Lumpectomy Lounge....let's talk!
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steph, probably the fact that you had chemo may have made him more confident in letting you opt for node radiation rather than removal.
Blooming, they don’t bother ordering OncotypeDX testing if either the tumor size is so small and other factors so favorable that it’s a given that chemo wouldn’t offer an advantage that’d offset its risks; or if tumor size, # of nodes+, or other aspects of the tumor’s biology indicate that it is more aggressive and contains enough rapidly-dividing cells that chemo would kill, that chemo is worth it. It’s the “gray area” in between for which OncotypeDX is ordered.
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Thank you so much Molly and ChiSandy. I am also considering nipple sparing masectomy now and I will get a second opinion there next week. I don't have family around, I feel so lonely and overwhelmed when deal with all these. You ladies are extremely helpful to me.
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And whatever tumor cells were in your node that chemo was unable to kill, radiation would definitely destroy. Choosing radiation aimed at already-identified nodes, rather than SNB, doesn't completely prevent LE, but often SNB surgery removes non-sentinel (but still functional & valuable) lymph nodes attached to the sentinels. The radiation can precisely target the nodes that had been involved, using the prior imaging as a road-map, without injuring the healthy ones.
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You are doing great, steph. Keep asking questions. As someone that ended up with a mx anyway, I am happy to answer anything I can.
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ChiSandy, Thanks for explaining indications for Oncotype DX testing and the "grey area."
Sending good wishes to all.
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Blooming, a breast navigator walked me through my path report at my post surgery visit. To keep my bra from rubbing my SNB incision, I used a piece of soft fleece pinned to my bra. Also when walking, I tried to keep my hand on the surgery side on my hip instead of dangling. Imagine waking with an attitude, hand on hip, elbow out
This kept the rubbing to a minimum. Be creative to get relief where the SNB incision is concerned, it caused me more discomfort than the LX incision. 10 months later just now starting to get feeling back.Gloria, welcome! Not where any of us want to be. But as you can see this is a great support group.
Tappermom & Stephi hang in there, once you get your treatment plan it's easier to deal with. But waiting to get the plan is awful. Everyone here will tell you it's doable, just have to get the dang plan figured out.
VelvetPoppy, I like your mantra.
Hugs to all going through treatments!
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Blooming, at my pre-op “teaching session,” the surgeon’s NP gave me a “PPP,” or “protective pillow purse.” There is a group of volunteers in Chicago’s north suburbs called “Protect the Girls” (they’re not online, alas) that makes them once a year to distribute to breast cancer centers in the area. It’s a pillow with a velcro-adjustable shoulder strap so that you can hang it hands-free over your shoulder, wearing it between your inner arm & armpit/breast, and it cushions your lumpectomy and SNB incisions. It has a smaller pillow inside a “kangaroo pocket,” which you can pull out and use as a cushion to keep your car’s shoulder-belt from irritating your breast. (Unfortunately, it moved the belt to a position where it produced a distinct red mark on my neck that resembled a “hickey,” giving folks the wrong impression. I got many “you GO, girl!” nods and smiles, though).
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Had an MRI today to see if there was anything they missed by not talking a better look before the surgery--the lx was a piece of cake compared to laying face down in a tiny tube with fire alarm sounds going off at your head (despite the earplugs) for a half hour!
I've always been mildly claustrophobic, but I was nearly jumping out of my skin trying not to squeeze the emergency balloon today. I tried to distract myself and made it through--but only because I figured that stopping the test would probably mean redoing it!
But I don't know how I'm going to be able to do this every year for monitoring (alternating with mammograms at 6 month intervals). Is there anything that can make this more bearable in the future??!
(I know there's nothing to make the waiting for the results more bearable...)
Blooming, the tape over the incision was enough to keep my bra from rubbing it. (But I wore stretched out athletic bras and iced a lot.)
Sandy, that sounds like a very helpful gift!
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I haven't posted for a while mostly because my recovery is proceeding well with no problems so far. The seroma never did recover its size -- it's still there but just not very bothersome. There is no sign of lymphedema either, so I think travel will be just fine. I do have the appt with the clinic tomorrow morning but it's going to just be for education and not because of any problems.
I decided to go ahead with radiation because it seems to me that the benefit outweighs the risk. The RO said that if it recurs it would mean mastectomy and chemo and I'm terrified of chemo. I just don't want to go there.
But I still have time to think about it, so I will.
I remain grateful to you folks for your patience and support.
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lexicoe, I had the same reaction to that MRI. I am very claustrophobic. Everyone told me how great this would be, lay down on your stomach, do the MRI. It was neither great nor easy. I did have her stop the MRI about 10 minutes in. I thought I was going to have to get up and run down the hall. My heart was racing and I was breathing so fast that my hands and feet fell asleep.THANK GOD I don't have to go through that again.
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Natsera, how long is your flight again? If over 4 hrs., definitely wear compression so as not to provoke LE. If over 2 hrs., at least bring it with you. Never wear a sleeve w/o a gauntlet or glove; if a gauntlet, it must completely cover the knuckles on the back of your hand or else you could get finger-swelling. And if you are getting targeted rather than whole-breast radiation, if heaven forbid you get a recurrence or new primary tumor elsewhere in the breast, outside the first radiation field, it might be possible to opt for another lumpectomy rather than require mastectomy. I didn’t know that until my nurse-navigator--who was facilitating that month’s support group meeting--told me. I thought the sole reason for choosing the targeted Canadian protocol was to minimize side effects and protect as much healthy tissue as possible. Live & learn.
Lexicoe & poodles, I guess there’s an upside to having pendulous fatty breasts after all: easier imaging.
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Poodles and lexicoe - you are so right about the MRI. The noise when I had one for my shoulder was nothing like the noise from the breast MRI. And lying on my stomach like Supergirl for what seemed like forever was excruciating. I've had surgery on both shoulders and without my Pilates classes, I never would have been able to do it. The worst thing was not knowing how much longer I had in that tube. If and when I have another MRI, I'll ask the technician to give me some time markers (you're halfway through). But it's the MRI that revealed my spiculated mass - it was a necessary part of my diagnosis.
I can't tell you how much finding this site means to me. The support of all you ladies is keeping me sane. And you're right, tbalding - once I have my treatment plan, I'll be able to move forward and beyond where I currently feel stuck.
MJ
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I’ll never forget my first MRI, when I slipped on black ice crossing a street back in ’91 and they needed to rule out an ACL rupture. They offered me neither earplugs nor headphones, just warned me “it’ll be noisy and you’d better lie very still for 45 minutes.” That machine, when it wasn’t knocking and banging like an active construction site, kept repeatedly buzz-humming something that at first sounded like “sodium, sodium” and then morphed into “bloody humans, bloody humans…” I’ve had four more since then, none of them as traumatic—either they were “Open MRI,” or I was given earplugs, or noise-cancelling headphones with my choice of playlists. The only commonality was having to remove all jewelry and lie supine on a very skinny hard table for what felt like forever.
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Poodles, did you end up finishing the MRI after stopping it?
Tapper, yes, I know it's a good diagnostic tool--especially for ILC, so I will probably have to learn to somehow deal with it. And I agree, I had one on my wrist some years back and the sound was nowhere near as bad as the breast one today.
Sandy--construction noise is a great description! I'm also glad to hear the subsequent ones were not as traumatic. My only choice was earplugs but I can't imagine how much worse it would have been without them!
Natsera, sounds like you made a good choice with the radiation and I'm glad recovery is going well.
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Poodles, how are you doing?
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Having had brain surgery 10 years ago, I knew I hated MRI's. With my claustrophobia, I insist on medication. For me, zanax works best - one when I get there and another right before they start up the machine. Of course I need a DD to get home but it really is the only I can do it. The noise, even with headphones is terrible. The MRI was the worst part of my experience to date. So, keep on trucking.
I have to decide by Friday whether to stop my Taxol after 8 treatments rather than the originally planned 12. MO just sort of threw that out last week when I told her how bad my neurothropy was. Anyway, DH wants me to do everything I can but I don't understand MO's reasoning for the suggestion - came out of nowhere and I couldn't process it while I was still in the office. I will be 71 in May and think that is part of MO's reasoning but I have been up in the air. Had a week off for administrative reasons and I feel so much better than I did last week that I know I'm going to need to hear some pretty compelling reasons for continuing Taxol rather than just getting herceptin.
But I am rambling. Thanks for being here ladies.
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Lexicoe, others have offered good suggestions about enhancing experience of Breast MRI. Have had MRI's for other parts of body. Found the Breast MRI particularly painful to lie on my stomach. At Dec high risk screening MRI at Hospital A (academic, tertiary care), I wasn't sure I could last. At recent Core Needle Breast Biopsy MRI at Hospital B, I described my previous experience and asked for help. They offered extra sheets under stomach and I think adjusted position of padding. Biopsy MRI involves fewer pix than screening MRI so that helped, but throughout, there was much less pain in abdomen. Also asked Hospital B staff to give me time checks as I'd had with MRI of other parts of body. Next time I need Breast MRI, I'll ask if music is available, as it is for other types of MRI. I'm not good at meditation, imagery, or other approaches that could distract and calm, but perhaps others have had experience to good effect.
Thanks ChiSandy and Tbalding for info about pillows and about standing position to minimize irritation of SNB and LX incisions. You inspired me to Google search and found some hand made Etsy items to cushion seatbelt, special purses to carry special pillows, etc. Also, special cushions and pouches for post-mastectomy or reconstruction and for drains, ports, etc.
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I basically have been using an ice pack as a pillow between my arm and breast to deal with the pain from the SNB. My coworker noticed and cut up a plastic grocery bag to make it shorter, taped up the bottom, and gave it to me to drape over my arm with the ice pack in it. Hands free!
My MRI strategy is to sing songs in my head that I have memorized. If I start panicking I try my best to focus on the song lyrics. I had to get an MRI of my eye once and that was horrible so the breast one seemed easier in comparison - I think face down is less claustrophobic than face up because you can try and forget you are enclosed. The MRI biopsy is a little easier with claustrophobia because they keep taking you out of the machine and they told me how long each picture would take. They actually communicated so much I couldn't focus on my song lyrics but I didn't need to as much.
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I had 2 MRIs - the first was before my surgery. I had a big tomato from the biopsy and they wanted to make sure nothing was missed. I could barely walk my back hurt so. At least they played music. It took about 40 minutes. The 2nd one was after my mammogram and they were looking at something (which turned out to be nothing) I took a couple Tylenol. They recommended Valium but I had no one to drive me so just the Tylenol. At least I was able to move. Again they played music. I had headphones. DH was really claustrophobic and he took Valiums several times before each MRI. Needless to say, I drove him
HUGS!
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My LX boob is starting to hurt. This makes no sense to me since surgery was February 7th and it hasn't really bothered me at all. Now it feels like there is a golf ball in there and it's sore. I can feel it and there isn't anything there. Even allowed DH to feel around on it and he doesn't feel anything either. It's so annoying! I have my official dry run rad appointment tomorrow.
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Today's been tough - and that's a surprise! I've felt so well since my surgery last Friday but today I am totally wrung out. I have no energy and am in pain. My head feels so foggy - it's really weird. I'm trying to get some work done but having a hard time. Is this delayed reaction normal
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Welcome to "seroma-land," Vargadoll. Your tumor cavity has likely been filling with serous fluid (sort of like plasma) and should show up as such in a pre-rad CT scan as mine did. It will probably enlarge somewhat during rads but slowly resorb afterwards. You should also ask for a lymphedema consult, to rule LE out. How many nodes were removed?
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Tappermom, I'm no expert! I had LX and SNB same day as you did -- 3/31! I'm feeling worse today. I'm trying to do more work than I did yesterday. I've also stopped taking narcotic pain meds. Those stay in the system for awhile. I understand that the effects of general anesthesia remain for a number of days. If you're also trying to do more and you might also be on less pain meds, perhaps that is making it seem as though you're worse. Yesterday, I had to take care of two delicate situations that required diplomacy and strategy. It took me much longer to write take care of those things than it would otherwise. Afterwards, I felt weary. Feeling weary again. I'm hoping that our bodies are telling us we need more rest! Sending good wishes to all.
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chiSandy- I was hoping you would respond! The surgeon thought he took 2 but he actually got 3. Apparently one was hiding. I thought it must be something like that but wasn't sure. I am more tired than I have been since surgery to. There has been alot going on and I have been really busy. It just makes me so mad!!! I have never had to slow down or require rest (or more than 3 hours sleep a night ) to accomplish everything I want to during my day. I am heading out to my Aunt's funeral and will check back in when I get home.
Thank you!
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Thanks for the words of wisdom, blooming. I just got a press release written that had to be done today and now I'm back in my comfy chair. It's so hard to respect my body's need to slow down but today I don't have any choice! Weary is a great description
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tappermom- My surgery was a few days before yours and I had the same thing happen. I think partly because I tried to do more than I was ready for and partly because some of the numbness turned into pain.0 -
hello tappermom et al. I had my LX and SNB march 30 I still feel tired. I am doing more each day but I do tire easily. I remember my breast surgeon saying that pain maybe worse the second week and I will have numbness and tingling in under the arm. completely normal
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Hi again tomorrow is the day of my lumpectomy and sentinel biopsy, i am very nervous is there is some recommendation that you want to share with me please i will definitely appreciate it.
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In your pocket for tomorrow, Vivian
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Best of luck tomorrow, Vivian. Mine was last Friday. Talk to the anesthesiologist about any concerns you have (mine was vomiting upon waking up - he gave me a great cocktail that kept my stomach calm). You'll be tired and sore when you get home. I couldn't eat any solid food as my mouth was so dry from the anesthesia. Had Popsicles and soup - tasted so good! If you take pain meds like Norco, be sure to drink lots of water and take a stool softener (the opioids make you constipated). Give yourself permission to just sit back and rest - you'll need it. Come back here and let us know how you do.
MJ
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