Mastectomy Sept 2011
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Thanks all - I had a big, good cry about trying to make my decision on rads last night. Started thinking - if I were to die from either cancer recurrence or heart attack, I'd rather it be heart attack since that happens later (typically 10 - 15 yrs post rads) and would give me more time. Somewhat melodramatic, since risks of both are most likely not huge, but it is a thought I had pushed to the back of my mind...I finally let it come to the surface. Now leaning back towards doing rads. Waffle, waffle, waffle! 3rd opinion appt FINALLY set up for late next week, though - and also will be having 2nd appt with RO here to pick her brain some more. Looking forward to getting these appts over with, making a decision, and having closure, one way or the other.
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Thanks all - I had a big, good cry about trying to make my decision on rads last night. Started thinking - if I were to die from either cancer recurrence or heart attack, I'd rather it be heart attack since that happens later (typically 10 - 15 yrs post rads) and would give me more time. Somewhat melodramatic, since risks of both are most likely not huge, but it is a thought I had pushed to the back of my mind...I finally let it come to the surface. Now leaning back towards doing rads. Waffle, waffle, waffle! 3rd opinion appt FINALLY set up for late next week, though - and also will be having 2nd appt with RO here to pick her brain some more. Looking forward to getting these appts over with, making a decision, and having closure, one way or the other.
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So much news from everyone. My brain is a bit fried but my thoughts are with you all medically, emotionally, physically, financially and in any other way you need a lift. I am on my second week of rads to my hip lesion. Skin looks good due diligent use of aloe vera gel and Aquaphor. Did have a bit of intestinal distress aka diarrhea but not bad. The actual treatment is so quick that I spend more time undressing and dressing than I do on the table. Everyone at the treatment center including my RO are beyond nice! Chest x ray (the last) yesterday revealed that my lung is still inflated!! I have never been so happy, because, trust me, that chest tube made drains and surgery look like a walk in the park. Will start my monthly Aredia infusions on 12/20 and continue to have no problem with Arimidex but have only been on it for slightly over 2 weeks. Went back to the gym on Sunday and will head over there after rads this morning. Taking it slow but beside the positive cosmetic effects of exercise, I feel it is critical to keeping bc at bay. BTW, I've almost entirely cut sugar from my diet (bye, bye yummy cakes and cookies) and shed 5 lbs. from my already petite body. My foobs now look bigger! Love to all, Caryn
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Good for you Caryn! I'm so impressed with how you have done things since your diag of bone mets. I however cannot get the sugar monkey off my back. I guess my body is telling me it would rather die early from BC than live w/o sugar. I wish there was an anabuse (? spelling) pill equivalent for sugar that would make me violently ill every time I hit the cookies and ice cream. Bleah.
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DT, so with you on that emotional low on deciding about rads. I find it so hard to make a rational decision when I beat the odds by getting BC at 43 w/no family history, no genetic reason, no known risk factors. I feel like I'll continue to beat the odds and have all the complications that come with all the treatments. I know this is not logical thinking but my emotions are running the show right now.
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Ok, this is rather nit picky, but I don't have bone mets. I have a single 2cm met. Indulge me, please. It makes me feel better and actually makes my prognosis less grim.
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Checking in and boy has it been busy..
Tina - Boo on the water heater!!!I I agree with Sarah that we should get a pass on crap for a year at least! Hope things take an uptick for you soon..
Caryn - Nit picky? Oh please! Whatever works for you & makes you feel better is the way it should be..You have been thru so much yet are an inspiration with your attitude...
rk85 - I totally can relate since I have no family history or risk factors either. What crappy luck huh?
DT - I am sorry you are having a hard time with rads decision.. Do whatever feels right to you...
MargieC - Squishies... They are much better than the TE's and soft. Look natural, perky and overall pretty good. Almost forget about them once for a minute or two every now & then... However, they aren't the same as my old ones. Seems to fit in my old pre-BC bras and look fine in clothes but just seem different sizewise. More round/less projection. I know that seems stupid but I am not sure my stretch sweaters will look quite the same. Regardless, I am very pleased overall (just occasionally nostalgic or hormonal at moments...lol)
Had my annual ob/gyn visit today. First since the dreaded telephone call from her in June. She was really sweet and compassionate. She did check the new foobs (checking for skin mets) and commented that the ps did such a good job, she wouldnt know they werent natural if I hadn't told her. Warned me what to watch for due to the Tamoxifen and encouraged me to call with any concerns. With any luck, I am done with doctor visits for the rest of this month.
Hope everyone has a good week and finds some peace during the holiday season. If only I could get myself in the spirit. (funny but the material side of the holiday doesn't matter so much anymore)....
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Lorraine, I know what you are going through. I spent days crying over the decision about rads. BS and MO and RO all said do it, my PCP supported my decision not to do it. I have other health issues that will probably kill me before BC does, and I am just plain tired of treatments that may or may not work, and the very well-intentioned docs cannot predict benefits or risks for ME - just numbers and estimates based on populations. Except the RO did guarantee that I WOULD have skin damage and lung damage and could NOT guarantee no recurrence. And, like rk85, I seem to get every SE from every treatment I have had, so am just more trusting of my gut feelings than I am of kind reassurances from my medical team.
Went to ortho today and I have plantar fasciitis, not Achilles tendinitis. Although it will take some time to heal, at least I am no longer worried about tendon rupture! So maybe in a few weeks....
I am continuing to have a rug-burn pain along the inner upper arm where the nodes were removed and am nearly going crazy with it because it feels irritated with every minimal motion of the sleeve against my skin. My incision area still hurts, much worse by the end of the day. Is this normal? I haven't talked with my BS since October, wondered if I should call her, but don't really want to see her - am sick and tired medical appointments.
Hugs to all tonight.
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Thanks everyone for the encouragement, empathy, and virtual hugs!
Linda, I don't know if incisional pain under the arm is normal still at this point, but I wouldn't think so - hope it feels better soon!
Odie - wow, what a great thing to hear you ob/gyn say - very happy for you!
Caryn - so glad to hear rads is going well for you so far. And I am quite impressed you lost 5#. You've got some will power!
Sarah - thanks for the advice and empathy. It's rainy and gray all the way down here in Alabama, too. Quite a chill in the air and makes me wanna sit on the couch in my sweats all day, too.
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Just wanted to stop in and say hi to my girls...
DT - Hope you have found some peace with whatever decision you made.
Lynda - I really hope you had the incisional pain checked and that it is better now.
Olgah - Just thinking of you and hoping you're doing well.
MargieC - Hope you are caught up in the season so it will fly by and next thing you know, it will be time for squishies!!
Happy Friday to everyone...
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Hey, new here but jumping in. I had a double mastectomy in mid-September. I still have pain in the incisions and pins and needles in the back of the arm and in my back on my shoulderblade. It can be quite irritating. Are you seeing a physical therapist? I go to one weekly for massage and it really helps me feel better.
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Happy Sunday, everyone, and welcome to Momine. I do see a PT and I feel much better for it. I'm sorry you're still having pain & pins and needles - I have very little discomfort at this point, but do get tightness when I don't stretch on a daily basis. The PT has gotten my range of motion back and does a lot of scar tissue massage and manual lymphatic drainage (I still have minor post-op swelling). I feel like a million bucks walking out of her office every week!
Feels like a long time since I've checked in. I have overdone it in the last week and Friday forced myself to stay on the couch all day (w/the exception of going out to get some holiday nails - DH's office party was last night). I even caused myself to swell up again . . . guess amping up the daily workouts (including getting back to spin, which felt awesome at the time) + holiday prep + Brownie field trips +++ = a little too much, too soon.
Feeling better today, despite being on my feet in heels for hours last night, shmoozing - so THAT'S encouraging.
Hope you're having a relaxing weekend,
Sarah
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Thanks for the welcome, SAO. How do you stretch the chest? That is where I have tightness and numbness a lot, and it is very uncomfortable. Nor does it seem to have improved much since the surgery.
Does anyone use any creams, like vitamin E or hirudoid cream, specially to loosen scar tissue in the incisions?
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Hi momine,
Did you have reconstruction? What does your doc recommend in terms of preventing scar adhesion? A pt is a great help even if it is just to teach you post-bmx exercises and lymphedema prevention advice. Sorry you have to join us but welcome. Caryn0 -
Thanks for the welcome, Caryn. No, I did not have reconstruction and do not plan on it. My surgeon said I would have to wait, even if I did want it, because I still need radiation.
I would love to know what to do about the scars and adhesions, because my chest is numb, stiff and tight and I have fairly nasty cording on the side where they took lymph nodes. However, my surgeon has no advice for me and only told me that I should have no problems. I have tried to ask them, but got nothing.
The PT is my best support right now and she is working on the cording.
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Momine, welcome to the group! Has your PT given you exercises to do at home? If not, ask her for a home exercise program - doing stretching in between sessions makes a huge difference.
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Hi and thanks, trancer. Yes, the PT has given me some exercises and I do them most days.
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Momine - I found a pub from the Canadian Cancer Society that has the exercises I started with - the chicken wings, wand and snow angels were the most helpful for me for stretching out the chest. Shoulder rolls & shrugs, and simple neck exercises like looking left/right and nodding up down and moving the head side to side (ear to each shoulder) also have kept things loose. I have found that doing all the stretches has really helped make me feel more like myself . .. so hopefully you can loosen up those incisions and feel better, too!
Sarah
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Momine, welcome, and thanks for sharing. I also had pretty bad cording initially, but with PT I am much better. I do have symptoms quite similar to yours. I am using cocoa butter with vitamin E in it, and it does seem to help soften the scars maybe, and at least makes the skin nice and soft! Also, have been doing a little more self-massage of the scars, even though I have numbness and soreness, but the PT showed me how to do that, along with "stretching" the skin very gently while stretching to help with the cording. I have been having horrible problems with pain in the back of my arm and around the shoulder by the end of the day, and discovered that I had minimal problems today as I took the entire day off and didn't do ANYTHING! Using the computer or working in the kitchen seem to aggravate the arm as my sleeve touches it and rubs up against it, but now that I know rest helps it, I am a little more encouraged.
I am also not doing reconstruction, have scheduled a boob shopping trip on Tuesday. Actually, the BS sent request for me to get fitted for prostheses and bra.... not sure how excited I am about this... sort of smacks me in the face again that I have to deal with an altered body and its altered sensations. But I am also wanting to be able to wear a slinky holiday dress without looking like a 10-year old. But it has also been so easy wearing loose-fitting layers and not having to worry about a bra at all.... so much to consider.... do I go for the old A or maybe a C or DDD???? Do I go for silicone or lighter weight? And I didn't realize there were so many geometric shapes to consider! And some information I found online said you should go meet the certified fitter BEFORE surgery.... oh, well.... I couldn't get every detail taken care of beforehand. So shopping I shall go!
Caryn, hoping you are feeling better in general. Sarah, glad you are recovering from the social whirl.... gee, seems like a long time since some of us were able to party hearty and still function the next day! Hugs and warm wishes to all the rest of you tonight.
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Welcome Momine... I didn't have pt so I am glad some of the other girls could help you...
Caryn - So glad to see you doing well.
Sarah - Glad things are a good busy for you lately, just take it easy as needed.
Lynda - Happy shopping!!
Had a good weekend putting up the tree & doing some holiday shopping However tonight I noticed that sometime in the past 24 hours, I have developed a pea sized visible & palpable lump next to the incision line on yup, the cancer foob. Was not there earlier in the week when my ob/gyn did the breast exam.... Trying not to freak but am scared. Will call the PS in the morning to see if he can work me in and hope it is scar tissue or a wayward stitch. Wish I could make myself believe that......
Hope everyone has a great week.
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Odie, take some deep breaths, we will be there for you! Very likely nothing bad, but get it checked and let us know. And remember to breathe! Special hugs and prayers for you tonight.
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Thanks, SAO, for those exercises.
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Hi Linda, yes we seem to be close to being cancer twins here, in terms of timeline and DX. Thanks for the info.
As for the boob shopping, don't let anyone push you around. The amoena rep who came to see me in the hospital (arranged by my surgeon) made it sound as if silicone foobs was the only real option, but after I checked around a bit, it seems that many women use foam and other solutions that are both a lot cheaper and a lot lighter. I went to the online store of the American Cancer Society and ordered microbead foobs from there. I haven't gotten them yet, but they looked like a good option.
I used to be really small, but with childbirth and weight gain, I was up to a C in the last few years. I hated it, so for me the choice is simple, small, small, small.
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Odie - keep us posted - so unlikely it's anything sinister . . . but I know you can't help but worry. I'll be thinking about you!
Momine - let me know if you try the exercises and how they are - great that you and Linda found each other. I have heard from friends that the silicone inserts are REALLY heavy and very HOT when the weather is warmer, so Linda, you may want to shop around, as Momine suggests.
I was back at it w/the exercise today, trying to be very moderate. Then I just spent 45 minutes getting dinner into the Crock Pot - the joys of being able to cook are still here for me. But I'll admit that Crocking is weird some days - my kitchen smells like chicken, sausage and white bean stew already and it's only 11 a.m. here?! Garlic-o-rama. Hopefully this'll be delicious - new recipe.
I hope everyone's week is off to a decent start,
Sarah
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I think the silicone jobs are the way to go if you have to match an existing boob, both looks-wise and in weight. But when you have zero boobs, that consideration is irrelevant.
I am 3 months out and still wearing the featherweights I got in the hospital. I baste them into a regular, soft, cotton bra and it works fine. The only thing is that the edges of the foobs do not merge that well with your chest, so they may look a bit funky under a tight sweater or T. But with most clothes it is really not a problem.
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Sarah, Love your post it smacks of normalcy! Never thought I would crave normal as much as I do now.
Linda- hope your discomfort continues to resolve. The skin on the underside of my upper arm(node dissection side) was very sensitive to to the touch of most fabric for a while. My pt showed me some light MLD massage and how to gently stroke with different fabrics to de-sensitize the skin. Almost back to normal now.
Odie- It's probably nothing but I know the worry it creates.
This is my last week of rads to my hip. It hasn't been too bad but I did get hit with fatigue and intestinal distress around treatment # 8. Not bad and only 5 to go! I start monthly infusions of Aredia on 12/20. Am also very excited about the news on Affinator plus an AI as it relates to women in my position. BTW, no se's from Arimidex yet! Hope you all have a great week. Caryn0 -
Odie - thinking of you as I know this is stressful - you can't help but worry - hoping you get some answers soon!
Sarah - the soup sounds very yummy...what time is dinner?
Caryn - happy to hear rads is almost over for you - another big step! And that is so great no SE from Arimidex yet!!!
Wednesday I have my 2nd f/u appt with my local RO, and Thursday my 3rd opinion with a new RO. Then a week from Friday my 2nd reconstruction surgery in Miami. We are driving this time and visiting friends along the way - leave Saturday. So lots of stuff going on for me in the next 2 weeks!
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Dt - I'm tired just reading your schedule! Wishing you a smooth surgery & speedy recovery...
Sarah - the soup sounds delish! I had chili in the crock pot for today...
Caryn - I am so glad to see you are doing ok with rads as I think you have had more than your share of complications so only smooth sailing from here on.....lol
Thanks for the positive thoughts... Called my ps this morning and he wanted to see me immediately. He feels it is likely scar tissue or a wayward stitch but wants to keep an eye on it as better safe than sorry... Makes me feel better too....
Hope everyone has a good week...
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Odie - oh good! Glad you're being looked after - great you could get in so quickly. Sleep well tonight.
Caryn - so excited for you! 4 more days of rads - may you end well and move on to the next step. That little spot better get out of town.
DT - sheesh - all this and the holidays too? I hope you're treating yourself right - this is a lot! What does the second reconstruction entail?
The stew was good, not knock-your-socks-off good, but good. And although it took a while to get all ingredients prepped and in the pot, the payoff is that the cleanup AFTER dinner was minimal 'cause I'd done it all in the a.m. Dishes into the dishwasher, wipe up - done & feet up checking BCO. We're all fighting colds here, so early to bed for me. As my PT said today "Sarah, your sleep is everything right now" - so, doctor's orders, right?
I hope you all rest well tonight.
Sarah
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Odie, glad you are getting this looked at pronto. And I agree about dancetrancer's schedule!!! Whew! I am just exhausted!!!
DT, best wishes with the RO folks.Sarah, I am also trying to get back to some normalcy with cooking. I always enjoyed it, but with the fatigue, neuropathy, multiple complications and set-backs, and the fact that I continued working nearly full-time throughout the last year and a half, I have not been able to cook as much, but you have inspired me! I just LOVE having the house smell of homemade soups, garlic, curry, spice cake, etc.
Wow, Momine, you got foobs in the hospital??? My BS just didn't discuss any of this before surgery (I have since read that it is a good idea to get a fitting before surgery to give the fitter an idea of what might be most appropriate), she just told me we would talk about it after surgery. After surgery, I got a miserable rash from the chloraprep, then got wound infections and infected seromas, so the last time I saw her she just gave me an Rx for antibiotics and told me to see her in 6 months. No information whatsoever about bras, prostheses, etc. I had to ask her for an order for fitting for prostheses and LE sleeve. I don't know if she just doesn't care because I am not doing reconstruction and most of her patients do or what. I am probably not going to see her in 6 months. I don't really like her NP either, so if there is any additional surgery in my future, it probably won't be with her. Thanks to all of you who gave me suggestions and things to think about. Wish you could go shopping with me tomorrow!
Caryn, you are amazing - making so much progress after such a rough time. How are you feeling?
I am feeling better after taking time off this weekend, almost no pain at all! Yaaayyy!
Sending special hugs to all of you tonight, just because.
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