Lumpectomy Lounge....let's talk!
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Just want to say how good this thread is !!!
but most of all I want to say thank you everyone for posting - it's such a great forum to either find answers, seek information, or just to be reassured.
I am just 4 weeks past my lumpectomy, I never had a bruise or was overly sore. But now I do have a lot of scar tissues forming in fact triple the amount of what they went in to get in the first place. So this now seems a little pointless :-(
I work in retail & took some extra time of work (yay no Christmas frenzy this year), I thought I would start back at the gym this week (went slow, no weights & restricted arm movements only. Was a personal trainer before retail so am educated on rehab exercises) But boy is it tender & sore now (I have stop exercise till recovery). I have tingling sensations in the breast & some of the hard lumps are now sore - but not red. After reading through the post I see that it's quite normal to feel sore & have tingles at this mark in recovery...
I am on a "watch & wait" merry-go-round, as I have LCIS,(lobular carcinoma in situ) I didn't get clear margins but LCIS is multi focal & bilateral & can only be found by pathology. But the surgery & the wating is still the same.
Was so good to just get on this thread, seek answers & reassurance before the anxiety takes a hold again
Thanks again &hugs to all
Kathy
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Hi Cora: thank you for sharing. I am post lumpectomy almost 4 weeks. I am just returning to crossfit (senior program). My trainer is really good and has modified my exercises for me so that I don't have much pain. There are some lidocaine creams at the drug stores that will help with the sensitivity you are having
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Corah I had first lumpectomy on 12th October I had a large hard sore piece across my incision when I went back DR drained a lot off it I didn't get clear margins and 2 weeks later I had to have another lumpectomy 2. Days before the op my breast was killing me hard and sore I took painkillers and waited till the next operation All fine since. Maybe ring the breast care nurse.
Welcome Ohsix23 lots of ad use here I unfortunately had Paget's so I lost my nipple so I can't advise you either.
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Thank you ladies for the warm welcomes. This site has been helpful over the past week since this whirlwind started. However now I'm stuck waiting over a month just to consult with the BS who will be performing my lumpectomy. Frustrating because I work at a big academic university hospital in pediatrics and if a child was found to have a "lump" or anything suspicious for cancer they would be completely worked up within a day or two and have a Broviac in by day 2 or 3, treatment begun within that same week. Not sure why adult medicine moves so painfully slow in regards to this stuff, maybe because there are so many more adults with cancer so resources are spread thinner, but I'm used to seeing immediate action, and I'm part of that team caring for a child with a cancer diagnosis, so I'm having a difficult time accepting all this waiting. I'm sure nearly everyone on here can relate.
PontiacPeggy, thank you for the welcome and suggestions. I will have to look into that book and filled out as much as I could so far in the settings. Molly50 thank you for sharing your experience, I'm sorry to hear about your needing a mastectomy. :0( Cora, thank you as well for replying. Pagets sounds horrible. Miko, I'm so glad you were willing to share your experience of what I believe my surgery too will entail. Thank you so much for replying and I'm so sorry to hear your diagnosis was malignant. :0( My prayers go out to each and everyone of you on this site.
I know if I get a cancer diagnosis and not benign papillomas the fate of losing part of my femininity will be something I will be forced to face and deal with. I feel somewhat ashamed I'm worried about what seems like such a trivial concern in the face of ones mortality, but it feels like a core part of my identity/sexuality is at stake too, if that makes any sense. I'm sure most women understand where I'm coming from and had the same concerns themselves when they were at this junction of their journey too. Maybe I'm more focused on that part, just taking 1 step at a time, too afraid to even think about the possibility of a malignant diagnosis right now and what all that will entail.
Anyway, I'm very grateful to have found this site and forum. I know that being part of a support group can help immensely with such matters. Thank you all for being here.
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I had my first post treatment mammogram about a month ago (BS did say Herceptin can interfere with readings but wanted it anyways). It was not painful at all. He sent me to our hospital here which is new so new machines as well. Believe it or not, I still have a tanned blue spot from the injected dye from surgery almost a year ago just above my nipple about the size of a nickel! Tanned of course from rads! Anyways, my Mammo was clear! I see my BS every 6 months now for 5 years. My shrunken firm boob vs my normal floppier boob is common ...all these changes! I had 5 tattoos done, only one noticeable is between my breasts and kind of a blue/black...looks like a blackhead!
Return to work has been difficult. I stand all day in steel toe shoes more or less on concrete (ant-fatigue mats do little), and lift a lot of product. It's my lower back which is suffering! Not from any of the lifting but the standing. It's so sore when I finish my shift and I've had a gradual back to work. Next week I start full shifts soI think I will get to my doc and a chiropractor for some relief! This happened a few times when I was off work too if I stood too long. Other than that it is great to be back with my co-worker and customers. Lots of double takes looking at me when I would say hello to someone, short hair and all! Ive given up on losing the weight I gained until after Christmas and Herceptin. Way more active, eating less and haven't lost an ounce! Will have to get a few new clothes befor Mexico in Jan.
Wishing everyone the best today and everyday ....I love this board and although I don't post a lot I do try to read it all and my thoughts are with each and everyone of you!
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thanks molly, will do!!
Great pic!!
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Oh boy.... cellulitis is nothing to sit on tbe fence about. I've had it numerous times this year alone. Twice it morphed into sepsis. If your arm is warm and starts to look rashy, run to the doctor and get it checked.
Anyway, I couldnt figure out where to post the comments below, but if my experience helps even one woman....
For seven years Kaiser mistreated my LE, nearly ruining my life and making me suicidal. I saw 5 LE-PTs during this time period. Not one of them got it right. Turns out that the truncal LE that I mentioned to each PT was the real problem.
When my upper right arm reached 27.5" this year, a 4" increase in girth in 9 months, I sought help from a non-Kaiser PT. Within 15 minutes she pinpointed why my arm kept getting worse and why I kept having repeated episodes of cellulitis despite care from many healthcare providers including a whole bunch of docs. Whether your arm is swelling or NOT, a LE-PTshould always evaluate, manage, and treat the corresponding quadrant including the upper chest, tummy area, and your side.
All this new PT had to do was "clear" & drain my trunk and my ARM got softer and smaller. She does not have to touch my arm to affect change in my arm! After only 2.5 weeks of truncal MLD + arm bandaging 2-3 times each week, my arm reduced by over 5 liters of fluid! Again, in contrast Kaiser's PTs consistently made it worse especially since Nov 2014. Not one of the Kaiser PTs followed the standard of care for LE which lo and behold included treating the trunk. Period.
As for why I kept getting cellulitis, including 3 months in a row this summer?..... Drum roll! Because the focus was always on treating my arm only with MLD and compression garments instead of treating my trunk/quadrant, this led to excess lymph fluid pooling above my mastectomy incision. This SPLIT THE SCAR OPEN & allowed skin bacteria to enter my blood stream over and over! Sending me to ER repeatedly with a lovely hospital stay. No one at Kaiser made this connection, putting my life in constant danger.
Except for supplemental PT visits with the only Kaiser PT I do trust in general, all my LE treatment is being delivered by my non-Kaiser PT. She is the only one who knew what she was doing.
My latest chapter with Kaiser: I sent a question to Kaiser Member Services in August asking if it was possible to get the LE care I needed outside of Kaiser since they couldnt provide it. KAISER turned it into a formal Complaint which they promptly denied stating that Kaiser could provide the care I needed. Which they had not done in seven long miserable years. I appealed their Denial for the Complaint they filed supposedly on my behalf. They denied that, too, despite my submission of a 30 page Appeal complete with photographs, detailed data charts, and other supporting documentation. Medicare now has the complete file and I should hear from them in another week for their decision. I expect nothing from them either, but hopefully someone else may benefit from my experience.
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Stella... I'm incredibly sorry you had to go through all of that! I really appreciate you sharing that information here it will help many of us.
Is there another level of appeal? Or the state insurance commissioner? I have no idea I'm just grasping at straws on your behalf.
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Stella, your story is very interesting and informative. I think I may have some LE related pulling in my back, side and sometimes my arm. No swelling that the MO noted. He obsessed about cellulitis and told me the same thing you said - get to the doctor yesterday! I hadn't even thought about being at greater risk for it. He informed me that having 5 lymph nodes removed, even though the surgeon thought she was taking 3, moved me up to a Level 1 axillary dissection from a SLNB. I moved from Michigan to Washington state in June so have a new MO and his approach has been different. I'll keep watch on everything.
And your experience with Kaiser is distressing. And depressing. I hope you win your appeal and Medicare tells Kaiser to pay! Good luck!!
HUGS!
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Stella -- it sounds like you need a lawyer.
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Molly-looks like your precious DS had a great time, but that place really can wear you out. Wishing you some rest!!
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Ohsix, welcome! Praying that it's benign. Hope you can stay busy during this holiday season to keep your mind from going to dark places.
Karen, wonderful news on the clear mammogram. YAY!
Stella, I'm so sorry for everything you've been through! Hope Medicare comes through for you.
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Stella, how awful! (Lucky I’m at a hospital where my LE doc is a founder of LANA). I second the advice to seek legal counsel ASAP in case the statute-of-limitations clock for malpractice is ticking. Sorry I’m not licensed to practice in CA, and all my law school classmates there have retired.
My back is sloooowwwly getting better—I have reached the point where I’m using my rollator to carry stuff between rooms, which I couldn’t do while using a cane or holding on to the walls. Even though my singing partner is willing to do Sat. night’s concert solo (and would do a terrific job) the venue manager preferred to cancel & reschedule—reasoning that the audience was expecting the duo and there’s a monster snowstorm (with single-digit temps) forecast to start just before we’re supposed to drive down to the venue and that would probably negatively impact attendance. Silver lining is that by the next date our next CD will have been released. I should be fine by Tues. night to do the Holiday Hoot broadcast on WDCB-FM (90.9 Chi. area, wdcb.org streaming). 6-11 pm 12/13. Huge lineup—should be fun!
My little black princess kitty Heidi has a kidney stone, and she’ll be having surgery next Fri. She’d been spraying of late, and we’d all thought (even the vet at first) that it was an emotional territorial issue. But he did an ultrasound, et voila. Poor little thing—she’s on abx and painkillers till next Fri. The stone’s too big for external shockwave lithotripsy, so she’ll need to be ‘scoped. And since she’ll be on a special wet diet, we’ll have to feed her & Happy separately—she shouldn’t have access to his free-feed kibble and since he’ll eat anything that doesn’t eat him first, he shouldn’t have access to her food.
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Karen-how does Herceptin impact mammogram readings? Can you share more info? I had not heard that before but want to learn more.
On an unrelated note...why is it when someone famous is diagnosed (or worse, dies) of breast cancer...there is never specifics as to the type of cancer? I can't be the only one frustrated by this...due to my own personal quest of learning and needing to know? For example, the recent Jeopardy contestant who died before her episode aired. As a BC patient...I really want to know more for my own piece of mind! Media should be more conscious of this since there are SO many BC patients...and we read an article like that and wonder-was it ER/PR+, Her2+? How long has she been dealing with this? How did she find out about it? Was it too late at the discovery point to try treatment? Did she have a lx or Mx? Did she have chemo, radiation, hormone therapy? Now granted, the media wouldnt want to get overly detailed, not to mention the liabilty they could face sharing too much medical info, but give us BC sisters SOME info! https://www.google.com/amp/www.dailymail.co.uk/new...
I had Taxol #4 with Herceptin & Perjeta #2 today. Thankfully no riggers this time. Also had them cut back the benedryl drip dose so I wasn't so groggy. Feeling good so far, just some minor tummy icks & random/weird hot flashes. They almost didn't do the Herceptin/Perjeta because my Troponin level had gone UP to .10! It was.07 when I wound up in hospital a couple of weeks ago. But I felt fine today-weird. NP called my cardio doc to confer (who I had already met with after troponin hospital visit). She confirmed that unless the troponin gets to .20 she's not too worried because my heart passed all the other cardio testswhen in hospital last. So NP allowed infusion. I do have my 3 month echocardiogram on 12/21, so I'm sure that will be key in determining future steps.
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Totally agree that when a public figure (or even an ordinary citizen in the news) is “diagnosed with breast cancer" the media needs to be a bit more specific so as not to scare the crap out of or totally depress viewers. Guess “Pinktober" hasn't done a very good job of educating the public that there's no single disease called “breast cancer.”
Ms. Stowell had Stage IV colon cancer—no idea how long she’d been NED (if ever) before passing the on-camera practice-round audition for Jeopardy! but she did say after being informed that she’d passed the audition in July that she’d been given only 6 months to live, so they rushed her on to the show to tape in Sept. Supposedly, once one is at Stage IV of colon or another type of cancer, the disease can progress more rapidly than does Stage IV bc.
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- Some articles said colon cancer...while others said Breast. Which only adds to my frustration! I assume it may have started at breast & then wound up colon? But who knows...cause the media is not consistent or helpful!! Lo
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kdtheatre...I always wonder the same thing about celebrities....like Taylor Swifts mom. What kind of cancer does she have? And i just recently saw where Shannon Doherty has BC but no specifics. I guess there is a privacy law.
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Sandy, didn't realize you were having back issues. Crap. Glad you are improving and also glad that your performance has been postponed. Smart given your weather. Hope Heidi's surgery goes well. Keeping Happy away from Heidi's food and vice versa is in the realm of: Really? That's going to happen? I haven't worked that one out with the cat and dog who happily eat each other's food.
KDTheatre, great news that you did so well after the last round of chemo. You have to be relieved! I'm with you on wishing the media were more explicit. But there's also the patient's right to privacy and to not divulge anything. I had heard that the Jeopardy gal knew before she tried out for Jeopardy that she had a life-limiting diagnosis. Kudos to Jeopardy for making sure she could appear. Any money won was going to a cancer charity. Very sad. I don't recall hearing what kind of cancer it was.
HUGS!
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Happy Friday y'all
ohsix23....welcome this is such a great place to be ..darn that you have to be here though! My incisions was on the side and no areola was cut into..but my nipple has been very tender I guess that's part of our battle too! I'm sure you are very frustrated.
Kathy ..be cautious and don't over do. Yesterday was week 4 and I over did lifting what I shouldn't and paid for it last night. I have no scar tissue and I'm not sure how do you tell if you have scar tissue?
KarenC...so sorry about your back at work. I have such a bad back I can't imagine adding that to your recovery while back to work. Mine has been behaving since all my cancer treatments.
Stella...your treatment from Kaiser is so wrong. Glad you are getting the right care now.
KDTheatre....that's exactly why I had no idea there were so many types of BC...I had assumed BC was just BC ... Never realized when my doctor said Triple Negative that wasn't what we all had. Learning every day of this journey.
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Sandy, I, too, didn't know of your back issues. Sometimes I think I miss a couple of posts. So glad you are beginning to see a little relief. Be careful!
Rads is moving really quickly (I thought it would seem like an eternity. Skin is doing really well. I now only have 2 1/2 more weeks and that includes the boosts. Lots of projects with the holidays, but I find I run out of steam in the afternoons and just have to take a nap. Am so tired of being tired. If that's the worst SE, I'll count my blessings. I know some people have it so much worse.
KD and all. what amazes me is when the media simply says someone has cancer like there is just one overarching name. I guess you're right that it's a privacy issue. I was at radiation on Tuesday and the machine broke on the patient ahead of me. We were waiting, and he volunteered that he has jaw cancer and was also doing chemo that same day. The techs wound up sending just the rad patients home and said they would call us when it was fixed. As I went out to my car, I noticed the same man standing on the sidewalk smoking. I was so surprised, but I guess some people figure if they already have cancer, they need not stop smoking. I've never smoked so don't know how hard it is to stop.
Hope all are doing well and have a nice weekend!
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I guess celebrities have a right to privacy, I don't know. I do always wonder about things like this, but the reality is that even if somebody has the exact same cancer as I did, their story is not my story. There's women with the same diagnosis as mine at the same time as mine who've already progressed to stage four or even passed, and there's other women with much more advanced diagnoses than mine that have been NED for 15 years!
I don't know if I told you guys but a couple months ago I was on a local tv show in Toronto, I was being interviewed about parenting with breast cancer and the woman being interviewed with me with stage four, but very stable. I thought she would be around a long time, I'm not sure what happened to make things go downhill so quickly but she passed away yesterday. Obviously that's very upsetting and scary for me, my mantra continues "it's not my story".
http://www.cityline.ca/video/courageous-moms-of-cancer-share-their-parenting-styles/
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Lovestofly.....thanks for sharing the video. So sorry to hear of Michelle's passing. Great advice about how to help people...it's always a tricky situation for me. Wanting to help but not always knowing how.
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Jill, my you look beautiful. And you did such a good job in that interview! I can see why you were blindsided by Michelle's passing. A friend with Stage 4 passed from a blood disorder that is not uncommon with BC (I forget the name).
HUGS!!
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Great interview, Jill. You look terrific and gave great advice. But as I watched Michelle, it was such a shock to know that she’d be gone in just a little over a month—she seemed so vital and animated.
Peggy, I usually forget I have spinal issues, except every 2-3 yrs or so when my cervical or lumbar spine gets “angry.” (Diagnosed at 27 with OA of the C-spine and at 31 of the lumbar). I also was dx’ed at only 12 with scoliosis—by then I was too old (and fully grown) to correct it by body casting, but it’s fairly mild. Only way to tell I have it is if I’m wearing something that buttons or zips down the front and I’m also wearing a pendant: the pendant hangs “plumb,” but the zipper or buttons are skewed to the right. Gave me trouble when in pre-op for my first knee replacement and they tried to give me an epidural. I felt like my spine had been struck by lightning—good thing the needle didn’t go all the way into the spinal cord itself! They had to fluoroscope me so they could see where the epidural space was—and they knew to do that a year later for my other knee replacement. Oddly, when I got an epidural before my C-section in ’84, the anesthesiologist hit the “sweet spot” without radiographic guidance.
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thankseverybody! I didn't really stay in touch with her after the video, we were Facebook friends with each other that was it. So I really don't know what happened but on the day of taping she said that she was stable and had scans recently
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Sandy, DH had scoliosis too and nothing was ever done for it. Unlike you, he was in constant pain for it and had degenerative discs on top of it. Had surgery for the latter. Didn't help much. He had several epidurals for the pain. They knocked him out to get them so I don't know how they looked that sweet spot. He was never sore from them, however. Scary thing when they stick things in your spine.
HUGS!
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KD, my BS never elaborated on the Herceptin/mammogram readings other than to just say that the Herceptin could interfere with the reading. I have not found one article which mentions that at all so I wasn't too worried about it at this point. I will be done the herceptin in April and I will see him again then as well.
I too was totally taken aback to find out all the different breast cancers ....I had no idea. I even thought if they removed it with clear margins then I wouldn't need any treatment. Boy was I wrong.
I have read that Herceptin can cause lower back pain so that could be contributing to my sore back at work too. I'll have to ask my oncologist about it when I see him in January.
Jill, you did great on tv. So very sad about the other mom. It breaks my heart seeing her with her little boy and knowing she has passed. So very sad....
Dara , I hope you do well in your last few weeks of rads! Napping was a great relief during them and compared to chemo it did go pretty quickly! I found a lot of 'waiting' with chemo between treatments!
No snow here yet other than a tiny bit which melted today. I have a feeling we will get lots soon enough!
Enjoy your weekend everyone!
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Karen and KD, I have been a nurse for 39 years but you could have put everything I knew about breast cancer in a thimble. Oncology is soooo not my forte. But I really thought BC was BC. I didn't know anything about hormone receptors. I didn't know the difference in DCIS and IDC. I had never heard of Luminal B. My sister had "a little bit of BC", as she put it, and had rads and Arimidex (turns out she had a 2mm DCIS.) So when I came up with IDC, I assumed that would be my path, easy-peasy. Until my pathology came back ER+PR-, which is a more aggressive time (luminal
. So, I had four rounds of TC and lost my hair. And then I lost my breasts. So much fun.This whole thing has been a learning experience. I've come to realize that BC is a different entity in every person. There is no one road to health. I can't compare my path to anyone else's path. I have to say, BC has opened my eyes and made me a better nurse.
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Poodles, I'm with you. I thought BC was BC. And after finding out that wasn't true, I thought that if you had this type then you had that treatment. Easy. Who knew there were so many different approaches to treatments for the same diagnosis? What a confused disease.
HUGS!
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So kind of a tech question... Is anyone else having problems with the site not recognizing your login? All of a sudden about a week ago, I'm getting logged out and then I have to reset my password every time I come back to the threads. I didn't do an update or anything. I have a MacBook Air and have tried everything. The Mods submitted a ticket for me, but so far I haven't heard any ideas. Thanks...
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