Mastectomy Sept 2011
Comments
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LInda, the numbness in the armpit is creeping me out too. I finally managed to touch the chest this past week, and I am able to wash etc, but shaving would be tricky for me as well. Right now there is no hair in my armpits, but I was thinking of using hair removal cream. You scrape it off with a doo-dad, and somehow this seems easier to me.
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Momime, I also thought of waxing. I think there wouldn't be much pain with it! LOL! Are you doing chemo right now? The armpit hair came back later for me than the legs or head, so at least that was kind of nice.
It took me a long time to look at my chest, and a lot longer to touch it, but I had a great physical therapist who did myofascial release for my cording, and worked on the scars as well to try to keep them from getting too tightly adhesed to underlying tissues. She got me started, and now I am able to apply vitamin E cream to them, and I am still pretty sore (maybe because I had infected seromas) but she said massaging the area is good to help it heal and keep the skin and scars soft and pliable.
I don't know if I told you all, but I bought some boobs last week, and found they actually provide a buffer zone for all the "huggers" in my life! I wasn't too concerned about how I looked, but I actually DO look a little less thin with just a little prosthesis. And they also seem to add a little insulation as I am constantly cold! I was actually kind of excited when I found that they actually felt good!
Thinking of all of the rest of you tonight. I hope the chemo ladies are feeling better, hoping the reconstruction ladies are getting through the procedures and doing well, hoping work is going well for everyone who is back at it, and hoping everyone has a good day.
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Linda, I hear you on the foobs as buffers, lol.
Waxing I can't handle. I tried a teast strip on my leg years ago and it took me an hour and a stiff whisky to pry it off. I finished chemo almost 4 weeks ago, and am getting some stubble on my legs, but nothing in my armpits, which, as you say, is pretty nice. I have also seen that for some women the pit hair never really comes back in force. That would really be nice.
It was my PT who helped me get a little more used to the icky feeling on the chest too. Just this past week, almost 4 months out, I was finally able to put some oil on it. I use jojoba oil, and it does seem to help a little. I also think that some of the tight feeling is from light swelling. It goes away after a PT session, then it comes back when I can feel swelling elsewhere as well.
Now I am mainly hoping to be rid of the SEs of the taxotere. I still have swelling and vein inflammation. It is getting a little better, but ever so bleeping slowly. I also have neuropathy in my right hand, in the fingers, and that is incredibly annoying. The doctors are not impressed, because to their Greek eyes I am amazingly thin and physically active, so they are convinced that I can't be having problems with veins and swelling.
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Momine, keep a watch on the neuropathy. There is a phenomenon called "coasting" where you can have symptoms that worsen after they seem to be better. If they get worse, get your doc involved EARLY to get symptom relief. It took me 6 months to get my PCP and MO to help, and I ended up self-referring to a medical toxicologist who was willing to work with me.
I now have a new PCP, and am not sure how long to follow up with the MO as I think my new PCP could do just as well. I have asked my MO to file a report with the FDA about my neuropathy because the numbers of people affected is tremendously underestimated - the docs just don't want to file the reports because it is a lot of paperwork, so these "post-marketing" effects just don't get counted. I am persistent and insisting she do this, and she says she will.
And I know what you mean about the veins and inflammation. I have a lot of problem with inflammation of the vessels in my eye, which cause a lot of discomfort, but so far no vision problems. I read an article yesterday that came out in Aug 2011 that reviewed all the known eye problems from chemo and hormonal treatments and also other drugs used to treat breast cancer. It was very interesting, and the bottom line is that there are lots of eye problems that occur as a result of treatment, but that there is so much overlap with age-related changes that a lot of the problems from treatment get attributed to age and therefore there is no information in the drug prescribing information for the docs, so they can't even tell us about them. If you want to read it, go to http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3205820/ .
Geez, I got long-winded tonight. Sorry. Best wishes to everyone for continued healing, and may your night be free of pain and anxiety.
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MargieC - Just wanted to wish you well tomorrow!! It is your turn to join the squishy club!!! Please let us know how you are doing..... ((hugs))
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thanks odie16 -- I am excited and nervous. But I will be soo happy to have the TEs out.
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Don't worry, you will feel much better when you wake up without the obnoxious brick TE's... Sending you positive energy and will be happy to answer any questions....
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Best wishes tomorrow, Margie!
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Good luck, Margie! Never had the TE's, but I'm quite used to my implants now and they're quite nice.
Caryn0 -
Thanks Linda, I hear you on the under-reporting. Last time I saw the onc's assistant, I was 3 weeks past last chemo, and her attitude was that I couldn't be having SEs anymore, because the stuff had cleared my system. Meanwhile, my mother still has neuropathy in her feet, and her last taxotere was 4 years ago.
The vein inflammation is not specifically in the eyes, it is everywhere, arms and legs mostly. It is now finally getting a little better, but was quite extreme. I use heparinoid creme on the arms. As I understood it, the inflammation from the tax is what caused the cording I have.
How do they treat the neuropathy if it persists?
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Momine, there are lots of options for relieving symptoms of the neuropathy if it persists and I will PM you with more info.
Caryn, it sounds like you have "turned the corner" and are doing a bit better. I sure hope so as you have been through so much. Glad you are pleased with your implants. I'm sorry I can't remember, but did you have the immediate implants?
Waiting to hear news from MargieC.
Hope everyone else is continuing to heal.
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Thanks,Linda. I am doing more than bit better. I feel fantastic and am very excited about returning to work next Tuesday. Yes, I had one step and they look great. I bought a "back to school outfit" today and am pleased with the new me. Take good care and hope you're well.
Caryn0 -
Hi all. I made it through my exchange surgery ok. There was one complication. They couldn't find a vein that would hold up for my IV I was wide wake in the OR 30 minutes while they poked me 3 times in the right wrist/hand, 2 times in the right foot and 3 times in the left foot to finally get the IV going. I have a port and I was getting frustrated that they wouldn't use it (something about the OR team is not trained to access them). I believe my PS is going to say somethingvto the hospital about what happened. He was also getting frustrated watching me lay therevwith tears rolling done my face. He has always calls me his little animal because of my pain threshold.
I can't wait to see the new girls. Right now I have on a surgical bra and I am not remove it till myvfollow up Thursday.
For those of you yet to have your exchange it can be a bit harder then the doctors tell you. it is a relief to get the TE out, but I am in more pain right now then I was with my BMX. PS went in this time under the breast (BMX scares had healled really nice and the skin was very thin there and he didn't want to mess them up). I still have feeling under the breast so that is why the pain is worse.
I am just glad this part is done.0 -
Oh Margie so sorry to hear about your IV experience - that just sounds awful! Also so sorry to hear about the pain you are in now. My 2nd recon was more painful in the breast area, too - and I think that was because I had regained most of my sensation after the BMX. Glad it is all over for you, too, and you are on the road to recovering and moving forward.
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BTW all, I receiving some shocking news yesterday. As you all know, I've been contemplating radiation (jury is still out on that, but I think they are going to recommend no radiation - will get final word later today). Well, my 3rd opinion facility did their own review of my slides as part of their analysis of my case. They took my case to the tumor board and low and behold, all those eyes on my slides found a small (3 mm) area of invasion on the left side. So now I am officially Stage T1A. The MO says I now need to go on Tamoxifen.
Can you believe I am just now getting this dx 4 months after my BMX, and after 4 pathologists had looked at my slides? I'm really starting to question the thoroughness of pathologists. I mean, I know it was small and these things can be missed, but I'm just a little po'd right now as I've delayed being treated properly for 4 months. Grrrrr....
I started a thread on the Stage 1/2 board, but if anyone has any input they'd like to share, feel free. They haven't recommended chemo - what tips the scale on that? (I don't want chemo, trust me. I just want to understand why not and was too shocked yesterday to ask the right questions.)
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Dancetancer, you most likely do not need chemo because (if I read your information correctly) your carcinoma was in situ, not invasive, and no nodes positive. Tamoxifen is sort of like chemo, but it is in a class called selective estrogen receptor modulators, which means it binds to the estrogen receptors of breast cancer cells and keeps them from being "fed" by the estrogen that your body produces. I am assuming that at age 43 you are considered pre-menopausal, so your ovaries are still producing estrogen. Tamoxifen will block the cancer cells, but you still get estrogen effects at other cells. Your doc might want to reduce estrogen production by the ovaries, which is another approach. The thing is, they know radiation, chemotherapy, and tamoxifen are all very good at treating breast cancer, but they don't know which of the 3 any individual cancer will respond to, so they use the shot-gun approach in many cases, and that can lead to a lot of adverse effects that aren't always necessary. So when the cancer is localized, is hormone receptor positive, the tamoxifen by itself can be absolutely effective. In retrospect, I sometimes wish I had just gone with the tamoxifen and no chemo because I don't think the chemo did what it was supposed to do as I had recurrence 6 months after finishing chemo, so now am on the tamoxifen and hoping it works. But no one could predict whether my cancer would respond to chemo or not, and it was a grade 3 on one report (rapidly growing) so would probably respond. Also, some MOs are using OncoDx to estimate likelihood of recurrence and response to chemo, so you might think about that. Radiation essentially reduces risk of local recurrence, but in a lot of cases, does not increase survival time, although that is under a lot of debate right now. Sorry if this is a little long, but I wanted to be sure it is accurate and balanced, as best I know at this time.
Also, I don't trust much of any of the pathologists, surgeons, tumor board, and maybe even the MO and the whole crew.... so am very much at peace with my decision to do BMX with the recurrence even though the BS did say she didn't recommend removal of a "healthy breast" but she did get the insurance prior approval for it, and did a great job with that side. She is technically very good, highly recommended, but I am a difficult patient for her. Ah, well, into every life there has to be a few challenges....
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Margie, glad you are through to the"other side" and hope you are feeling better. Sorry about the IV problems. I am a needle phobic so that would be my worst nightmare.
Dancetrancer- don't know much about this except this bc bugger is sneaky and seems to do all sorts of unexpected things. Linda has a good suggestion on the oncotype dx, if you're eligible for it. Thinking positive thoughts for you.
Caryn0 -
Hello friends! It's been waaay too long since I've read up on the board - lots happening. SO excited for those who've finished chemo - and Olga, no scans is weird and scary, but it's the way of the post-cancer world. There've been studies that show that screening doesn't extend life in the case of mets, so the std. of care is to wait for symptoms (and sometimes you get "lucky" like Caryn).
Caryn, I'm SO excited for you to get BACK TO WORK. Finally! It's going to feel so flippin' good after all this time. Hoorray!
Margie - glad you're done w/the exchange, but sorry that it's been rough for you. That IV thing is nightmarish. You are an animal - I would be beyond crying, I would've been yelling at everyone to put me out, dammit!
Lorraine - what?! Argh. All I have to say is, bravo for your moxie and drive to get more info. - were it not for that, you would never have known this. When I was first dx'd I heard a story of a woman who got a second op. on her pathology and found out there were 2 types of invasive BC in her breast, each of which required a different chemo protocol - and if she had gone w/the original plan, the more aggressive of the two would've gone on growing (likely) unmitigated. Scary stuff. Pathologists are only human, and we all screw up, and some of us are better at our jobs than others. It's too bad we can't pick the pathologists, too, right?
Things here have been good. Back to exercising 7 days/week, have strained my bum knee doing curtsy lunges, am tired from schlepping DD to sell Girl Scout cookies - feeling very "back to normal" in most ways. I too have little feeling under my armpits, and that does drive me bonkers w/shaving, etc. (feels like rubber band or something, so hard to describe) and today and the gym when I was doing bicep curls, I realized I was bonking into my foobs & not noticing it for a while - anyone watching me must've wondered what the hell I was doing . . . .
Trying to assimilate this whole experience now, and yesterday started a class aimed at figuring out whether to write a book (finally) about cancer and how it's shaped my entire adult life. The genre is crowded, though, so I might stick to cooking and cleaning!
Hugs to all,
Sarah
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Linda, it was in-situ before this latest pathology analysis, but they now have found a 3 mm spot of IDC on the most recent review of my slides. Thank you for the information on the Tamoxifen and for sharing your personal experience with it and chemo. I have a call into my MO to find out if it is appropriate to test my IDC for HER2-neu and/or oncoDX - not sure if it is even appropriate with this small amount of IDC.
Thanks everyone else for the encouragement. Hope you all are doing well!
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Sarah,
Good thear from you. Only those of us with bc could understand your comment about me being lucky to have a bone met found so early. That made me laugh and I completely agree with you. I do, indeed, feel lucky. Starting to feel bit stiff when I wake up, but that goes away as soon as I start moving around. Hard to say if it's an se from Arimidex or just being 55! Still, I feel great. Hitting the gym almost daily, eating well and looking forward to my 26 little pumpkins next week. Pretty good for a gal with bc!
Caryn0 -
Caryn - if it makes you feel any better, I'm 42, not on Arimidex, haven't had rads to my hip, and I'm stiff every a.m. (but it goes away too). You sound awesome - can't wait to hear how it is to be back w/the kids! They'll set you straight, for sure.
S.
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Dancetrance- my understanding is if you are ER 100% you automatically go on tamoxifen. I have been on it since November and no SE. I am very grateful I can take this small measure to prevent reoccurance. I am still incredibly nervous being Stage IIb and no chemo so I will do everything else I can to stay breast cancer freer.
As for me.....guess what I did last weekend...the Disney Goofy Challenge- 1/2 marathon on Saturday and a full Marathon on Sunday- 39.3 miles in two days! I ran/walked and timing was horrible but I finished! My niece did the half with me and this year there was a relay for the full. My sedentary sister who 10 weeks ago did no exercise ran the first half with me. I had to pull the cancer card for her to do this but she is so proud of herself (me too). My niece did the second half of the relay with me. At mile 17 I could run no longer and we walked really fast the rest of the was and had a blast. We took tons of pictures, met lots of characters and had lots of strangers cheering up on.
We are doing this again next year and since I could not do the NYC marathon in 2011 (stupid mastectomy) I am in for 2012!
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Thanks groovygirls - my docs told me with DCIS only and BMX, no Tamoxifen was indicated. Now that I have a small spot of IDC they recommend the Tamox. So that's the difference! So glad to hear you have no SE...hoping for the same for me!!!
And wow, you blow me away with your marathon'in!!! You go girl!
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Tamox only if you are premenopausal. An AI if you are postmenopausal, like me! I am 100% ER positive.
Caryn0 -
Checking in and see lots of updates...
First off, Dancetrancer - Boo on the IDC but glad it was found now so you can take precautions & get appropriate treatment now. Welcome to the tammy train.
Groovygrls - Way to go! You and your sister should both be proud.
Nice to see things are getting back to "normal" for us now. Sending hugs to everyone.
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Hello everyone
I'm in the December chemo group doing pre chemo b4 surgery, just a quick question did anyone get expanders then have radiation? Just trying to get some idea of things b4 meeting with surgeon, will have BMX after chemo b4 radiation
Thanks
Cindy0 -
Thinking of all of you tonight. FLislander, I can't answer your questions, but I know there are a couple here that should be able to help.
Wondering if anyone has needed to take time off work after going back? Several of my health care team have suggested I take time to heal - I only took a week off for surgery - just could not bear to not be with my students (and they are adults, so it wasn't as if I had to be physically active like you have with grade school students) and I just plugged on. I am so tired. Tired of SEs from surgery and meds. Tired of pain. Tired of feeling bad. Tired of looking good every day at work, getting lots of compliments on how great I look and act, then coming home with no energy left to even THINK of getting exercise or fun for ME. And yet I just cannot think of giving any of my classes up. I just feel like I am in a lose-lose situation and it has nothing to do with BC, just the after-effects of BC. Thanks for letting me whine a bit. Usually I am pretty upbeat and energetic, and I just can't seem to get it back these days.
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Linda I took a full 5 weeks off after my BMX. I have no idea how you only took one week off. You've never had a chance to rest and heal! I say if you can take some time for you, DO IT. Pamper yourself, rest, reflect, HEAL.
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Linda I took a full 5 weeks off after my BMX. I have no idea how you only took one week off. You've never had a chance to rest and heal! I say if you can take some time for you, DO IT. Pamper yourself, rest, reflect, HEAL.
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Linda,
I didn't realize you had taken so little time off. You need to recuperate, my friend! My bs said 3 weeks off with no recon, 6 weeks with recon. I know how hard it is to take time off of work, especially if you love your work. Due to my complications, I have been off for 3 months but am returning tomorrow. I really think adequate rest is essential to healing and sometimes we push ourselves too soon. You deserve some time to pamper yourself!
Caryn0
