Nipple Sparing Mastectomy with immediate reconstruction
Comments
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Naoko- I was extremely Vitamin D deprived, too, and my GP has me taking 2,000 I.U.'s of it! Did you know they are now researching a possible link between D deficiency and breast cancer? It is estimated that at least 25% of the US population does not get enough D and it can be almost impossible to get enough through diet alone. We actually do need some sunshine. There are some great threads on here about this subject if you are interested. Glad your fill went well. I think it is great that your PS is taking it slow.
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Kate: Thank you! I have been doing IV's of Vit C and other minerals plus supplements so I am surprised to find out that I am low! I also take tons of other supplements. I guess I will find out what's going on on Monday.
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Good luck on Monday, MBJ! Hope they can figure out what is going on and that it is a quick fix!
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Naoko2013 - Glad your fills went well. I was very small too, and my PS did 60cc fills every two weeks and no problem. They will usually take it as slow as they need to - no need to be uncomfortable. For some reason I always got nervous before the fills, but shouldn't have because they never did hurt - good luck!
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I have been taking extra supplements for years. I went to my doctor a few weeks ago to have blood work done to see what I'm deficient in. He took 7 viles of blood, and testing takes up to three weeks. I go back tomorrow to find out the results. I'm curious to see what I am low in.
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Whitedove, let us know when you get your new thread up and running.
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Hi Ladies, Welcome MBJ and Naoko.
White dove, I ran into the exact thread you are desiring and it was fairly recent. I am going to have to browse and find it for you.
TN I'm interested in what you are having done. Is this an anti aging specialist, being that it takes three weeks, I'm curious as to what you are testing for thats not done routinely. Need some workup myself. Have my onc visit next week.
I have recently taking Indole 3 carbinol. also sold as DIM. it is the components of the cruciferious veggies like the broccoli sprouts and cabbage. It prevents the conversion to the bad estrogen. meaning it prevents 2hydroxyestrone to the carconogenic 16 and 4 hydroxyestrone.form. There had been research published and you can read up on it on the Memorial Sloan website. I don't think it can hurt you. Would be best for one who has had a uni or is high risk I take resveratrol for skin, 5000 vit D3, 1200 ca, omega fish oils 1000mg, MVI w zinc, COQ10 , baby asprin. Now purchasing for myself and family suncreen without parabens or exobenzone. Refer to environmental working groups website for their suncreen breakdown, you'd be surprised whats in this stuff, all the popular named brands contain something harmful.
Delray, I'll be happy to speak with your friend.
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White Dove, I found the thread its under IDC. The thread question is Had anyone had mx and not having adjuctive therapy. I need someone to tell me how to transfer a link like Kate did above to make it easy for you.
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Naoko- did you have DCIS or LCIS? I had a bilateral for IDC and my Dr. still recommends Tamoxifen. I really don't want to take it but he says it's necessary in case there is any "stray" cells in my body.
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I would second the recommendation to take DIM and add one for calcium d-glucarate, which has a similar function, of safely removing estrogen (and other hormones and toxins) from the system...
http://www.energeticnutrition.com/vitalzym/calcium-d-glucarate.html
http://findarticles.com/p/articles/mi_m0FDN/is_4_7/ai_91155405/
I had to actually STOP taking the DIM and flax because in combination with the arimidex they had wiped ALL the estrogen from my body, which is apparently unnecessary therapeutically- my onc is trying too get my levels back UP to a level that is safe but less side effect-y. So I heartily recommend for non-pharmaceutical takers.
And now I will be quiet about the off topic subject and return you to your regularly scheduled NSM talk...
edited to add- will someone PM me and tell me how the heck to get hyperlinks in the posts on this site???
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Jessamine, you mentioned your estrogen levels being low and that it wiped all estrogen from your body. How do you know this? The bad estrogen that is manufactured in the fat cannot be measured as it is not ciruclating in the blood which is why the onc. doesn't routinely measure estrogen being we are on arimidex. What test are you finding that measures the estrogen in your fat stores? The other thought is if you can keep your estrogen low to where he wants it raised, then can you take less arimidex, say every few days?
I thought of PM ing you so as not to hijack this thread, but feel the others would be curious as well. So if anyone objects let me know and we can pm.
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huh- well I don't know. I think he just checked my estridial (sp?) levels.... blood test, anyway- I don't know about the fat stores. I'm on the thin side so maybe he's not too worried about that? Anyway, he said the levels he checked via bloodwork came back "undetectable" and that what's needed therapeutically is for them to be under 11. He did raise the idea of taking less Arimidex, but that makes me feel freaked out, even though intellectually I understand that taking the Arimidex is not an end unto itself- that getting the levels low is the point, so if less works...what we decided to do was for me to take a month (now) where I am cutting back on some of the non-pharma methods- no DIM or flax, allowing myself to drink a little more alcohol- and retest at the end of that. Then we'll see- there may be a dose reduction in my future though.(The idea being maybe I can get the levels up a tiny bit, safely). I think maybe he just backed off the idea of cutting it because it freaked me out and because my side effects are not so so bad. He says getting the levels up to about 6 would be ideal to balance side effect management vs safety. But I just don't know. As long as we're talking about it, what do you ladies think? Am I just being crazy? Should I go for the raise in levels and enjoy the (hopefully) less hot flashes, fatigue, etc? It seems so scary to me... but in the long term, I do have risk of heart trouble and osteoperosis potentially from low E, so maybe lower isn't better....
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I would go for the rise in levels that your doc recommends and also that your thin and don't have alot of fat producing estrogen. I would think you have to have some estrogen to feel human and you are so young. I would lay off the supplements if staying on the arimidex. If you are content with the arimidex, meaning no arthritis SE's , you might as well take somethng that FDA tested and controlled vs not really knowing the quality control of the supplements.
Your story is interesting and there should be a study out there on the calcium D gluc. vs arimidex. but probably no money in that for the drug company. It does point to an option for those who are high risk or had a lumpectomy and don't want the arimidex.
Whats important to take out of this is that if one is taking the calcium d gluc. even if its considered natural alternative, it still could cause SE of low estrogen ie osteoporosis and one should continue to be monitored by their physician. My understanding of the Dimm is that it doesn't effect the good estrogen only prevents the conversion to the bad so SE shouldn't be as severe as the Cal d. gluc.
I am so sorry you had to take Chemo and now have to struggle with getting to feeling healthy again as we all are trying to find our norm after BC. I have learned alot from your story. Thanks for sharing. Now back to the NSM. for those newbies who come here for NSM info are going to get discouraged. Sorry guys.
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PB, I just went ahead and found the link to post:
http://community.breastcancer.org/forum/96/topic/754680?page=2#idx_31
The doctor I'm going to is into the anti-aging treatments and is more homeopathic based. He is in his 50's and looks like he is in his early 40's. When I find out exactly what tests he ran, I will let you know. I have always been pretty healthy, until the end of last year. I passed out one day and had to go to the ER, which is where I met this doctor. He did a quick blood test and found several things that were low, like my potassium and magnesium, etc. I have been taking extra supplements ever since. He told me to come back and have more blood work done, so I decided that would not be a bad idea. He also does metabolic rate testing to see how many calories you need a day, I was going to have that test done, but I have never been one for counting calories!
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Sweetie, that is what I was told also....about 10-15% after mtxmy and with arimidex, down to 5=7%.
I took the ovaries out, those little cancer makers, giving me another margin, and I am SO going for a prophy before all is finished surgically.
I too, was told that the tamoxifen and armidex are like insurance policies. Arimidex gives quite a few SEs but they are copable with.
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NO TAMOX after BMX and DCIS - Anyone Decide Not to Take it?
new BMX-Tamox thread. Look forward to seeing you there...if the link works!
http://community.breastcancer.org/forum/78/topic/755868?page=1#idx_2
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whitedove your link works and I see you have some visitors already. I'm not on tamox. so I couldn't contribute.
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TN thanks, would be interested, was trying to find an MD thats a member of the american academy of anti aging in my area. I found one I may visit after the kids are back in school.
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Sweetie2040
I had DCIS in my right breast. Had a BMX, they removed 5 lymph nodes that were all cancer free, the left breast had no cancer in it at all, and the tumor had great margins, so my oncologist felt that tamoxifen would not really reduce my chance of recurrence by enough of a percentage to make it worth while.
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Kate - did you decide to go to Vegas? How many from this forum are going?
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hurleygirl - haven't heard from you for awhile - everything going ok? Do you know when you exchange surgery will be?
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Hey vmudrow..I am here, just haven't had anything interesting to post lately..I go back for a visit with m ps on Monday and that is going to be the day in which we solidify our implant decisions and schedule exchange surgery. I can't believe it has been a month since I last saw her! I will keep everyone posted when I get a date scheduled. I can't believe it is here already! Your exchange is going to be in Sept right?
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Vmudrow- I don't think I'm going to go. I don't know too many people that are going. I don't see anyone from this thread and only a few from "Exchange City" that I know. (Whippetmom, Lilah and Val61). And it's the same weekend as my son's birthday. Are you going?
hurleygirly- Hope you get an exchange date soon!
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hurleygirly - I don't post often either - nothing interesting here. I go to PS today and I could schedule exchange in a couple of weeks, but it will be September because of some vacations etc. Let us know your exchange info and date!!
Kate - I'm not going to Vegas - I could even drive there in about 6 hours, but exchange probably in September. So maybe we should go next year and see if we can get some more from this thread to go? How old will your son be?
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Naoko-that's great! I think a big determining factor is with DCIS it is still not "invasive" so more times than not you do NOT need Tamoxifen, which is great! I had IDC and no positive nodes either,but the difference between you and me is mine actually broke out of the duct and became invasive, thus the reasoning of Tamoxifen being necessary for me.
Hurleygirl-we started about the same time and your gonna finish before me! You look so good in the TE, I think you final results are going to be great! Keep us posted.
Kate33- How are you feeling these days, how's the new normal? You ladies who live on the West Coast are lucky you can just drive over to Las Vegas!
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Kate, Thanks for the Concentrated Weight Loss Shot info. She likes her meat but I'll get it in case she has no appetite post op.
PB, I left you a voice mail.
I'm grateful to this forum's advice and support.
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Updates Delray?
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Hi all
Im going to vegas but like I said my high school friend is going which made me decide to do it. But next year it would be great if some of us from this thread went!
I havent been posting much but I stay in touch and think of everyone! We are so lucky to have this option! I was just thinking recently how even though I dont have to wear a bra, I have to be careful because my nipples show through some of my summer tops and thought wow what a great problem to have ! Also, I think its amazing that they can get erect even though I dont have sensation....Im so happy for this thread and happy to be here for anyone considering this or in the process now. Hopefully more doctors will offer it!
By the way: Im still dating that guy: so there IS life after all this!
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Fairport, I'm so happy for you, he must be an awesome guy because you are a beautiful, strong woman. I have loved being able to go bra-less this summer, much more comfortable in the heat, and sun dresses are much easier to wear.
I will not be going to Las Vegas for the gathering, but I might be going there next summer when we take our trip out west!
PB, I got a good report from my blood work. I found out the only thing I needed to take more of is the Omega 3's. My cholesterol was a little high. I think the only tests he did was my thyroid and nutrient levels. The nutrient tests are what took so long.
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fairportlady55 - Have fun in Vegas - without all of us - just kidding. All of us on this thread should think about going next year - it would be fun to meet everybody.
Keep up the dating - that's wonderful!!
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