Lumpectomy Lounge....let's talk!
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Moondust, Trish, and Jill, you all look amazing! While we certainly hate to hear of the problems, you inspire those of us just getting started. I'm still waiting for my oncotype to come back to know which way I'll be going first. See the oncologist on July 18 so should know by then. Jill, you mentioned you colored your hair (love the color!), can we not color hair during rads? I knew about the chemo but not the radiation.
We're still having a heat wave out here, triple digits every day, so even without treatment, I'm pretty much staying inside. My skin is so light, I burn within about 5 minutes in the sun. When I think of what I did as a teen, laying out coated with cocobutter or baby oil and just frying, I really cringe! One time, in high school, I got so sunburned, I passed out! Makes me worry a bit about how I'll react to the rads!
Hope others' week is a bit cooler. We always worry out here because of fires. I know other areas have other concerns. All stay cool, cover up, and I hope skin is healing. Dara
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Although I had decided to have no reconstruction, after going flat since Feb 2016 and wearing prosthetics for a month now, I find that I really like having "breasts". I am considering reconstruction now. Here is my dilemma: My PS wants to do over-the-pec-muscle implants. She says that she can make a pocket and stuff them in there, like breast augmentation. I'm kinda concerned about this because it seems like there wouldn't be anything to hold it in place. I have seen two of these over-the-pec implants, both of which dropped and you could see a lot of rippling in the chest. I am also concerned about putting foreign objects into my body. I know a lot of people have had significant pain and infections from traditional under the muscle implants and I am not interested in having that.
I really have been thinking about the DIEP flap. I'm a big girl, so I'm pretty sure I could get decent sized breast from my abdomen. I like the idea of having something that is my own tissue, will feel warm and normal, and will also result in a flatter stomach. I plan to lose at least 30-lbs prior to any more surgery, but even so, I wouold still have plenty of fat to turn into breasts.
I have an appt to see another PS in 2 weeks. Honestly? I feel a bit traumatized just going into my old PS, after all the problems I had. I do not feel secure there and I am questioning her advise to have this over-the-pec implant. There doesn't seem to be a lot of info online about this.
I guess I'm asking people to weigh in on this. What would you do?
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Poodles, if I had the time for a DIEP flap that is the way i would go. Where are you located?
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It's funny (yet not funny), the strange looks I get from people every time I go to MO office. I never see anyone there that looks younger than 60 and they look at me like "what are YOU doing here?" LOL! I'm waiting for someone to ask me like the elderly lady at the RO office did. I'm guessing in my area, I'm one of the few "younger" cancer patients. People look at me like I'm a novelty lol! Start tamoxifen in 2 weeks after I heal from hysterectomy. He said it's ok to wait as long as we start within a year of the diagnosis (it can decrease white blood cell count) I'm going for labs and check baseline liver enzymes and already had bone scan. I need some advice though. I was diagnosed per mammogram early January. He said I could mammogram the OPPOSITE breast anytime, but the other breast that had cancer and radiation can't be done any less than 6 months after completion of radiation, which would be end of November. The question is : should I mammogram right breast now and left breast end of November? Or do I do right breast now and just wait until after January first to get back on track with doing them both at the same time? It would put me doing the left cancer breast 7 1/2 months after finish of radiation. I'm guessing my insurance will pay for mammogram every 6 months due to the cancer?
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Thanks everybody! I do have a little bit of eyelash now, I put mascara on them even though they are short and skinny! My eyebrows are coming back to, they are very light colored, and have absolutely no shape, so what you see is what I've drawn over them. I'm going to get them waxed this weekend, and then maybe they will start looking nicer
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Definitely get that second opinion
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LG, you should have your doctor verify with your insurance. It is unusual to have every 6 month mammo. That is a lot of radiation. My schedule was going to be alternating every 6 months mammo and then MRI.
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I got last week's mammo report back today. Left was BIRADS 1--normal, repeat in 1 yr. as a screening mammo. Right, because of the 7 cm seroma (had been >10 cm on CT scan last Oct.) and a fat globule floating in it, was BIRADS 3--probably benign, check via dx mammo in 6 mos. to assess progress of resorption. Pretty much as good as it gets after having bc.
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Sandy, what a relief! Great news.
HUGS!
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I feel pretty good about it because the radiologist who read my mammo and issued the report was the same one who read last year’s screening and spot-compression dx mammos and did my dx ultrasound. She rated my 2015 R screening mammo a BIRADS 0--needs further imaging; and the ultrasound a BIRADS 4B--“suspicious for malignancy” but can’t tell “possible” vs. “probable” sans biopsy.
And my friend who had the BMX back in late April got her path report back this morning--the L breast had widely scattered multifocal DCIS and the R extensive ADH, so her surgical decision was the right one for her.
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Sandy, nice when you have faith in your radiologist. I'm curious as to why it took 2 months for your friend to get her path report. That seems like a very long time.
HUGS!
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Good news on the mammogram, Sandy! Now you can take a deep breath and relax a little (at least until the next one.)
Molly, I live in the metro-Atlanta area. I got a recommendation for this doctor from my MO. He's not even in her hospital group, so that was pretty impressive to me. You know, these doctors often get a lot of pressure from their hospitals to recommend other doctors who are part of that hospital's network. I looked him up to see what the chatter was and every site I've looked at gives him high ratings (unlike my current PS--shoulda done some research before blindly taking my BSs advice!)
I have to wait until I get more sick leave and vacation Oct 1. By then, my scars will hopefully be softer and less red than they are now. They are pretty wicked looking. The current PS says there's a lot of fat necrosis--it's all hard and lumpy under the scars. As my mother-in-law used to say when she was out of sorts, "I don't feel pretty." The understatement of the year!
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Sandy - that's fantastic news
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Congrats Sandy!
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Congrats Sandy!
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Peggy, my friend may have gotten the report back before this but she mentioned it only today (and Bob, as her PCP, hadn’t seen it).
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Dear Alice/Moondust and Jill/LTF: You are both beautiful. I hope that both of you feel well.
Dear Poodles: You may not feel pretty but I am sure that you are gorgeous both inside and out. If it were my decision, I would have the DIEP flap. It is a very long and precise surgery so you must trust your plastic surgeon implicitly. If you have any reservations, don't do it. You will be in ICU for a few days after the DIEP flap surgery. However, I know 2 people personally who have had bilateral DIEP flaps and they love the results. They are both very happy with their decision. They both look amazing. If I went through what you went through, I would be terrified to have any foreign body surgically implanted in my skin. However, I say this with a grain of salt because I thought that I was going to have to have a bilateral mastectomy. I was planning to have a DIEP flap at that time. I am irrationally scared of implants so my answer is biased. (My doctors in Texas recommended my double lumpectomy/breast reduction/lift. When I returned to Florida after my lx surgery, a doctor who I met with regarding radiation called me and told me that if I did not have a double mastectomy then my bc would definitely return. I was scared to death when I received that phone call. I am sure that he could not have possibly said "definitely" but that is what I heard.) Needless to say, I did a lot of research into the DIEP flap procedure. Good luck with your decision.
Dear ChiSandy: I am so happy for your wonderful pathology report. I am also glad that your friend made the correct decision.
Dear LG: If it were my decision, I would wait and have a bilateral mammogram in one session rather than alternating breasts with each mammo and having them imaged at different times. I would also ask my MO and RO for their recommendations. Good luck with your decision.
Dear Dara: I hope that you have a low oncotype score.
Guess what? I got a phone call from Myriad labs today. Myriad will be sending me a refund because they over billed me when I had my genetic testing in July 2014. Yay!! This is a miracle. I still have so many bills from my bc journey so this is a wonderful surprise.
Dear Balding: I hope that you finish rads with your skin intact and without fatigue. Good luck.
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Yay Sandy!!!!!!!!!!!!! Good news!!!!!!
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Jill, congrats on finishing your rads. You have the biggest pretty eyes. Don't know if the short hair accents them or you are just lucky enough to have them....totally envious.
Moondust, you look great too. Wish I could rock short hair like you gals.
Jo
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614, Found money is always a good thing! I hope they send you a PILE!
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Wonderful news, Sandy! 614 woo hoo for the refund!
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Sandy, I feel the same way with my radiologist. He found my very small cancer and the hospital I go to is small town hospital, but they have 3d mammograms and radiologist has 90 per cent rate of finding cancers at stage one. Lady that does them has been doing it for over 20 years- so if they tell me ok, I will believe them. I wouldn't just have that faith anywhere.
Dara, hope your oncotype is low!
614, so good to get money back with all the money we end up paying with this cancer mess
Molly, thanks - I should have asked MO but I didn't think about it. Will ask breast surgeon today
Poodles, I bet it's such a hard decision to make. Take your time with it so you know for sure before you do it
The good thing about my tamoxifen? I don't have to pay anything for it! Yay!!
Peggy, hope your settling in well!
Hugs to all!!
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I was just reading in another forum an extensive discussion about grade and stage. I thought I had a pretty good handle on the various designations, but then I see a number of variations with the dx/treatment history of some of you. Lovinggrouches, I see that you list stage 1B, but <1cm and no node involvement. Is that because of your PALB2 identification? I'm still waiting for all my genetic testing results. Checked with City of Hope yesterday and they still haven't gotten anything back yet. I woke up in the middle of the night with a worry about my onco level. Just have a feeling it will be higher that I'd like based on the grade listed in pathology rpt. It's really the unknown that is the worst part.
I'm taking a photography class tonight at the art museum to try and keep occupied. I'm two weeks out from surgery today, so a nice way to mark the date. Just hope the heat doesn't cause my underarm to swell again. I'd look a little odd walking around with a bag of peas under my arm! Have a great day everyone.
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Dara, BC treatments are all over the place. It's crazy as you've discovered. We all tend to think of medicine as an exact science but it is still an "art" as well. BC has many variations that affect treatment choices, too. Waiting for that Oncotype score is difficult. Hope it low and if not, high so there is no doubt about what course of treatment you should do. Being in that middle area is rotten.
HUGS!
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Dara, they had stage 1b on my final pathology report. They initially said it was less than 1 cm, but the MRI had it slightly larger at 1.3 cm. I guess I never thought to change it on my info. I guess that's why they have me b instead of a? From lots that I've read, I've noticed that lots of women with high oncotype scores are usually high grade and low PR. It was hard for me to understand in the beginning why so many with exact status as mine, had to have chemo, but mine was grade 1 with high ER and PR and kiss was very low with no lymph node involvement and clear margins. Some have chemo due to unclear margins, some because they have grade 3, some because they are her 2 negative. So many different reasons. I have found that cancer treatment is now so individualized, but I've come to guess pretty accurately why people with same size cancers and same kind are treated so differently. The waiting sucks and wears on the nerves!! Prayers for a good score!
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Yesterday I did my second chemo of four. Today I am actually not feeling too bad as long as I take it easy. I had an online workout at 9. I'm glad I found this trainer - if I didn't have an appointment to keep via video, I probably would not be getting around to doing much exercise. This way I'm reminding my muscles that they have a purpose and better stick around through all this!
LG, I would definitely ask about the 1B status! It may be an error. I found an error on my pathology report. They stated my tumor was in the lower outer quadrant, when it most definitely was in the lower inner quadrant! I was an exception to the usual onco score with a 26, grade1 and no nodes, but I did have a high Ki67 and a fairly low (40%) PR. My second opinion doc said he thought the gene expression for Ki67 is what elevated my score.
Dara, I hope you receive your Onco score soon. I had a lot of turmoil in my mind once I learned mine, because I was expecting a lower number and already had it in my head that I would not have chemo. In fact, my MO was against chemo. Finally got the second opinion after radiation and he said definitely do chemo. By then I had come to terms with it and started June 8. It is not so bad so far, but certainly is taking over my summer! Post a photo from your class! Some of us on here are photography buffs.
Sherri, glad to hear you are actually getting a refund. Miracles never cease! I will have to do a formal appeal about my $3800 bill for the biopsy back in December because the doctor didn't send for the authorization. Not fun.
Sandy, thanks for the sun protection reminder. I wear my large brimmed hat whenever I go outside, and I use lots of sunblock too! Great news about your results!
Poodles, it's a tough decision about the surgery with your bad track record. I think you would get through it though. If it would improve the quality of your life by making you feel better, it may be worth it.
Sue, I am staying ACAP (as cool as possible). We don't have air conditioning, just the swamp cooler. Yesterday it was 110 outside, 88 inside. But it felt okay.
Molly, let's not forget our plans to get together sometime! It's too miserable in this heat, but it won't last forever!
Jo, thanks for the compliment
Peggy, how's the unpacking going?
Hope everyone is doing okay today!
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Dara, are you going to City of Hope? They tend to be pretty conservative if your Oncotype is low to moderate. I got my second opinion from Dr. Somlo. If you had a Ki67 on your initial biopsy report that can sometimes give you and idea of if your oncotype DX will be high or not. My ki67 was quite low and my Oncotype DX was 13. I was node positive and still no chemo recommended. If you were grade 3 chemo is almost a given.
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Alice, I'm not unpacking at all because NOTHING is here yet! Maybe another week or more. I'm less than thrilled. But nothing much to be done. I will file a Delay Claim after the furniture gets here and that gives me $40 for each day my stuff is late. Not quite adequate but better than nothing. The options for a one time $200 payment to get necessities or money towards a hotel just didn't do it for me. But I'm loving my home! Glad you are doing pretty good with your chemo. I gather each time can be different in your reaction and I hope yours is always good.
HUGS!
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Peggy, I am glad you are enjoying your new home. It really stinks about your stuff though! How was the BCO get together?
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Molly, it was wonderful! Tsoebbins and Kawigirl are terrific (of course!). We met at Starbucks since they figured I'd be able to find that (still learning my way around). It was a good choice. We sat and talked for about an hour and a half. I'm so glad to have met these ladies - I'd never have met them if not for BCO since our lives and their work are so different from mine. We'll definitely keep getting together, cementing our friendship.
I am enjoying my home, going to Spokane Indians baseball games with my son and daughter-in-law, getting everything done paperwork-wise caused by the move (car insurance and a zillion other things). I'm signing the closing papers for my Michigan house tomorrow at the closing company that handled the purchase of my Spokane house. Best way to ensure that everything is done correctly. Then all I need to do is wait for my furniture (and clothes and dishes etc).
Have a good holiday weekend!
HUGS!
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