Lumpectomy Lounge....let's talk!
Comments
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Moondust - thanks for your comments, much appreciated. It's tough being in that 11-25 range currently being studied in the latest phase of the TAILORx trial. The results just won't be out in time to really benefit me or anybody else in this particular boat! So close and yet so far away, as they say......
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Brandford, glad you're home and doing okay. Be sure to take pain meds if you have pain - whether a prescription or Tylenol. You need to be comfortable. Take it easy!
HUGS!
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Good luck with your recovery, Brandford - glad you're home and resting. Take it easy for the next while.
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poodles, so sorry about Dh, when it rains , it pours!!! Grazy, prayers on your decision. I was worried too, but my oncologist wasn't going to do chemo unless it was in high intermediate range. The only reason I don't worry Too much, is because mine is grade 1 and I know that chemo doesn't work that well on slower growing cancer. I still worry about the radiation not working on stray cells and having a recurrence of the same cancer. Prayers to all who have just started or finished treatment, surgery, just diagnosed- everyone wherever they are in their journey in fighting cancer!!
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Brandford, I'm wishing you an uneventful recovery, as I've come to believe those are the best kind!
Poodles, I'm so sorry to hear about your DH.
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Thank you all for your good wishes. I've been away from my laptop all day and I'm just now reading them all. My DH is really all over the place with this prostate cancer diagnosis. His best friend has been fighting prostate cancer for several years. He's had all the treatments that they recommended--surgery, radiation, hormone therapy, chemo. And it's been terrible, truly terrible. His friend is now 68, totally incontinent of urine, mood swings, can't control his emotions, grew breasts, and at this point barely even leaves his house because he's embarrassed about urine smells. So, DH is looking at him and saying, "NO F***ING WAY am I signing up for all that!"
Although I am a nurse (39 years!), I am not an oncology nurse--you could put everything I know about prostate cancer in a thimble. And from the research I'm doing, I'm coming to the conclusion that treatment is different for everyone--kinda like BC. No one-size-fits-all treatment. I am trying not to do or say anything to influence his decision-making. Ultimately, HE is the one who has to live with his choices, not me.
We haven't told the kids yet. We're going to wait until we get more info Fri, and then we're going camping for the weekend. DH has a bone scan next week and then we're going down to Savannah, GA, for my bi-annual round of home visits. By then, we should have test results. Once we get a plan in place we'll tell the kids. I'm thinking maybe I'll dispense with the plate of cookies this time--my kids are probably scarred for life by now (that's how I presented it to them when I had BC.)
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Poodles, keeping fingers crossed for your DH that the scans are clean and that his treatment will be less onerous than his friend's.
Brandford, glad you're home and that the surgery went well. Here's your mantra for the next few weeks. Repeat after me: “Why, yes--it IS all about me!" Now's the time to call in as many favors as you've saved up.
I will continue to think of my Oncotype score of 16 as “low," and not second-guess my MO's recommendation to skip chemo, unless the next installment of TailoRx reveals that women who scored 11-17 had a poorer disease-free survival time on AIs alone. I put no credence whatsoever in the German trial because ALL of the women who scored 11 or above got one of two chemo protocols (one of them rarely ever used for postmenopausal women because it can be cardiotoxic). I'm not too upset about my experiences with letrozole, as I had a really easy menopause and I figure the sweats, stiff joints and crummy metabolism were simply delayed ten years.
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Poodles, so sorry to hear your DH's news. My Dad is 75, had prostate Ca diagnosed about 3 years ago, and had local excision and hormones. Yes, he had some more significant continence issues for about 6 months, minor ones for a year or so, but he joked that his bald spot was growing in and his skin was lovely on the hormones;) His PSA has stayed down and he is doing well. I hope that your DH is not too discouraged by his friend's story.
It's no wonder it feels unfair - you have had far more to deal with that is reasonable!
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Poodles, I can totally understand why DH wouldn't want to go through what his friend has. That's awful. In a way it almost makes BC treatments sound benign, doesn't it? Zinny's father's story, though, is rather encouraging. I think you should skip the plate of cookies too. The kids would probably think the world was ending. Fingers and toes crossed that the scans are good. We're all praying for you and DH.
HUGS!
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(((((((((((((((((Poodles))))))))))))
I am reading along but just not up to posting. Welcome to all the newbies. Sorry you need to be here and listen to Peggy. She's the bestest.
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Molly, I don't know if I'm the bestest (thank you!) but I'm probably one of the oldest
Time to clean some more. Having a showing of the house in an hour (YES!)
HUGS!!!
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I hope the showing goes well. I'd rather have teeth pulled than try to sell my house. We're planning to sell within the next 2 years, so we're valiantly trying to downsize. My house is a wreck still, because I couldn't clean much in the last 6 months (arrgh!) I could knit sweaters with all the cobwebs.
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We need all new window frames, a serious front porch repair (missing pickets & newel-post finial), replacement of a couple of interior stairs (and probably new staircase-carpeting), and a thorough interior & exterior repaint; but every time I pick up the phone or surf over to Angie’s List, I start twitching. I can’t begin to imagine trying to stage the place for resale, since we’ve accumulated so much stuff! (We have enough in the bank to buy or rent something should we relo or downsize--and are praying our son is willing to be deeded the house outright).
We don’t have enough cobwebs to knit sweaters, but we certainly have enough cat hair to crochet doilies.
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Poodles and Sandy, Can't say that I'm enthralled with showing the house either. However, I *do* want to sell it. Have to put everything away each time it's shown, put the pretty bedding on my bed (i.e. no pet hair), clear off all the counters, desk, etc. This time I actually did a bit of staging. I have a long counter under windows in my kitchen annex. Normally the cat is fed there and I have TV on it. I move the TV out of the way and stow the cat dishes. I got out a couple pretty placemats with matching napkins, and put my nice looking kitchen dishes, silver and wine glasses there. Now people will know what it can be used for. DH loved to have lunch there, watching tv and looking out the windows.
I don't have any cobwebs or much pet fur (I did vacuum
) but that's because I vacuumed this afternoon. Poodles, it is a royal pain to declutter. But once you get started it isn't terrible. Start with easy stuff. It helps me now since I do have a house so I know how much space I have. Planning for some imaginary house was house. No basement is a toughie since I was going to stow a ton of stuff in it. But, on the other hand, I don't have any stairs! Sandy, I hope your son wants the house. That would be wonderful! And easy!!
My big dilemma right now is deciding if I want to have the memorial service for DH here at the house or keep it at the state park pavilion I've already rented. There's no electricity at the park and i suspect it will be challenging displaying all the things I want. I have always wanted to do it here at home but in January I thought there was a possibility that the house would be sold and I might have to move out before Memorial Day. That seems unlikely now. It would be so much easier at home. And weather won't matter. I have enough room inside. I had never planned on scattering Chuck's ashes at the memorial service. For one thing it is frowned upon at the park. So I thought that just family would show up early in the morning at the park's lake (where Chuck liked to fish) and hope to accidentally scatter them. We'll see how that goes.
HUGS!
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Poodles- Sorry about your DH. It's so hard.
I would love to answer and respond to everyone. I try to remember what I want to say but man, this is a fast moving, info packed thread, for sure! I can't even remember my own name after reading all of our posts!
I'm thinking about having my ovaries removed.. I met with my GYN yesterday (we all know how fun that is, right?) who recommended that I think about it even if my genetic testing doesn't come back with any mutations. I would like to be in menopause, so that would be good. I'm 52, I don't want to have my period anymore. Also, my tumor was ER+ and ER+ is the most common of BCs. So removing the ovaries would help with that, too. Anyone have advice or experience with this? It's kind of looking like a win win for me. Also, I wouldn't have to take Tamoxifen, just AI's.
Happy Wednesday!
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Hi iammags - I am considering the ovaries out too. Seems silly to take a shot to suppress them every month when I could get rid of them…My MO wanted to wait to see how I tolerated menopause first, so we are waiting.
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I've been missing in action and have been catching up with 4 more pages to go
Welcome tbalding, wiseseeker, Ce4758, ShippyMom, Chipsy, brandford, Andy, Katzpjay
MLP, your labs are beautiful. Fingers and toes crossed that your last chemo infusion will go smoothly.
Jan, belated thanks. They did make a torso mold at the rads simulation. I have one tatto on my sternum and 2 purple Xs on each side as well as one on the center line below my breasts. They covered them with waterproof tape. The lady that made the mold was nice and worked with me to get my right arm in a comfortable position.
Molly, sorry to hear that your daughter has the gene mutation. We all wish that she didn't have it, but now that she is aware of it, she will be able to take proactive screening steps to stay on top of it. How have you been doing since you stopped the AI? Quality of life matters, so if they can't minimize SEs with one of the other AIs then tamoxifen is better than doing nothing.
beach, are rads going any better? Did hydrating and some of the other tricks help with the dizziness?
Peachy, how's it going with the lbrance? Are you tolerating it OK? Oh, and thank you for volunteering for the study. I sat on an IRB board for 3 years and the biggest problem with clinical studies is getting sufficient study participants.
Mags, congratulations on the low oncotype score and not needing chemo.
Grazy, belated condolences on losing your kitty. Pets are members of the family and their loss is profoundly felt. I cried for almost two weeks when my pooch passed. My placenta tore at 26 wks but they were able to limp me along to 36 wks. I held on real tight to my son. I was having trouble cutting the apron strings so when he was in 6th grade, I rescued a horribly abused chocolate lab who became my replacement child. The dog was smothered and the son got more freedom - it was a win-win for everyone concerned.
Alice and gemma, congrats on finishing rads.
LTF, thanks so much for sharing the eyebrow "how to" video with us. I wasn't sure what to do with the wax, so now I know:-)
Peggy, glad to know someone else who uses the term "brain farts". It's one of my favorites that I picked up from my 93 yr old uncle.
OrKnitter, glad everything is OK.
Moondust, congrats on finishing rads. thank you very much for sharing your lovely photos with us.
Lovinggrouches, congrats on the low oncotype score.
Chipsy, glad you had benign biopsy results - what a relief.
Peachy & Kaneli, add me to the mammogram soap box a well. Tumor on the right side was picked up with 3D screening mammogram & thank god I agreed to picking up the additional cost for it because the little sucker did not show up on the traditional 2D one. Also, thank god for the BS who does MRIs on all his patients before surgery because that's how they found the tumor in the left breast - that one did not show up on 3D or ultrasound.
Happy belated birthday, Tbalding.
Welcome back, Mel. Missed reading your posts but glad you were off having fun.
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I too am thinking of having my ovaries removed. I spoke to my MOabout it, I will probably do tamoxifen with the shot for a year, and then look at it. Firstly to see how I tolerate it, and secondly because I really want the surgery to be well after I'm gone my active treatment.
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Grazy, thinking of you as you get ready to see your MO this week. I will need to take lessons from you on separating the emotions from the science.
LTF, great video on your eyebrow lesson...I need to buy all those products at Sephora.
Poodles, so sorry about your DH. Sending prayers and hugs your way.
Brandford, welcome and wishing you a speedy recovery.
Peggy, your posts have helped me so much...a beacon of calm in the storm. Thanks.
Sandy, yours posts teach me so much..will look over the Femara and Alternatives topics as well to get some valuable tips. Thanks.
Froggie, Wow! I'm impressed with how you can respond to everyone...I can barely keep up,
And to everyone new, sorry for not responding by name but this is a great place to gather information and to share in our unique sisterhood. Best of luck to you.
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Here's another one going to get my ovaries out. Or, I should say, my one ovary out. I lost the left one about 15 years ago when I had an enormous cyst taken out (they thought it was cancerous at the time, but thankfully benign.) Anyway, when I met with the GYN she was also concerned about my family history of uterine cancers, and of course, the gene mutations. She felt that it would be in my best interest to take the whole business out. Since it's preventative and not critical, I will probably schedule that in December. I've already met all my deductible and out-of-pocket for the year. Might as well get all the procedures done in 2016.
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LTF, Poodles, totally don't blame you. I don't have the mutations (mine came back inconclusive) and I'm still early in the process, but if I can get mine out I'm totally considering it at this point.
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Sloan, I can add the following to the dense breasts and Ki67 discussion. First period was at 10.5 yr, first child was at 35 yr and I only breast fed for a week, early menopause - completely done at 40 yr. Tumor on right side had a Ki67 of 23% and tumor on left side had a Ki67 of 3%. Due to the early menopause, I used HRT.
Thanks for the link to the article.
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MLP and LTFLy- in your pockets for your last chemo treatments, right?
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Froggie, good to see you back posting! My first cycle of Ibrance for the trial went well. It's 21 days on, 7 days off. (Just like birth control pills!) I had a visit for blood work at 14 days, and though white cells are down slightly as expected the nurse was very pleased with the level. I go back this Friday for more blood work, and another cycle of pills. I might be a little fatigued, but nothing drastic.
My MO did mention ovary removal as an option, and I have to wonder what I would need them for anyway? It would make sense as an if it could be an alternative to AI, since its side effects are decreased bone density and I've heard you can't eat chocolate. Can't remember where I read that, but the thought of no Ghrirdelli Midnight Reverie bars is worse than no alcohol.
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I haven't heard anything about not eating chocolate--I'm a chocoholic, so giving up chocolate would probably send me into DTs. I also drink the occasional mojito, maybe once-twice a month, at most.
As far as having ovaries removed to eliminate the need for AIs, that probably won't happen. We make estrogen and other female hormones in other places in our bodies, like the adrenal glands and in our fat. Getting rid of the ovaries shuts that source down, but will not take care of the other places. Since we can't live without our adrenals, I guess we're stuck with that. Sorry to say, we will most likely all be on our AIs for about 10 years.
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Peachy, I've never heard anything about not having chocolate. I also would find that onerous. I have never heard of any food limitations. So toss out anything you've heard along those lines. I've been on Arimidex for 18 months with no problems. I even....drink! I take Fosamax for my bones. I was slightly osteopenic to start with. I should get tested again this fall. I think that your body can still make estrogen without ovaries. I went through menopause 25+ years ago but apparently still made some estrogen. I forget the biology of all this. I'm sure someone can speak to it.
HUGS!
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I haven't heard anything about giving up chocolate--I'm a chocoholic; I'd probably go into DTs if I had to give it up. I also have a mojito 1-2 times a month, at most. My doctors are fine with that.
As for eliminating the need for AIs with ovary removal, I doubt that will happen. We make estrogen and other female hormones in other places, like the adrenal glands. Since we can't live without our adrenal glands, there's no shutting them down. So, while ovary removal does take away the majority of estrogen production, it doesn't remove it all. Most of us will be on AIs for about 10 years, whether or not we have our ovaries removed.
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Poodles, I, also, had my left ovary removed with a grapefruit size cyst about 22 years ago and it was borderline so was checked every six months for five years. My three children were 5, 7 and 9 at the time and it was quite worrisome for me. Now here I go diagnosed with left side breast cancer. Makes me wonder if some cells escaped waiting for the perfect time to take hold. Also had left mastitis infection in the milk duct....hmmmm.....more question marks.....
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Your breast cancer probably has nothing to do with your ovarian cyst. Ovarian cancer usually metastasizes to the colon, liver, and bones. Sounds like you dodged a bullet. As for why your left breast has been problematic? Who knows? I have had nothing but problems with my right breast (zombie breast.) I had all kinds of problems with the lumpectomy and re-excision (including huge hematoma, enormous seroma, and a serious infection). Then I had BMX 4/2/16, had a lot of tissue necrosis/death in what was left of the right breast and developed some necrosis and a large seroma in the left breast (good breast). It was really horrendous and I'm still not completely healed; it will probably be mid-May, at least, before both areas heal up. I asked both the BS and PS why all this keeps happening. They don't know. They both said that breasts don't like to be messed with and sometimes they have a hard time healing. All I know is, I didn't expect this. I know I signed a bunch of papers with all the possible consequences of surgery, but really, who expects to have all these complications? I sure didn't. It hit me like a 2x4 to the head.
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Poodles - so sorry to hear the news about your DH. I just wanted you to know you and your family are in my prayers.
Had some girlfriends over tonight and it was just what I needed! They are so supportive and I know I can call on them anytime. I took tomorrow off of work which feels kind of funny because Friday is my last day. I had a bit of a sore throat and I am just super tired. It just feels like rest is what I need. The past two nights I have tossed and turned. My surgery is next Tuesday and I just want to make sure I'm feeling 100%.
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