Lumpectomy Lounge....let's talk!
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nonomimi5- I'm small breasted. My left rads breast is perkier, it's the first thing I noticed after rads. But its not so much that I want to fix the right to match it. If you want yours to match, go for it!
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thanks guys. So does your insurance pay for lifting the healthy breast?
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nonomimi5 - my cancer side (lumpectomy, re-excision, and rads) is still larger and perkier than my non cancer side over 2.5 years later. My BS says I have "impressive edema". At each appointment we talk about possible surgery to non bc breast to achieve symmetry. He says it can take a bit of paperwork to get approved by insurance but eventually it would be approved.
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ChiSandy oh Lordy - one cannot make this these things up. First congrats! on terrific news about the mamo. But really?? I cannot imagine your face when you found yourself face down (pardon the pun). And the wedding, what a story! But i am glad you getting a hang on things and you are able to do the important things. Years ago, i had 3rd degree burns to my right hand, i was being fancy and carrying a tray with scolding water to my guests,anyway it was total misery. But i learned to do things with my left hand, the kids were young, the cooking, e/t, and yes the toilet, all important stuff. And so sorry for not being able to do the last gig.
So when is this visit with surgeon scheduled? You need time to recover, when you starting the new season?
Patsy love your advice. I'll check out how doable these recipes are. Thank you.
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twiggy. Thank you. Please keep us posted
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First I have to get past my hand/arm ortho surgeon--I will find out after new x-rays tomorrow (and hopefully, no more torture-chamber prone arm/hand MRIs) just what is fractured, whether I can get a cortisone shot in my TFCC (not the tendon) this time, and whether I'll need arthroscopic surgery to truly see what's going on in my L wrist and clean up what's amiss. I would probably schedule the L reduction lift once my upper extremities & appendages have healed as much as they're going too--at my age it's no longer a given that things that break can be fixed & restored to their previous condition. If my music-playing career is not over, I will have to schedule both my gigs and breast lift carefully--sort of like juggling chainsaws.
Medicare covers all surgery necessary to restore symmetry after a mastectomy or lumpectomy. My previous group insurance would have, also. Not sure whether that holds true for other insurance--I think it's a Federal law (for now) that it must be covered, as it is a restorative and not a purely cosmetic surgery.
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Gd Morning Ladies,
Have any of you ladies had to do regular Scans (PET, MRI, CT ) after your surgery or treatment? I was asked that but I never had to do them, Not sure whether it's cause I just had radiation not chemo, and my margins were clean first go around. Can someone give insight on that. Are scans done mainly on women who do chemo more so then those who do radiation?
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I don’t know the exact protocol for getting a PET Scan. I think if the cancer has spread to the lymph nodes then it may be wise to have a PET SCAN.
I had clean nodes, BMX with DIEP Reconstruction. I did not have chemo or rads due to my Oncotype Score. Sounds easy, right? Except for the fear that some cancer cells got away during the lumpectomy or BMX then I had nothing to protect myself. My MO would not do any scans...no protocol.
My BS ordered one for me because I had two lumps appear in my armpit. I was pretty sure they were scar tissue and he was too, but he sent me for Mammogram/US. He also used those two lumps as a reason for me to have a PET Scan. He fought the insurance company and got it for me. Result: NED anywhere in my body. Huge relief
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Thanks Bella! Glad it all worked out fine for you. Yea I was thinking maybe for the women who nodes where affected they may need it.
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I had a bone scan today. Increased aches & pains from Anestrozole, and a pain near my breast bone. Ruling out mets. Otherwise I don't think I'd have needed it.
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hi everyone. I am scheduled for lumpectomy on July 18. I think my settings are correct for u 2 see my diagnosis. Relating to variety of posts here. Crying... i had one bout
.. Then I turned to anger. Seriously angry at anyone who looked my way. A bit exaggerated, but you get the feeling.
I have also decided to avoid talking with people about their experience with cancer. My sister in law wound up telling me she had my identical diagnosis and her cAncer recurred. She doesn't know my diagnosis,, just shared heRs and bingo! I've decided this input while well-intended ends up revving up my anxiety.
So I too reason Susan loves book, visit here and speak to docs.
I'm scared. For sure. I am 100 lbs overweight. I fear the thought that cancer cells are feasting on my fat produced estrogen. Those of you who turned to plant based diet are, I believe, so right. I am working on that. Love to eat fruits and veggies but turn to sweets when I am stressed. Today was not a great day. But tomorrow I reset.
As to the advice to follow your instincts and allow yourself to feel what you feel is heartwarming and comforting
I carry each of you in all the vArious stages of this journey continued strength and endurance, hope and happiness for succeeding with each step.
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Oneof7
It's one day at a time--do the best you can each day and let the next day be a new one. The waiting and the unknowns are usually the hardest part. Best wishes for your surgery and radiation and good luck with weight loss but try not to stress over that! Keep in touch as you continue on this journey we never planned to share. The support here is wonderful. Feel free to ask questions, make comments or just "lurk".
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When I complained of back pain to my radiation oncologist, she ordered a PET scan. PET scans look at tissue more so than inside bones which is what an MRI does. PET usually rules out metastatic cancer in the tissues. In my case it lit up a compression fracture in my spine and some benign tumors in my lower back. Once the fracture was noted, they did an MRI on my whole body as well as a total bone scan ordered by the spine center I went to. At least I didn’t have metastatic bone cancer. I was told that it’s possible to have metastatic bone cancer at the same time one has early stage breast cancer. Very rare, but possible. I was shocked to learn this, so I was scared waiting on result
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I've been having blood tests every couple of days while establishing my dosage on bloodthinner coumadin/warfarin. My non-surgical arm was getting pretty sore. I pointed out to the lady with the needle that my other arm had a nice fat vein. She agreed that she could use that vein without a tourniquet. It worked just fine. As far as I know, protecting against the risk of encouraging lymphedema by avoiding blood draws and blood pressure readings on that arm applies only to the use of the tourniquet, no? If I'm correct, those of us with "easy" veins can continue to use both arms.
The reason I'll be on blood thinners for the next few months is that I developed a blood clot in my calf and threw a bunch of clots to my lung. I'm absolutely fine, but need to protect against forming more clots. As it happens the pulmonary emboli happened about three weeks after I stopped Tamoxifen. Technically, I was still weakly within the half-life of that drug. My onc believes that the clot probably built up over several weeks, and I guess I agree.
The reason I'll probably only be on blood thinners for a few months is that the clot can be associated with Tamoxifen, which is now out of my life.
I'll also mention that initially they prescribed Eloquist, a newfangled blood thinner that offered a 30-day free trial. They also have a $10 co-pay card valid for two years--unless you are on Medicare. I'm on Medicare. I have a very inexpensive Rx plan which does not cover Eloquist at all. Monthly cost? $480! So annoying. Apparently it is a law that controls this, but $10 for young'uns and $480 for oldies does seem a teeny bit discriminatory, ergo the warfarin.
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I've already been reminded that any skin puncture/injury can lead to lymphedema. I remember being told that a bee sting could start it. This in one of those don't-do-what-I-do situations.
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Brookside, your caveat makes me smile—isn't that the truth!
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Chelsea, my mother always said, "Do what I say, not what I do." This, apparently, is the inverse of that. In this case, it's more like, "Do what THEY say, not what I do."
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Does that rule out accupunture?
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I was told no acupuncture on the operated-side arm. But there are "meridians" elsewhere, and acupressure is permitted. I find an MLD session performed by an LE therapist very soothing.
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Beaverntx - a prophylactic ovary removal has been recommended for me because of genetic testing and family history.
Wondering if you would share what type of surgery you had and what the recovery time was. I am a bit concerned about exiting from work for a few weeks again... about 6 months after I'm through lumpec and radiation (and whatever else the pathology from my surgery winds up bringing)
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Oneof7, I had a daVinci robot assisted vaginal hysterectomy and bilateral salpingo-oopherectomy (Fallopian tubes and ovaries). My gyn surgeon reports the recovery time is faster with the robot assisted surgery than even with laparoscopic assisted surgery. I'm just over two weeks post surgery and my only limitations are to not lift anything over 10 pounds, nothing in the vagina, and no vigorous exercise (such as running, golfing, horseback riding), all for six weeks or until cleared by the surgeon. The one additional area is no sitting for more than an hour--whether at home or riding in a car. The latter will be with me for a long time since I'm also taking Tamoxifen and want to avoid deep vein thrombosis or pulmonary embolism.
Post op instructions were to walk and climb stairs as much as I could tolerate--and walking has proven to really help my healing from both the breast and abdominal surgeries. Surgeon also said I could travel one week after surgery so long as I got out and walked around every hour.
Hoping all goes well for you. Please ask if you have questions--either in the thread or via a private message.
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Hi. I had breast cancer in 1994 had a lumpectomy, chemo, radiation. Have had 11 biopsies #10 was cancer. Here I am about 24 years later and have all kinds of health issues. I can deal with them and I will be 65 this year. But a few months ago I started to feel some kind of feeling in my left breast(lumpectomy breast) hard to explain or describe so quickly it comes and goes. Vibration feeling of some kind!! No pain just strange!! Anyone experiencing any thing like this??? Thank you everyone! We are Blessed to be here to help each other!!
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This is consistent with the experience of a friend of mine. She was a G cup before lumpectomy, radiation, and reduction on the contralateral breast. After radiation, her radiated breast was significantly smaller than her contralateral breast, and now, 15 years later, she has gained weight, but only in the reconstructed breast. Not the radiated breast. Since I'm planning (now that's funny--planning anything with cancer!!) a lumpectomy, I'm wondering if they'll radiate both breasts for me.
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I would get that vibration thing checked out, and don't be shy about asking them to be very aggressive. I had a similar sensation--sort of tugging, "wrong" feeling. My GYN was great and sent me immediately for diagnostic mammo and ultrasound, which were read (by the breast specialist radiologist) as completely negative. Then I went for a routine screening mammo two months later, and regular radiologist saw an "asymmetry." Another diagnostic mammo and ultrasound with a long consultation with the specialty breast radiologist who absolutely told me that although he was able to see what the screening mammo showed, it was absolutely, definitely nothing. I insisted on a biopsy, and found ILC. Make them look hard there with every imaging you can talk them into.
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First, do no harm. No point in radiating both breasts if only one has cancer--the side effects can be no joke (especially on the heart if it's your L side). It's probably safer to do a BMX than to radiate a breast that is normal. Whereas chemo and endocrine therapy are systemic (designed to attack or starve stray cells that might have escaped into the bloodstream and beyond), radiation is local--aimed at any stray cells in the cancer breast that may have stayed behind after lumpectomy. (It isn't even usually done after mastectomy, unless there were positive nodes &/or the tumor was close to the chest wall or axilla). Once you radiate a breast (especially whole-breast), you will have some permanent texture changes and it will be difficult to reconstruct should you later decide to do so--you're pretty much limited to flap procedures, which are long, complex and have more complications than expanders-followed-by-implants. And if you later get cancer in your radiated-but-non-cancer breast, you cannot have a lumpectomy, because you can't irradiate the same tissue twice. (That's why partial-breast protocols are becoming more commonplace). You would have to have a mastectomy.
I'm with macmomma on this--especially if you have dense breasts. MRI will not expose you to radiation--and it could discover tumors not apparent on ultrasound or mammo. That vibration could be increased circulation--a tumor (especially a sneaky devil like ILC) developing its own blood supply.
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Yeah--I know all that about the radiation to the other breast. My cancer has been diagnosed on the left, so I'm already exposing the heart. There's a lot of conflicting literature on prophylactic contralateral radiation after lumpectomy. Overall, it seems to have more support than prophylactic bilateral mastectomy, yet they do prophylactic mastectomy all the time--even in BRCA negative people. Since AIs and tamoxifen, there is less support for the contralateral radiation than there used to be, but with the SEs people experience from AIs and tamoxifen (and the fact that only 30% of women complete their 5 years of hormonal therapy), maybe it should be revisited. Lots of times, older medical interventions are dropped, not because they were ineffective, but because the medical community is convinced that newer treatments are so much better they will replace them. When the newer treatments prove to have dramatic effects on quality of life, people don't seem to go back in the literature and reconsider some of the older approaches. I've been a physician for 30 years now--current literature suffers from what CS Lewis termed "chronological snobbery." People are data-driven and don't always think through things with careful clinical principles.
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Well, good luck. As a physician, you are probably well aware that everyone's experience with a particular treatment is unique--and even subsequent and identical treatments in the same patient can have different results--and a breast which hasn't had a chunk cut out of it might not respond the same way as its contralateral counterpart--so symmetry is not a given, even if both breasts are radiated at the same time or immediately sequentially. I elected to have a lumpectomy and APBR, and to leave the other breast alone for now. Almost 3 years later, my lumpectomy breast (R) is about the same size it was when I was diagnosed--but actually looks better than it did before. (During rads & in the yr. after, its seroma swelled so much it was the larger of the two). My other (L) one is at least a cup-and-a-half larger (weight gain--it used to be about .5-1 cup larger) and hangs like a basset hound's ear. Once I am recovered from the hand and arm surgery that faces me next week (from injuries resulting from falls due to my clumsiness and a previously-unknown congenital bone length irregularity), I will get a PS consult and see what he advises doing with my bigger boob.
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I had my Lumpectomy on June 18th, 2018. 3 lymphnodes nodes were removed as well. The recovery was painful due mostly to the lymphnodes.One of my test results came back the margins are not clean and they want me to go back into surgery in nine days to remove more tissue. It's only on the left side, so it will be a huge difference in size I'm not looking forward to it.
They want me to have radiation, I don't want to have radiation. Then they want me to have tamoxifen for 5 to 10 years and of course I don't want to take tamoxifen for 5 to 10 years.
I'm physically active I do martial arts hot yoga swimming and I've read so many stories of women's bodies aching broken bones and it just horrifies me. I already have arthritis in all my joints with the exception My neck and hips. I just feel like doing radiation and chemo will compromise and further deteriorate my joints.
Are there any women who have felt this way and moved on and are doing well in their physicality?
Dx invasive ductal carcinoma Estrogen positive, Progesterone positive, Her2 negative. Stage 2, grade 2. 2.5c
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IDC 2.5 cm, and no clean margins on the first pass--sounds like you should opt for the radiation. If you don't want radiation, your only other viable option is mastectomy. I had accelerated partial-breast radiation, 16 treatments, few and mild side effects (all of which have subsided).
And yes, there are side effects with endocrine therapy (you say tamoxifen, so you must be pre-menopausal; if post-menopausal, aromatase inhibitors are more effective). There are ways to deal with the side effects, especially the arthritis (keep moving, heat, ice, NSAIDs, arnica gel, Bio-Freeze) and (if on an AI rather than tamox) calcium, Vit. D3 & K2, magnesium & (if prescribed) bone strengthening drugs to prevent or delay osteopenia & osteoporosis. (That's the one side effect Tamox. doesn't have). You are active, so you are probably not going to gain much weight--I was already mildly obese when I was diagnosed, so that's been tough for me). Moreover, staying active is the best way to keep arthritis from worsening--and the more weightbearing exercise you do, the stronger your bones will remain. You are already doing exactly what you should--keep it up. (Do as I say, not as I did...or failed to do).
I did just suffer a couple of hairline fractures in my L wrist & R arm--but that's only because I've been a klutz all my life, I walked too fast (and unconsciously dragged one foot) and my soft rubber sole stuck to the hard terrazzo floor and down I went. If you are as athletic as you say, you probably have great balance and proper gait. BTW, the X-ray confirming those fractures noted "normal age-appropriate bone density," despite being on letrozole 2.5 years.
Don't jump the gun and assume chemo--did you get your Oncotype DX or other genomic testing done? Most women >50 with our type of IDC can safely skip chemo. (and some <50 as well).
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Kalitria- I too had to have a reexcision. Its not as bad as the first LX, they go in the same spot & no nodes are involved, and less drugs at surgery (I wasn't intubated). It sucks, but its doable.
I did rads, no regrets. I'm on an AI, not loving it but believe it's insurance against reocurrance. I didn't do chemo, and as TAILORx results came out, I'm glad I didn't.
I'm guessing from your mention of tamoxifen that you're young, premenopausal. Is your tumor getting the OncoDX testing? This would help you with the decision making on chemo.
All BC is different, only you can decide on your treatments. Do your research, you can always stop taking tamoxifen if it truly interferes with your quality of life. Best wishes to you.
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