I look for other flat chested women. A rant.
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Sounds like the sellers of mastectomy products need more education than the surgeons. But then again, they are trying to sell you products. I think they would do just as well to realize that going flat is an option, because those of us that go flat still needs lots of very comfortable camis. While you can buy camis anywhere, if the specialty store staff understood the issues of seams, fabrics, and the height and tightness/looseness of the cut under the arms, they could still keep their sales up. Women would have more respect for the specialty store staff if they actually acted like they cared about what you wanted vs same thing for everyone. I wasn't offered any choices when I went to the mastectomy store to buy my first prothesis - either in types of prothesis or type of garmet to wear it in. All of the options I have learned about, I learned from you ladies here.
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Marilyn, that gave me a good giggle.
Djustme, I tried a few mastectomy shops and came away emptyhanded. When I explained that I could not wear a bra band, they were out of ideas. There also was no browsing of breast forms allowed apparently. Weird experience.
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I found great camis at Kohl's. Very comfortable and my DH thinks they're sexy.
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Marilyn, HE's the one that said they look good, so I don't blame you for blurting out they were brand new! LOL! I think surgeons are immune to those kinds of conversations anyway.
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Momine - I've been to three different places for prosthesis fittings and 5 different fitters. I think that I found my perfect fitter, finally, last year we spent three hours one day, then I went back the next morning, but found the perfect prosthesis!!! She had jillions of prosthesis' out for me to try, it was pretty amazing! Now I'm only going back to Joanie at Ladies First Choice in Salem, OR for bras & prosthesis - and Doris at Just Like a Woman in Portland, OR for compression garments!!!! Hopefully neither of these ladies will ever retire!!!!!
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Linda, I am glad you found something that worked for you. I think it is also the set-up that is difficult for me. I don't like having the person right there in my face, and I don't like having to say that I don't like something.
I am actaully considering buying some trannie breastforms over the net. They are much cheaper, lol, and I won't have to deal with a human.
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Momine - I did have to get over the "in your face" thing - got rid of the personal space bubble when it comes to trying on these things. I know some women just say bring me in XXXXX, but if you can let the fitter help you, up close and personal, they can do a good job, though I did have two fitters that just said this is what works for you, and I went home with one of them, the other I said I was too tired to make a decision and left... I guess I learned that if I wanted one that was comfortable and looked good and matched the other side, I would need to take the time!!! I have to travel 100-200 miles each way to get to these places. Luckily the bra/prosth fitter is close to my parents (150 miles), so I can stay with them when I go, and the compression fitter is by my son's (200miles). But let me tell you it's worth the travel to get it done right. Also, somebody mentioned, probably not on this forum, the prosth with the bumpy back - I love mine, it's comfier and cooler than any other I've tried.
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Linda, that is a trek! I can also see how it really matters a lot more when you have a breast on one side. I have none, so I can make do with less than ideal solutions.
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Djustme how are you feeling today? Any news?
Momine I had a look at a few tranny websites a while ago to see if the fellers were coming up with some original ideas. I honestly can't tell the difference between overpriced medical prostheses and tranny silicone bits. Maybe the weight?
Re your question about my surgeon and her antipathy towards reconstruction. She doesn't like implants because they can obscure recurrences and mask problems. She particularly dislikes the epic surgery involved in flap recon - and the endless tweaking to get it right. I think the idea that subjecting a woman to surgeries, chemo and radiation and then following that up with yet more epic surgeries for recon somehow offends her view of healing the sick. She thinks they all look pretty awful too.
A question - I had mastectomy AND radiation? Anyone else?
By the way - I'm LOVING my Arimidex holiday. Boundless energy and a clear head! No sign of Mr Libido yet but I remain hopeful .....
Hope you are all well.
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Froggie, ha! my thought exactly on the trannie bits, and somehow the idea also just appeals to me. I always had a soft spot for trannies.
I can see your surgeon's point, thanks for explaining.
I had BMX, 2 different chemos, rads, ooph and femara. In other words, I got to try ALL the rides in the park. About that femara, it is now 9 months on the stuff, and the SEs seem to be calming down (not that they were terrible anyway) and my brains seem to be coming back, which is refreshing.
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Hi everyone,
Tomorrow I officially join this forum. Surgery with NO reconstruction 11 am, and I am so nervous! Not of going flat, just the whole surgery ordeal. I just want it done so I can start with Chemo.
Prayers to all,
Carla
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Initially, I had a lumpectomy in my left breast. The possibility of a mastectomy was never mentioned by the BS who was the only doctor I consulted. However the margins were not clear, so my breast surgeon made an appointment for a multi-specialty-team meeting for me to get info about all my options. In spite of that, I think I got more information from online research ... real women's feelings and reactions to treatment and reconstruction rather than clinical jargon. My main objective for a double mastectomy was to "just be done with it." That there was no need for radiation or chemotherapy cinched it. It's been 3 1/2 months since that 2nd surgery. It's taken longer than I had thought to reconcile not having breasts and to feel well and more "like me."
I just got home from a long weekend of celebrating a wedding in the family. For weeks in preparation, I tried on just about every garment in my closet trying to find the best combinations to wear for various events ... fancy reception in an art gallery, brunch at a country club, and just arriving in and leaving town looking good. There was no augmentation ... just me. I felt a bit of pressure about this, because it's the first time many family members and friends were seeing me since my diagnosis of cancer and surgery. I wanted no "poor Nellie" reactions. I realized any attention on me would be brief and I wanted to give a positive first impression to help initial conversations get beyond that "about me" talk quickly ... and it did! I had a good time and am not nearly as worn out as I expected to be after all the festivities. Hope I can keep it in my head the importance of pacing myself during this holiday month.
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Carla, I bet you will be surprised at how easy the surgery is - I know I was. Sending wishes for an easy time.
Nellie, I'm glad that everything went well. It's so important to accumulate successes like this, it really builds confidence doesn't it?!
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Carlads - Good luck, best wishes and hugs.
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Good for you Granellie! I always love to hear when women have a positive experience of any kind. Having fun is always good for your health and being able to enjoy it on your own terms gives you lasting positive memories and a sense of normalcy.
Good luck Carlads, I will be praying for an uneventful surgery and recovery with minimal complications.
No news yet Greenfrog, I probably won't know anything until Friday. Thanks for asking.
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Good luck Carla.....you'll do fine. A big relief to have it over with. The surgery really is very doable...try to get a good rest tonight.....sending gentile hugs...
Lisa
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greenfrog - I had MX and rads, too many lymph nodes effected, also had chemo & herceptin & now Aromasin.
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Greenfrog, radiation after mastectomy is just about the extent of the disease. If a person had a small tumour with huge margins and negative nodes, then it makes sense no radiation. With clear margins but a large tumour and positive nodes, or positive margins, the chance that there is a large burden of malignant cells remaining in the area is a lot higher. The questions are the scenarios in-between. There are lots of studies looking at where the cut-offs should be - how many positive nodes constitutes enough that radiation will decrease recurrence risk, that type of thing.
My tumour was obviously pretty big and we suspected I had positive nodes, but my surgeon didn't tell me right off the bat I'd need radiation in addition to mastectomy. I think she realized I was far more scared of radiation than the surgery and she just took it one step at a time. I was crushed to need radiation, but it was a big tumour and I had quite a few positive nodes.
I hate that I needed it. I hate what it did to me. I think I look pretty good - the skin discoloration is really minimal - but that armpit feels bad and the tightness got a lot worse with the radiation.
I didn't get the full smorgasbord because I didn't get ooph (too sick for too long after chemo for an elective surgery, then it was clear my ovaries were toast) and didn't qualify for Herceptin. Arimidex is my poison of choice for now. No horrible side effects except the accelerated old age.
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I love this post. I have felt the same way since not having reconstruction after my bilateral mastectomy on 7/19/12. Flat chested women represent!!!!!
I want to start a club!!!!!!!!!!!!! No wait, I want YOU to start a club and I will join
Christy
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Yeah Outfield the mastectomy and rads thing is interesting. I do wonder how much of my LE probs are attributable to the rads. My tumour wasn't huge and I only had ITCs in sentinel node - but I did have a bucketload of LVI and the tumour was in essence a recurrence of a "benign" lump I'd had removed ten years earlier so I really wanted to fry that area - especially as I had been pulled off of chemo early. I recently read a study which said that radiation for mx women who'd had significant LVI reduced risk of local reccurence so I am happy I went down that route in spite of the risks.
Carla good luck. I hope it all goes very well.
Linda - any particular reason why you are on Aromasin rather than Arimdex? They are going to try me on a different AI after Xmas so I am shopping around!
Momine - so, uhum, what do you think of these mean puppies ;-) http://compare.ebay.co.uk/like/271093855665?var=lv<yp=AllFixedPriceItemTypes&var=sbar&adtype=pla&crdt=0
Hope everyone is ok.
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I appreciate all the conversation on this message topic. I am 9 weeks past last chemotherapy and doing fine. My finger nails are kind of funky, and my hair has yet to grow back enough to eliminate the dreaded wig . . but overall good.
I am NOT comfortable yet in my clothes. I have discomfort on my left side (non-cancer side) when wearing ANY thing with elastic. I hated bras, I was nearly flat before BMX, I have been back to ONE AND ONLY store in this State and definitely feel like my needs are not being met. I have purchased wide, soft elastic and sewed to the bottoms of a camisole, an "aahh" bra, and a AMOENE camisole. This helps a bit, but NOT enough. I am very frustrated with the whole thing. Does anyone have a COMFORTABLE option or has anyone found a COMFORTABLE option out there for wearing the foobs?
Funny story - when I am at home, I take the wig off and remove the foobs. (I am getting more comfortable going to stores, etc., without foobs, but still wear them to church, work and "going out".) Sunday, went to church, returned home, removed the foobs but NOT the "aahh" bra, and removed the wig. Much later in the day, I got myself ready to go to a concert later, put the wig on, left the house and was 10 minutes away before I realized I was WITHOUT the foobs. I was fairly self-conscious - but NOTHING happened. Fair to say that this "old lady" isn't looked at much and the absence of my foobs meant nothing to anyone. (But really, WHO would say anything anyway?)
I agree with many of you above - I do NOT grieve the loss of my chest. I am not comfortable with foobs yet - but not really comfortable without them, either. Hope all are doing well!
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Greenfrog, Bwa! I saw those and cracked up.
Fern, the simplest and most comfortable solution I found so far is this:
1. Take a tank top that fits snugly and well. If it has a bit of lycra, all the better.
2. Get a cheap, simple bra with molded cups, in a size you think is appropriate.
3. Put on tank.
4. Put on bra over the tank, and pin it to the tank in front, and where the cups end at the top and sides.
5. Remove carefully.
6. Sew down the middle, and around the cups, leaving an opening for foobs. Cut off straps and back of bra.
7. Voila! A cheap MX cami, made to measure.
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Momine, interesting. I'm glad you posted your steps. I had figured that you put on the bra first, then the tank. So I thought that I'd have to use a pocketed bra or sew pockets in the bra. Doing it your way sounds simpler.
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Greenfrog - I started with Armidex and had pain issues within a couple of week, and they just kept getting worse, MO changed me to Femara - and it got even worse, so he then changed me to Aromasin/exemestane, and at first it was a little better than arimidex, but that didn't last, just decided to stay on it after that. I considered asking if I could try arimidex again, but doubt if it would make a difference
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Thanks Momine, that's great info.
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Thanks for the instructions Momine, I will keep it in mind if I ever decide to try foobs. A few days ago I mentioned that my wound bled the night following my mx, and it has resulted in a very large blood clot under the scar. The pain under my arm has been increasing in the last couple of days, and now I have this hard cord like mass on the top of my chest where the arm meets the chest, and it hurts. I will definately tell my surgeon about it on Friday, but has anyone else had this experience?
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Djustme, I am becoming very worried for you that something is really wrong. Seriously consider whether you need to be seen NOW!! PLEASE think about it carefully. Do not hesitate to demand to be seen if youu are worried. Believe me I did exactly that, even camping out on their doorstep until they opened.
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Thank you Starak (Barbara). I will call his office first thing in the morning. I thought maybe I was just being paranoid. I have a tendency to just wait as long as I can stand the pain. I would go over to the hospital right now, but I know that at this time of night they will make me wait 4 hours to be seen by a doctor who may not do anything but tell me to call the surgeon in the morning. Actually, my surgeon should be at the hospital tomorrow as it is surgery day for him, so I probably won't get to speak with him until at least thursday. I may try going to hospital emerge tomorrow or at least calling the nursing service and ask them to send a nurse - its not a day she is scheduled to see me. I'll try to do something - I don't think the pain should be getting worse.
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You're not being paranoid Djustme - that is not normal!!
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Djustme, a surgeon HAS to have some way of dealing with post-operative problems. It may be another surgeon covering sometimes. It may be that he takes your message and calls you between cases. It may be an experienced nurse or PA getting back to you. But don't make assumptions about how long you'll have to wait based on what you think his schedule is. Complications don't follow schedules. If you started to run a fever in the middle of the night, there would be a way to deal with that even if the surgeon is fast asleep, right?
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