Lumpectomy Lounge....let's talk!
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Tappermom383 - there with you in age at 68. You are so lucky too. I should say blessed! I however need chemo starting next week. I was going to the silver sneakers classes religiously, but all these doctor appointments messed that up big time! I’m going to try and walk some when I don’t feel sick. I hope I can do it
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Loza, my "adventure" was similar to yours, only 2 yrs ago. Oncotype 16, so no chemo (especially not at 64). Small (1.3cm) tumor "high & outside," so I needed only 16 radiation treatments, just to the tumor bed. I was warned about fatigue and skin issues, but the fatigue never happened; I got some pinkness, tanning and temporary fibrosis (skin hardening over the radiated area) and the mammary seroma (in the tumor cavity) did enlarge enough to take me up a cup size for a year. Instead of tamoxifen I'm on letrozole, an AI, for at least 5 yrs (I'm 2 yrs in). I started out osteopenic (the DexaScan was an hour before my first rad session), and AIs--because they suppress estrogen production--can further weaken bones. So I had a Zometa infusion and switched to Prolia when Medicare changed its mind and decided to cover it under Part B after all. Had two Prolia shots 6 mos. apart. Just had my biennial DexaScan--and my osteopenia has improved!
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I started my radiation yesterday, I couldn't sleep well thinking of the R damage my lung or heart.
I had my 1st lumpectomy on Sept 1, didn't get clear margin one area and close margin (<1mm). BS told me new guide line is 2 mm. She wanted me to consult with RO before I decide to another surgery. I found out having clear margin over 2 mm is very important. I got 2nd one Sept 26. I was not that worry because BS was confident saying that I still have 5% not successful but it will most not likely. Post Op- I was in 5%, I was very depressed. The worst part was BS didn't explain why... whether I have more tumor or the tumor size bigger than the image... she didn't look at my eyes...weird. I don't know why I didn't ask questions...she said "you are still DCIS" when she leaves the room. I lost trust in my BS that moment.
I am trying to stay positive though and decided to get Radiation to lower the recurrence. However, I don't sleep well often thinking of that I should have mastectomy instead Radiation.
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Bluesky01 - when you talk to your radiation oncologist, be sure to ask what kind of radiation machines avoid the heart and lungs. The newer beam machines can avoid these areas. I would think most cancer centers have the latest ones. I’m selecting the face down beam machine to avoid my heart. My RO agreed
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Blair2 interesting idea, so they radiate through the back? What chemo will you be on?
Bluesky what i could tell you is you could drive yourself crazy like this First of all to make yourself feel better why don't you go for a 2nd opinion, it's very common. Are you gonna be on any drugs also? For the record, from all i've read and spoke to surgeons mastectomies are not a sure thing. There is plenty of cancer taht could be in the chest wall. There is a lot of controversy. If you are considering mastectomy for prophilactic purposes then also there is the issue of ovaries? there is a lot of estrogen from there? So this is a not quick conversation. And is it not a Medical Oncologist guiding you, it's not just the BS right? So what does MO say? And read the report exactly, and you could check out sites as these with a more detailed thread on the type of pathology they found. I don't think you have to run and do anything so urgently, you could get your facts straight so you feel good about your decision.
I was of the thread, ill try to follow more closely so I'll know who is where, what.
My scar from Oct. 14th is still not healed, and it still hurt. BS said to give it time! Can't have seat belt or a/t close to it. And there is a seroma on top and bottom of scar, i think i'm getting used to it. To the pain also. Crazy.
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2 weeks out from surgery yesterday and I was able to go to my favorite yoga class. The bra I wore rubbed my underarm incision the wrong way so today it is quite sore. I feel like the stretching helped some of the tightness I was experiencing. Steri-strips are still intact on my breast and I am leaving them put. I had my first MO appt Monday but my FISH results were not back so it was kind of a lot of hypotheticals. Yesterday I got the call that my FISH results were negative. I thought this was good news and was surprised since my biopsy was positive via IHC method. Now my oncotype was ordered , so another wait begins. I am 43 years old, so AI Tamoxifen in my future for sure. Welcome Loza, sounds like we may have a similar treatment plan ahead.
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Mamallthetime - The beams of radiation are underneath your body. If you had an MRI, it’s a bit like that where your boob is face down (dangling more or less), and the beams shoot across the breast. However, not in a tube like machine. My oncologist said it wasn’t the most comfortable position to be in, but I’m pretty flexible and feel I can do it that way. It’s hard on the sternum, but should be doable. She said I would need enough breast tissue to do this, so I mentioned it to my plastic surgeon to leave them big enough to have this happen. Hopefully that’s the deal.
My chemo is taxotere and Cytoxan. 4 rounds - 12 weeks (1 round every 3).
Gigibee - the wait on Oncotype is hard. They need to come up with faster results, and some day they will perfect it. I hope you score low. I would have had just radiation and hormone therapy, but got the shock with my score ending up at 27. That made my grade go up from 2 to 3.
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momallthetime, with face-down radiation, you're positioned like in this picture. The radiation machine positions itself kind of alongside/above the shoulder on the affected side to radiate downward at the breast, and then under the shoulder of the non-affected side to radiate upward at the opposite angle. Kind of like this, if you imagine that lower lightning bolt is coming from under her right shoulder!
It's like a sandwich of radiation, angled precisely to avoid the lungs, heart, and ribs - as much as possible.
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Angela - that’s it I believe. Are you being treated with this technique? If so, wouldn’t the patient be nude dangling down on this thing? Oh - the things we women have to put up with
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Yes it's undignified. I know that for the breast MRI at the imaging place they place you in the same funnels used for stereotactic biopsy (as i had done). The imaging place I go is run by women only. But yes, it's a choice to be able to save these organs.
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Yes, I'm receiving this style of treatment. I am undressed from the waist up, but they always drape a lovely heated blanket over me for warmth and modesty during the treatment itself (once I'm all triangulated with the machine, lasers, and tattoos!)
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Blair2 - "dangling down" hahaha that made me laugh. I will be getting this type of radiation soon (mapping tomorrow). My husband was with me when I went to the RO yesterday and when she was trying to explain how I'd be laying on my stomach like the pic above, he asked "how do you keep it (the breast) from not flapping around?" I almost died of laughter ...can't take him anywhere!!! The RO nicely said "well, it's not like it's windy in the room".
Ain't it the truth, we take our tops off for so many and everyone gets to touch. It's like giving birth .... sure, come on in and take a look and touch whatever. The thought of laying on a table like that with my boob "dangling down" sounds humiliating. But, we have to do what we have to do and these technicians have seen it all before so I guess I should just go and think happy thoughts. Might as well laugh about it because if I don't, I'll go nuts!!!! The things we do. Have a nice day ladies and I'll be thinking of this funny story when I have to lay on that table thing tomorrow
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Ellyn27 - your husband sounds like a gem! A bit of levity is great in situations like these!
I am receiving my treatment flat on my back. The technicians keep my gown covering me once the marks are all lined up too. You're exactly right, so many people looking and touching lately. The other day I had a very stiff neck. I was at the grocery store when I suffered a spasm and the gentleman in line asked if I was okay. He proceeded to show me a scar he had on his neck from a vertebrea surgery, and I almost lifted my top to show him my lumpectomy scar......I'm seem to be beyond caring about modesty anymore.
What fun times.
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I have a question for you ladies. I am having a lot of trouble with leg & foot cramps. Mostly at night, but also some during the day. Lately, my hands have been cramping during the day. Last night I was awakened at least 15 times with leg/foot cramps and muscle cramps in my chest wall on both sides. Scared my DH half to death! He thought for sure I was having a heart attack (nope, the chest wall itself was painful to touch--not a heart attack symptom.) That has gone on and off all day, especially when I bend forward or twist my torso, such as when looking over my shoulder. My PCP advised magnesium or potassium. Otherwise, she wants me to take Lyrica, which I do NOT want to do.
I'm concerned about taking the magnesium, as it can cause diarrhea. I already have a propensity for diarrhea due to IBS, but it's been particularly bad for the past 2 years (duh!) I really don't want to add more drugs. I have been working since June to get off some of my meds and so far I have been able to stop 3 psych meds, and most recently I have cut back on gabapentin from 600mg to 300mg. I'm wondering if that is what has set off the rib pain. I bought a low dose magnesium that I'm going to try tonight. I'm dreading going to bed already. I just don't want to roll around with cramps all night like I did last night!
Any suggestions?
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Oh my word, Poodles - what an awful night! I started taking 250 mg of magnesium daily to offset the irritability and depression I was experiencing from the anastrozole. I’m handling it just fine. But another sister I’ve been chatting with recommended magnesium lotion to me (said her husband uses it for leg cramps) because I was complaining about my leg cramps. I bought it on Amazon.
Here’s a photo of the bottle. I rubbed it on my legs - it seemed to help. Not using it so much now that I’m ingesting magnesium.
MJ
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Poodles, those spasms are the pits! The worst for me is the foot & lower leg dystonia--my foot dorsiflexes, my toes spread out & up and the shin muscle over my tibial hardware twitches visibly. Of course, it hurts like hell and wakes me up. Doesn't happen often, but oy vey! I do take my magnesium (500mg for bone health) at bedtime, which makes it happen less often. When it does strike, I go downstairs for some orange juice (grapefruit works better but is a no-no with both letrozole and my ARB blood pressure med) and salted nuts, and that (along with a Lyrica) seems to calm it down. That's the only time I take Lyrica--not prophylactically. (It costs an arm & a leg too, and my Medicare Part D plan won't cover it). I do one other thing that sounds silly, but I figured it was worth a shot: someone suggested keeping a bar of soap by my feet to prevent foot cramps (the kind where the sole hurts and the toes curl under). It's a "bubbe meisser" (Yiddish for "old wives' tale"), but--like chicken soup--it may not help but it couldn't hurt. Since I started doing that, the classical foot cramps have happened less often.
As for the other muscles, I used to get spontaneous muscle spasms of my chest and axilla. starting at age 24. Sometimes that particular armpit would sweat so profusely that my bra got stained by a darker shirt or blouse. It happened occasionally into my early 40s and then stopped as mysteriously as it started. Nothing seemed to bring it on and no substance or exercise relieved it.
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LOL, after my mother died we found a bar of Irish Spring near her feet. She swore by it. I guess it wouldn't hurt to try that.
Tappermom, I've never seen magnesium lotion. I wonder if I could find it at While Foods? Hmmm, must make a trip to WF...
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Poodles and Sandy, just in the last couple weeks I read an article about putting soap in bed at your feet. Amazing that it helps. I don't have anything to offer, Poodles, to help you out. From the little I researched, I do wonder if cutting back the gabapentin is a bit to blame. I hope you discover answers! You sound so miserable
Gentle HUGS!
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Thanks, Peggy. Did it say to use any particular soap? I really am wondering if reducing the gabapentin is to blame. I've been taking a decently high dose for years, so maybe my body doesn't like withdrawal. I'm just so sick of taking all this medicine~! I was hoping to be able to drop that one. I have been sleeping so much better now that I'm taking Melatonin that I just don't need all these strong meds to help me sleep. Or so I thought, anyway! Today my muscles are sore between my ribs and in my mid-back. It doesn't take much to set these cramps off, sometimes just turning to look in a different direction, point my toes to put on a sock, or even just the weight of a blanket over my foot.
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No, Poodles, no special soap needed that I recall being mentioned. I think this is the article I saw. Soap and Cramps Snopes thinks it is unproven. But it sure seems harmless, so why not give it a whirl? I read another place that Dial and Dove don't work. Who knows why? Not me.
I don't blame you for being tired of taking all those meds. Glad you are sleeping better. Hope we can get the muscles happy.
HUGS!
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I use a little freebie bar of soap from a hotel room. Why waste the stuff you actually wash with?
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Sandy, great idea!!
HUGS!
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Poodles, the ladies in my weight loss group swear by Ivory Soap for foot cramps.
Jo
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Sandy - that’s what I use, too! Does it help? It may but it sure doesn’t hurt!
MJ
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I just read this discouraging article on Netscape News' Health site. Anti-Hormonals more than 5 years Probably most of us will be on Tamoxifen or AIs forever (assuming the side effects are tolerable). It is scary.
HUGS!
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bluesky, if you haven't started radiation yet I recommend you get a second opinion from another surgeon. I had to have mastectomy after lumpectomy. I had lvi and left over DCIS. My surgeon knew this without having to do a revision. I wish you didn't have to worry so much. Pm me if you want.
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LOL, I just happen to have FOUR BARS of Ivory Soap in my purse! Because, who doesn't, right?
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Poodles, why the heck do you have SOAP in your purse? That's hysterical.
HUGS!!!
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I see the MO on 11/21; the RO on 11/28. Second surgery, reincision, was 11/14. I'm still waiting for pathology on that. Small very dense breasts, if I get another positive margin I'll need a masectomy.
I'm nervous on all fronts. BS will call me with pathology as soon as she gets it. I get 4-5 hours of sleep before my brain goes on overdrive and I'm compelled to get up to research something about breast cancer. Its nice knowing a forum like this exists.
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That NEJM article is nothing we didn't already know. Though if a triple-neg. patient survives 5 yrs she is essentially cured, we Luminal A gals--no matter how small and non-aggressive our tumors--are never home free. If we live long enough, we will get a recurrence. Best we can hope for is NED till something else--hopefully, of old-age natural causes--gets us. The depressing thing is that there may be evidence now that even lifelong hormonal therapy is no guarantee against recurrence because ER+ tumor cells can mutate to synthesize their own estrogen! Tamoxifen wouldn't work after that because the cells produce estrogen from within, so the receptors aren't involved; AIs wouldn't work because they only address androgen-to-estrogen conversion in the fat cells and adrenal glands. So I guess the best we can hope for is to keep taking the drugs until we can't handle the SEs anymore and we've made it to, say, 80. After that, quality of life takes precedence over remaining lifespan.
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