects joints and bone density - not good! I'm strongly considering something alternative. I'm otherwise a very healthy 59 yr old woman, work out a lot, cycle,eat healthy. I incorporate healthy supplements like green tea every day and looking at others. Please, if you have thoughts I'm open to feedback.
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crsharper...Wow...a mammo every 6 months for 5 years? I haven't heard of that before. It always amazes me how different our teams are and how things vary for each of us. Good luck Friday. I hope your oncotype score is nice and low. Yes, I completely understand wanting to finish treatment this year. Many times this year I have been thankful that it all ended up being completed in one calendar year for insurance purposes too.
I also get those sharp pains. Sometimes I go very long periods of time without them, and then seem to get them regularly for a while. The pain/tenderness also seems to fluctuate. Right now it is a bit worse, I hope it goes away at least a little bit before my mammo Tuesday.
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pjfaille, I am sorry you are experiencing so many side effects. Do you have a Naturopathic Doctor (ND)? I have one as part of my team (surgeon, oncologist, radiologist, ND, family doctor) and, when I ask, the ND suggests supplements. So ask yourself: What does Tamoxifen do? (suppress hormone production, especially estrogen?) Then ask yourself: Is there something else that does what Tamoxifen does? Is there research to show it is effective? Then ask your ND these same questions.
You'll have to decide for yourself. When my oncologist said I had to take Anastrozole (I'm menopausal) and I read up on the side effects, I told the oncologist my multiple back injuries and ongoing back pain plus degenerative arthritis in the spine were contraindicated with Anastrozole. The oncologist told me to take Effexor with the Anastrozole; I learned Effexor was contraindicated with a prescription I already take for back issues. Then I consulted with the ND on my team, who had some suggestions. When I next saw the oncologist and shared my new supplements list, the oncologist loosened up and suggested adding Black Cohosh to the list.
Best wishes with your journey!
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Tamoxifen does not suppress estrogen production: instead, it blocks tumor cells' estrogen receptors access to the estrogen our bodies make (yes, even without functioning ovaries). The other class of drug is aromatase inhibitors, aka AIs (anastrozole, letrozole, exemestane). What they do is suppress estrogen production by inactivating the enzyme aromatase (made by the liver), which is the catalyst for converting the androgens our adrenals and fat cells make into estrogen. Yes, AIs do have the unfortunate side effect of weakening bones--but there are bone-building drugs available to combat that. Both Tamoxifen & AIs can cause joint pain, weight gain, hot flashes, night sweats--but there are certain antidepressants you can't take if on Tamoxifen but can if you're on an AI. (I take Wellbutrin, so Tamoxifen is a no-no for me). I've been on letrozole for nearly 5 years--ideally, my MO would like me to be on it for 7, but we'll do another DEXAScan at 6 years; if my osteopenia worsens (I finished my 6 seminnual Prolia shots a year ago--on Prolia, my osteopenia improved from its pre-cancer baseline), then we may stop the endocrine therapy. Most of the survival benefit comes after 3 years.
Exercise caution when opting for "alternative" therapies--they should be complementary, not instead of conventional standard-of-care. Look for an "integrative" MO if you want to try them.
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New to this forum. Diagnosed Sept 1st with IDC & had my lumpectomy 10/30/2020 along with intraoperative radiation. Thought I was on the road to recovery until this afternoon when I got the wonderful good news/bad news telephone call from my surgeon with the pathology report. Good news: sentinel node is clear, no cancer spread & letrozole has slowed the cancer growth in 30 days from 7% to 1%. The bad: tumor margins were NOT clear & they want to go back in & do more surgery. Just trying to get a feel for how often folks here have experienced re-excisions .
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