Lumpectomy Lounge....let's talk!
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Rhyfelwr - you’re right. That fear will always be there. I know from now on every time I have a mammogram, my nerves will be rattled. Worse would be a more vicious cancer of bone, lung, brain, or liver cancer. Health is so unpredictable.
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Blair, I have an acquaintance who had a double MX after getting a lobular carcinoma diagnosis shortly before my diagnosis. I believe she did chemo and radiation, if that's what they do after MX, but I'm not sure. I just know she did everything she could do. She now has Stage IV, didn't respond to Ibrance.
So my point is just because you get an MX instead of lumpectomy, it's no guarantee or necessarily better. 0 -
Yes - I’ve read many articles that state that fact about mastectomies. Unfortunately everyone is at risk of future recurrence whether local or elsewhere. We just have to hope and pray we stay in the higher percentage of non recurrence for any stage. It’s a bit like playing Russian roulette. I’ve also read there’s just a small or slight increase of local recurrence for people who have had a lumpectomy, but that’s because there’s more breast tissue on ones chest for it to recur. I guess it’s a choice of whether or not one wants to save their breasts without silicone implants or going through a long reconstruction process. Some don’t care to do anything about reconstruction. It boils down to what would make you feel the most comfortable - a hard decision to make in a short time.
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Blair, you are so right about it's being a hard decision to make (mast. vs. lump.) in a short period of time. That's why I'm thankful I had chemo before surgery. I had enough time to make the right decision for me. My first gut reaction was to have a BMX but after living with my new reality for a while I realized I deeply wanted to keep my breasts if I could.
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Some of the sisters here are also talking about the incidence of cancer from having textured implants, which makes things even more complicated. I don't think it is possible to be 100% sure.
I am grateful to have won this battle. Carpe diem for now.
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Hi, all--hope all the folks having surgeries are doing well. I'm 1 month past lumpectomy, 2 weeks past port, All is healing well thus far.
I have my treatment plan--Paclitaxel and Herceptin for 12 weeks, Herceptin continuing thereafter every 3 weeks for a year, radiation to follow chemo after a short break, and then an AI (aromatase inhibitor--not sure which one yet) either during radiation or right after (the MO and RO have to discuss it at tumor board, and also, they of course want to see how well I do in the 12 weeks of chemo before making firm plans). I will go on Tuesdays; I was told I'd probably feel pretty good Tues and Weds, rough on Thurs and Fri, and improve over the weekends. I've gotten lots of literature to read, and I was pleased that the MO (medical oncologist) wanted my opinion on the proposed treatment. (He concurred that with my case, adriamycin would be a bit much, especially with cardiac considerations from the Herceptin, too). The physical therapist said my range of motion was fantastic--no cording or lymphadema (so, the exercises really helped me). I do have a small seroma, but the SO (surgical oncologist) took a peek and said it should resolve on its own, but to let her know if it changed at all.
New research on the AI was presented (and they gave me the citations to look over): Possibly 10 years instead of 5, if tolerable. But again, that's several months down the road from now. Nothing has to be decided for sure yet.
HR is still causing "issues," so the marvelous nurse navigator took them to task. (I had provided everything--they wanted more, more, more. I'm like, what, do you want me to lift my shirt?) They wanted "precise" descriptions of when I would have flareups or side effects. I'm not kidding--I got a copy of the forms, and that was the wording. NN wrote, "The patient is taking chemotherapy, which is inherently *unpredictable*. We cannot predict precisely when or if she may have complications or flareups." I gave her a high 5 today. My only fear now is HR retaliating in some way. Sad--it does not have to be this way. We should work together on this, employee and HR (I've been there for 16 years). The only thing I did question (with nn) was I'm listed for FMLA through Feb. 2019, and I hope to be able to return to work FT a few weeks after chemo is done, if all goes well. Of course we don't know ANYthing for sure, but that is the hope. I'm sure the doctor can adjust the paperwork if I am indeed ready to go back FT shortly after chemo.
It's ALL a crap shoot, like Blair said. There are days it freaks me out, and others when I am able to push it aside.
Dee
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Dee, you're right. It doesn't have to be this way. What is wrong with people?! I have four ladies who work for me. I own the company, but we all work together. If one of them was going through this, I would bend over backward to accommodate, just like they all had my back when I was going through it. I hope HR comes to its senses and gets this straightened out for you soon.
My only fear now is HR retaliating in some way. Sad--it does not have to be this way. We should work together on this, employee and HR (I've been there for 16 years). The only thing I did question (with nn) was I'm listed for FMLA through Feb. 2019, and I hope to be able to return to work FT a few weeks after chemo is done, if all goes well. Of course we don't know ANYthing for sure, but that is the hope. I'm sure the doctor can adjust the paperwork if I am indeed ready to go back FT shortly after chemo. It's ALL a crap shoot, like Blair said. There are days it freaks me out, and others when I am able to push it aside.
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Reading what most of you sweet, brave gals have been through, I am almost embarrassed to share my story; but maybe it will encourage someone to have regular mammograms. December 28 I had a biopsy - the angel that read my mammogram saw something 'different'. Turned out to be an area where cells "were gathering together" no tumor yet but cells were cancerous. (DCIS - Stage 0 Grade 1 - treated as Stage 1) Had lumpectomy Feb. 8 with sentinel lobe removal. All margins were clear and I went home that day. No radiation or chemo, but hormone blocker for 5 years (I am 71). My biggest problem is the lingering nerve pain (which reminds me every moment of every day that I had cancer in my body), but I cannot gripe because I got off so easily with the actual cancer. I sent a thank you card to the tech that found the area, he saved me! Good luck to you all and thank you for sharing.
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Hi TennesseeGal, just wanted to say that there’s absolutely no reason to feel embarrassed...every persons experience with cancer is gut wrenching...big or small. I think that’s what makes BCO such a close knit community. In all the thousands of posts I’ve read, even tension filled ones, I’ve never seen anything along the lines of “my cancer was worse than yours”. Personally I love seeing cases such as yours as it reinforces early detection and it’s good results.So forget being embarrassed and welcome to the sisterhood! As for your pain, have you checked this out with your oncologist or PCP?
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MO-Beth--Gosh, I hope so! It's just crazy. I'm not the only one, which is sad.
Tennessee Gal--that is wonderful news! That's very much how my first DCIS back in 2004 was treated--14 years going with no problems (my new diagnosis has zilch to do with that one). Love the idea of thanking the tech--I think it matters a lot.
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Tennessee Gal - When I had my mammogram in late September of 2016, I wish that I had gone in. Originally, they called to have me make an appointment. I called back and they said that they got a second doctor to look at "it" and decided against further tests altogether. Almost 8 months later I'm stage 2, grade 3 with lymph node larger than the main one. I finally got copies of that mammo and saw what looks (to me) like clear involvement of some sort, only a lot smaller, right where it supposedly started. I'd like to know who made that decision.
By the way, I didn't "feel" the lump in my underarm because it felt like fat and muscle to me and the lump wasn't as big at discovery; grew faster than the main one in the 54 days that passed by since I felt the lump in my breast to the time that chemo started in order to shrink them.
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TNgal, I think a lot of us feel the same as you. Maybe a little surprised that our treatments turned out to be not as bad as we thought they'd be. My sister had a very small DCIS that "only" required lumpectomy &rads. But the radiation burnt her up and she had a hard time with the AI. She also has rheumatoid arthritis, so she lives with constant pain. Although I ended up with chemo and a BMX, and complications, it's been smooth sailing since then. I'd never even know I was taking an AI. Everything could have been so much worse.
Know this: breast cancer is not a contest. Your experience is yours and no one else's. None of us is going to get a gold star for endurance, though we really should. Live long and prosper.
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Dee - Good luck with your HR issues. I hear you - this extra stress does not help in healing. I'm having my own work issues surrounding my treatment and the fear and uncertainty around that is almost worse than anything related to my cancer. I wish I could wave a magic wand for both of us and make any non-health related stress go away!
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so I am still waiting on biopsy results even though I was told it would be 1 to 2 days, which would have been Tuesday
. Each time I have tried to call my surgeon's nurse, she has been away from her desk, and I left VMs. Today they told me she had gone home for the day around 11. I finally asked if another nurse could look into the results. Another surgeon's nurse got on the phone and told me my results were in and that my surgeon would call me tomorrow. Of course im over analyzing everything like why couldn't she tell me my results when she gives results for another dr. My fam friend who works at a doctors office told me that it's protocol to not have another dr's nurse give results , but the anxiety is flowing and it's hard to be rational right now. I've gotten really pos feedback up until this point but im back into a state of terror there’s a part of me that’s scared that they are waiting for my surgeon to call to deliver bad news. Ughh 0 -
grl06c- waiting on results is the pits! I've had biopsies twice, one negative and one carcinoma. Both times it took me 5+ business days to have results. Stressful is an understatement. My best wishes to you for benign results. You will get through this, as you're stronger than you know!
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TNgal and everybody else: I NEVER KNEW that so many people are diagnosed with IDC without ever having found a lump until having come here. I learned that from the 'wire' biopsy/mammogram explanation discussion thing. And then I was discussing all this with my friend last week, who is a year ahead of me in diagnosis, who never looks anything up online. I mean, she just does whatever her doctor tells her. Anyway, we were talking about it and I brought it up and I asked her and it turns out that she had the wire biopsy marking/mammogram thing. That scares me to death because if I had had that kind of breast cancer and not the 'lump version' if I had relied on doing my annual mammograms (which I hadn't had for 15 years -- I know, shame on me!) I'd just probably BE DEAD right now. SO KEEP POSTING!
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I had "that kind of breast cancer:" never had any lumps (not even cysts or zits), had decades of biennial and then 5 years of annual mammos, each one dead-bang normal; so I was utterly unprepared for the report I got the very next day mentioning "focal asymmetry not present in prior mammograms." I was getting a mani-pedi, checking my mail on my iPad, feet soaking, when I saw the fateful e-mail directing me to my patient portal. Nobody had told me yet not to Google, so I immediately Googled "focal asymmetry." I knew right then & there that it means a spot in one breast that doesn't "mirror-image" (or show up at all) in the other, as opposed to the basically harmless "global asymmetry," which means one breast is bigger or differently shaped from the other and is easily ascertained just by looking at the chest, not needing any imaging. So I sort of knew--at least strongly suspected, although my mantra for three weeks--even after getting diagnostic imaging--was "don't go there yet..." I really knew when the radiologist, during my ultrasound, was the first practitioner who didn't try to reassure me; when she pointed out the blob and that it wouldn't compress when she squished it with the probe, I muttered, "oh shit," and she didn't tell me not to worry, but rather said "I recommend a biopsy."If I had taken the advice of some medical societies and kept to a biennial schedule rather than switching to annual mammos, I am sure that when my tumor was discovered it wouldn't have been Stage IA and might even have been a palpable lump.
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Same here, I always do annual mammo with diagnostic US. My ob/gyn never felt it in May 2017, I never felt it, even my breast surgeon never felt it. Still, it was there, US showed it. I too believe if I didn't get mammo & US yearly it would have been larger and quite possibly involved nodes.
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cindyNY, same exact scenario for me
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Tennessee, regarding the nerve pain, are you doing the stretching exercises recommended after lumpectomy? They made a world of difference for me. MSK has a good guide:
https://www.mskcc.org/cancer-care/patient-educatio...
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Had already scheduled my annual mammo appointment & at annual gyn visit including breast exam 7 days prior Gyn did not feel anything. A couple days after mammo, got the call for another mammo & ultrasound. Tumor "found" on ultrasound - tech left the room to get the Dr, with the screen up & displaying the "spot." Biopsy 2 days later & another 2 days before diagnosis delivered to me by Gyn. She referred me to breast surgeon, stating he is the Dr she would use if in my circumstance. Too late that day (Friday) to set the rest in motion - very tense & depressing weekend. At this point only shared the news with DH until we knew "the plan." Was too freaked out to look at the internet.
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I appreciate everyone’s support! Got my results today and they let me know both masses were benign as well as the rash over my lumps. Woooh! Time to enjoy a very large margarita. Again, thank you for all the kind words/ encouragement.
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Yay! You go, grl06c. Nothing like a Good News Friday.
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Grl06c - FANTASTIC!!
On being diagnosed. I had had yearly mammograms since I was 40. At 68 my breast was sore on the side and got my annual mammo at that time. Never did figure out why I was sore but my IDC was discovered and, whee! I was on my BC journey. It had been mentioned in my mammo reports in recent years that I had dense breasts but nothing was indicated that I should do something or have more tests - ever. Things are different now!
HUGS!
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grl06C... GREAT NEWS! Now get the hell outta here and I hope we never see you back here again!
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Like PontiacPeggy,I found a lump and when I got the mammogram, the tech said “You have really dense breast tissue. It would be hard to see things. From now on you should get 360 degree mammograms.” The lump turned out to be cancer and there was a second spot further in that I couldn’t feel.
No one in previous mammograms had EVER mentioned dense breast tissue or maybe the need for better screening. *SIGH*
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Grl, so glad that for you Good Friday turned out to be Great Friday!
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I was diagnosed at noon and saw my BS that afternoon - only because Irma (last year's hurricane) was headed toward us and it became the week from hell facing two monsters. I too have dense breasts and have never been good at detecting anything in my breasts, and was not good about it. Even after I was told I had the tumor - took a while to feel it.
Grl06c - what a relief you must feel! Great news!
Happy Easter holiday everyone!
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A year ago today I had my successful partial mastectomy - clean margins, clear nodes. And here is what has taken place since:
After allowing some time to pass for healing, I started my radiation treatments on May 22. I had 33 treatments with very few problems. My skin got red, of course, and I developed an itchy rash. The worst SE was the extreme fatigue, unlike any I had ever felt before. That subsided fairly quickly after the treatments ended.
I started on anastrozole a couple of weeks after radiation ended. I am tolerating it very well - I do have that foggy brain, have developed carpal tunnel syndrome in my left wrist and am experiencing pain in my left knee (all on the untreated side). I also have a chronic dry cough. My MO is sending me for chest and knee x-rays, which I’ll have done on Tuesday.
I went for my first post-treatment mammo and ultrasound at the end of January. I was called back for more images of the untreated breast. I was told the radiologist was sending me for a biopsy of a “cluster of microcalcifications.” But then I got a call a few days later, saying a second radiologist had looked at the images and determined I did not need a biopsy. I was left feeling confused and unsettled.
I had an appointment already scheduled with my RO. She thinks the first radiologist did not have an image to compare the new image to but the second one did. She thinks that second one saw that the cluster had already been there and so was just something to watch. She said she will send me for a bilateral mammo six months from this last mammo so they can make a new comparison.
All in all, I feel very well. I do experience an occasional ache in the treated breast but that goes away quickly.
I wish all my sisters good health, a Happy Passover and a Happy Easter!
MJ
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The wrap they placed on me after surgery is about to drive me over the edge. I can not wait till I can take it off and use my post-op bra. Hope everyone has a Happy Easter weekend.
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