TRIPLE POSITIVE GROUP
Comments
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Luckyjinnjmom you are not being vain. Yes even if your PS uses the same size implant there can be size differences. The shape of your ribcage can cause this. Remember we really aren't perfectly symmetrical. I know my lefty is a bit lower and more under the arm then righty. This isn't a perfect science. I did have a revision on lefty last fall to push it up when I did the nipple recon and more fat transfer. Helped a little but I don't think he saw what I saw. Will be interesting to see what he says when I see him this fall.
It seems a bit early for you to panic. April 9th… I would think things could still change for 6 months post swap out. What does your PS say? Not sure if fat transfer would help. I guess it depends on how different in size and if the fat transfer takes. Usually fat transfer is just for adjustments and smoothing things out unless you are doing the Dr. Khouri/Miami Breast Center fat transfer.
How do you look in a bra or bathing suit top?
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I just had my exchange surgery Thursday. How long does the swelling and soreness last? How long did you have to wait to get nipples? Another step closer to normal again....can't wait!!
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MsBelle everyone is different. I had fat transfer at my exchange too so I was pretty bruised. My boobie prizes though didn't look that bad. I'm not a good person to ask about soreness because I handle pain real well. Never took any meds, not even a tylenol after the BMX or any of the other surgeries. I found everyday I felt better after surger… just the oposite of chemo. The donor sites were the sore areas.
I believe you have to wait at least 3 months before you can get nipples. You want to make sure those girls drop and fluff before doing the nips.
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Actually you really need to talk to your PS about how and when to start massaging. It might be too early. Also the video massage is very different than what my PS has me do. I actually cup my hands together under the breast and push up and in rather aggressively for 20 seconds.
but here's the video just for fun. (kayb I'm surprised you remembered that)
^ this might be for augmentation but not for reconstruction.
I swear she did it faster last time I looked at this.
This video* is even funnier because they have a man with hair arms demonstraighting. Again this is not how my PS has me do it so be sure to check with your PS.
*Must sign into youtube to prove you're over 18.
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Bucky, it was my understanding that the birth control pills caused hormones to feed the growing tumor. I could be totally wrong tho. But my gyn told me to stop the pills immediately upon dx.
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as far as PR status my GYN told me they dont even know what it means??? Is that true?
Also, any of you girls as far out as me and having lip issues? Mine are so dry and shredding a lot. I thought it was the herceptin but I"ve been off of it now for 6 months. I have tried everything to try to "cure" them.
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My lips are the same as they always were. My last Herceptin was Sept. 2011
They are not really sure what PR+/- status means. I have read that a few studies show some of the hormone therapies work better with high PR but I think they might still be inconclusive at this point. I'm not worried about it. My PR was only 5%.
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When you say your lips are the way they always have been. Are they normal? Really chapped? Or just not an issue?
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Not an issue. In the winter I need to moisturize (usually use aveeno or vasoline lip balm). It gets dry and windy in the midwest but now I do nothing.
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Lago, while you are smearing horse pee on your fingers and contemplating your pregnancy, I am going to Wake Forest Medical Center for my trial, having to take a pregnancy test every three weeks at 57 years old, and with my tubes tied. I get the chuckles every time I go.
It seems I used that urea stuff for something years ago, but I don't remember it being a prescription, so maybe it was weaker. I will take your info with me though, thanks! If I have some kind of fungal thing, I am not taking the meds. Too much strain on my liver from chemo I think.
I will look into laser. I don't think it is covered by insurance, unless I can get the doc to convince them I can't take anything else. Oh well, I will cross that bridge when I come to it.0 -
fluff - I am wondering if I will have to take a pregnancy test too - they did not mention it at any point, but I have also had a complete hyst/ooph. The likelihood of a pregnancy would be pretty remote at this point!
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Was just wondering about the ER positvity issue. I dont have my path report so cant be sure of a %. Also in UK it might not even appear as a %. Someone on here (sorry I forget who) suggested that Her 2 + ladies tend to have a lower ER%. Is this true and if so is it a good thing in terms of the tamoxifen not having to work as hard?
Hope everyone had a great weekend with zero SE's.
Liz
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Fluff I just started to use Karasal nail on my toes. It does have urea in it. It's only for nails. If you have fungus try Fungi•Nail. I started that a week ago and it really does take care of the fungus on the skin (under and around nail). It doesn't work on the nail though. I purchased both products at Walgreens but not all of them carry Karasal.
Jackpoo there is some literature that says some women that are HER2+ don't metabolize Tamoxifen as well. It could be because we are not as highly ER+ BUT… I do believe the study(s) are still inconclusive and might have flaws. Do not assume this is true. I know many women on Tamoxifen that are HER2. I doubt insurance would pay for it if there were good studies showing it didn't work. But do discuss this with your onc. Tamox or AI with Luprin shot is good for premeno women. Postmeno Tamox or AI. Some woman can't take Tamox for other reasons (like blood clots) so Luprin/AI is their option.
But the bottom line with ER+ or PR+ is it's like being pregnant. You can't be a little pregnant. If you test positive, high or low you will be recommended hormone therapy.
Pregnancy tests for women without equipment! Now that's a waste. No wonder why our medical system is bleeding $$$. I might understand for someone like me who went into chemo peri-meno and early 50's but really. How do you get pregnant with no uterus or ovaries? Did someone flunk high school biology? Now for tubes tied I'm not sure how that works. Maybe they're worried they weren't tied tight enough.
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I have my first active day in the study on July 16, so I don't know yet about the pregnancy tests - but it would seem to defy logic to test me before each injection, don't you think? Not to mention that becoming pregnant at 55 with no uterus or ovaries would be a medical miracle, lol! It does make more sense for fluff because of the very remote possibility of pregnancy - but for me, it is a lot more than remote! I would be a downright freak of nature!!!0
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Hi lago
I was put off Lupron because I didn't like the thought of more injections and my bc nurse said that as I am only 41, I could be maintaining the Lupron programme for years. I
I suppose I will just have to hope the studies about poor metabolisation of Tam for Her 2 women are flawed. I am still having periods about every fifth week but they are getting lighter and my last test showed I was peri men. If this is the case then it's likely that my estrogen levels are lower now than when I was dx. I did experience temp chemo pause but period returned 3 months after last chemo.
By the way I'm loving my new name (jackpoo),ha!
Liz0 -
I'm a little dyslexic. I can flip & transpose things If it weren't for spell check you'd think I was speaking a different language. 0
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Well, because of autocorrect we actually do speak a different language sometimes!
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Lago,
Thanks - you're right - the PS suggested that I keep working with righty - down and in massage strokes - and that it might still come around - I'm doing that - it's practically an obsession at this point.
I look ok in a bathing suit/bra - but the rt side is a little smaller (i.e. the mound of flesh that pushes out of the bra) - I think because righty is too far to the right and too high - sorry - hard to describe - and probably TMI anyway.
Thanks for your feedback - I will keep working it and see where things stand when I go back in for tats/nipple - take care -
Lucky
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I much prefer jackpoo! jackboo is a pet name for our son. Poor child, he is 11 and still has to suffer it.
Liz
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shore1--thanks for the reply....makes sense...I was immediately taken off them too.
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SpecialK if you become pregnant you can start your own religion… and I'll become a believer for the first time in my life 0
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I will be a follower too! I laugh every time I have to sign off that I don't need a pee test. I have my tubes tied and I also had thermal ablation. (most recently a hysterectomy and ooph) It would be divine intervention that's for sure!
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Hi everyone!
Just switched MO's..same practice different office....and infusion sites..this time in a hospital... for my last 6 herceptins. These decisions are so difficult but so far I am pleased with both the MO and the infusion center. I've told myself if I 'm unhappy with the MO..I'll switch again.
Question...my insurer has denied claims for the Ca 27-29 blood test. This is the first treatment/ test that they've denied so far.
Haven't discussed it with the MO but read about it online. Understand it's not all that accurate and somewhat controverial. Do your MOs use the test?0 -
hi ashla..
I just changed my MO...it was related to my Insurance....
He was my MO for 7 years and he did Ca27-29 Blood work every 4 months....
On the other hand my new MO doesn't believe or does the test...she said it's very anxiety producing and not reliable...mine used to change couple points here and there but always remained in the normal range..i believe it is under 37....
Insurance paid for all of them
Good Luck to you.........
Sheila
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ashla--hope you like your new MO, it is so important to be able to communicate and feel comfortable with them. My MO is so patient with all my questions, literature, etc.....and he is warm and fuzzy too.
As to the Ca 27-29.....I was getting it done every 3 months till the end of treatment in May. I see him again in August and I am pretty sure he will run another test at that time. I have heard that they like to keep an eye on them to see if they suddenly go up or if they show a steady increase. I presume if they do show activity it could be indicative of a recurrence. Although, from what I have read, not always because other things could cause an elevation. ie... infection, illness etc. I have read that someone had a recurrence without an elevation of tumor markers.
My Ca 27-29 FWIW, has always been in the normal range, but never 0. That will be a question for him at my next appt.
My Insurance (although crappy) does pay for this test.
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Hi bucky...i asked the same question about the number being 0....
MO said it never gos down to 0 ..even with people who have never been DX with cancer...
Sometimes i think about the answer he gave me.....but you know what...as long as it stayed between normal range..I stopped questioning it anymore
My last 2 numbers were 25 and 26
♥
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The tumor marker test is yet another thing that has never been brought up by my MO - do they start that after treatment or during. Sometimes I think she only tells me things on a need to know basis unless I ask questions.
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My MO does do quarterly CA 27/29 and CEA, even now at 1 year PFC - both are covered by my insurance. He is tracking any trend but does not get too excited by any individual test result. I had a normal CA 27/29 after surgery but prior to chemo, but my post-chemo test was double the high normal. I was re-tested subsequently at about 3 weeks and then 6 weeks, and the number gradually came down to normal again. The theory was inflammation from chemo, which made sense because I was a hot mess at the end. Many oncs do not use this test because they feel it is unreliable.
lago - If I get pregnant you will be the first to know - I will send your initiation packet in the mail for our new religious order, lol!
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Thanks - I would just be a nervous wreck about those numbers- the high calcium put me in such a tailspin last week, I didn't even ask what it was after my pre-Tx labs yesterday.
Special K and lago - you must have robes for your new order - any color but pink
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The tumor marker test is very controversial, b/c it is not reliable. I think it really only means something if the numbers go WAY up, and consistently upward in a trend over repeated tests (but it's been a while since I read about it, so I could be recalling incorrectly).
My MO runs them - only had one prior to chemo so far.
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