TRIPLE POSITIVE GROUP
Comments
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Dancetrancer...
I am trying to understand your diagnosis , grade etc.and am having difficulty. Was your grade changed after Bmx?0 -
shore1 - What is the risk of using Tea Tree Oil, and how is is helping your nails? I am getting ready to start TCH on 2/13, and I am a little worried about my nails (although not very, in light of all the other stuff to worry about).
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fluffqueen thanks!!! I am going to try that website
From what I can see most of the popular department store, antiwrinkle facial creams are loaded with toxins!! Wonderful!!! 0 -
I asked my nurse about eating soy and she said no problem. Although the question was not in the context of soy interfering with treatment...it was will eating soy cause cancer.
I used to get Vitamin E oil at Walgreens.
Peggy
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christina - tea tree oil is estrogenic. You would be better served by icing your nails during the Taxotere portion of your tx - to prevent the lifting. I used bags of frozen peas applied to hands and feet (on top of the nails) starting 10 minutes before the infusion starts and for 10 minutes beyond.
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SpecialK I am convinced that the peas don't keep your fingers cold enough. Nail lifting is rare so even if you didn't ice your fingernails might have been fine.The lifting first started with my toenails. I did ice once they started but as you know they kept getting worse and worse. I had a pretty serious case of the lifting. If the pease worked I would think my fingernails wouldn't have been as bad.0
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I'm just joining this thread - can someone tell me what the issue is with tea tree oil? I finally found a deodorant that actually works on odor - but it contains tea tree oil. Am I swapping one problem - aluminum - for another? Does the tea tree oil cause an estrogenic response? Ugh!!! Please advise. Also - I thought soy was good for you - I started drinking soy milk on my oatmeal - even though I can't stand the stuff - because I thought it was better than cow milk - please help me make sense of all this.
thanks!
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My MO told me to avoid eating soy.
Even though I am pretty sure I am post-menopausal, he put me on Tamox for 2 1/2 years and then is going to run my hormone panel and probably change me to Arimidex or Femara.
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lago - I lost a toenail completely and a fingernail completely, even though I iced. If I had not iced I think it would have been worse. I used the peas because my center didn't have any booties/gloves and it was the easiest option. Maybe crushed ice in bags is better?
lucky - how much estrogen you want to add to your diet and on your skin through food and products depends on how much risk you are comfortable with. You might want to switch to almond milk if you are not wanting to drink either cow's milk or soy milk. I think most oncs don't want us to add soy products.
wendyspet - I have read some info on extending the anti-estrogen benefits by starting with Tamoxifen (even for some post-meno) and then switching to an AI. This provides more than 5 years of protection.
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Nails - There is published data showing benefit for icing fingers (and toes) to prevent nail damage from taxotere (also called docetaxel) - LINK
I think it depends on how you use the peas - I put mine in insulated lunch sacks from target and my fingers and toes were super cold, if I didn't check them they would get numb.
Here is a picture of the type of gloves used in the research article in the link above
Elasto-gel Hypothermia Mitts for nail loss onycholysis - AMAZON
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Nails - 2 - There is a new article about the subject LINK, I have not read it yet
Support Care Cancer. 2011 Nov 16. [Epub ahead of print]
Degree of freezing does not affect efficacy of frozen gloves for prevention of docetaxel-induced nail toxicity in breast cancer patients.0 -
I just spoke to an old friend who had bc 12 years ago. She was on Tamoxiphen for 5 years and is now on Femara. She is a PHD prof of biophysics with an expertise in hormonal gene expression specialty in fertility. I hope to see her next week to ask her more.
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Christina, yes, tea tree oil is estrogenic, but my onc said no problem to use it for this purpose. I also had taxol, and from what im reading, taxotare seems harder on the nails. You're right, in the big scheme of things nails are a small problem, its just one more I don't want to deal with. Now that my chemo is done, i'll make some changes as far as food and products but am convinced I would drive myself crazy trying to eliminate all possible "bad for bc" stuff. Good luck with your TCH. Oh and btw, chemo nurse told me to soak hands & feet in white vinegar and water for a few minutes each night it prevents infections from starting in nailbeds which get damaged from the chemo.
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Regarding ER+/Tamox/HER2+ "cross talk" issue: my onc said, yes, if you are HER2+, they have shown that Tamoxifen still works, but just not quite as effectively as if you were HER2-.
ashla, my story is extremely convoluted, even hard for me to keep track of. You asked, so here it is...sorry it is so lengthy:
August 2011 - dx with DCIS L breast multicentric via 2 biopsies, R side clear via mammo/MRI
September - BMX with initial fat grafting reconstruction
October - initial path analysis: L DCIS Grade 2 and close margins, R side clear; advised no radiation needed for close margin
late October - 2nd opinion path done b/c I was worried about ADH in retroareolar tissue (surgeon had spared areola on L side) and close margins. 2nd opinion said DCIS L retroareolar, plus found small foci of DCIS in R breast with close margins. Recommendation: remove L areola, bilat rads
November - first pathologist wanted 3rd opinion due to discrepancies in pathology reviews. 3rd opinion came back as supporting first pathologist's findings.
mid-November - had repeated mammo's and MRI prior to areola removal. Had areola removal surgery - path findings negative for any signs of cancer. Mammo also showed a fine linear calc on R inner breast. Surgeon not sure if this was artifact from surgery or actually a calc left in residual breast tissue after the mastectomy. She did not feel we should attempt biopsy yet b/c my breasts were still too small to get good compression with the mammo for stereotac or wire loc procedure. Advised a "wait and watch" with repeat mammo in a few months after additional reconstruction procedure completed.
mid-December - appt with radiation oncologist. Still recommends bilateral radiation, but b/c I have had different so many different path opinions that disagree as well as an opposing rad opinion and I am really upset and confused, she recommends I get a 3rd rad opinion for peace of mind.
mid-December - had 3rd rad opinion and also see med onc and surgeon at this facility - they decide to run a tumor board on my case.
late-December: have 2nd fat grafting reconstruction procedure
mid-January: find out a 3 mm area of IDC was found in my slides from my mastectomy (missed by the 3 prior pathology reviews). So this was when my Stage was changed from 0 to t1A. HER testing pending. They also say I have close margins both anterior and posterior on the L, recommend rads to L, but not for R b/c the ant margin on the R was PLCIS, the DCIS was free and clear. Also recommend I have the R calcification that was seen in November biopsied sooner rather than later.
last Thursday: find out the 3 mm are of IDC was HER2+. Had just been simulated for rads to L. Told to take off rads stickers, prepare for chemo. Then called the next day and said, no, no chemo b/c tumor so small, come back in for your rads stickers to be fixed.
Currently waiting to start rads on L, investigating 2nd opinion on chemo/Herceptin, but not sure it's how I will proceed even if offered by another doc due to the controversy in literature about tx for < 6 mm HER2+ tumors. (I have another thread going dedicated to this decision) Also working on getting set up for biopsy of the residual calc on the R.
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Dancetrancer.
Wow! I'm really trying to understand this. I'm having neo adjuvant TCH and am considering requesting a bmx so. I haven't experienced the surgery, post surgery issues like margins,lvi etc yet.
Why did you have bmx? Did you have smal breasts or was the tumor located in a particularly bad location? Your choice? What margins are you talking about if the breasts were removed? What is being radiated? The muscles?
I have so many more questions . I'm very sorry that you are having so much trouble.0 -
Ashla, I'll do my best to answer your questions:
1) I had a BMX - required on L because of multicentric DCIS (over at least half of my breast, which was small). I chose prophylactic on the R side, the small foci (2 mm) of DCIS found on the R after BMX was a surprise.
2) You have margins after a mastectomy. The margins are how close the cancer is from the edges of the specimen (aka near the skin and near the chest wall). With DCIS, you cannot see it with the naked eye, so it is impossible for surgeons to see it. If you have a an invasive tumor, they can visually see the tumor, from what I understand. Also, if you are having a skin sparing mastectomy, they leave more skin and it has to be thick enough to have a blood supply. So, there is ALWAYS, some minute amount of breast tissue left in the breast even after a mastectomy. Usually no radiation is required, but if you are one of the few unlucky like me, your cancer grew close to the skin or chest wall and then you have close margins and need radiation. There may be other reasons for needing rads after MX, but I am not familiar with them. It is rare to need it after MX, esp. after MX for DCIS. My entire breast is being radiated. This means the skin and everything down to and including the chest wall. A small part of my lungs will be hit, it can't be avoided. They will avoid the majority of my heart by using a technique called respiratory gated rads.
I hope this helps you understand and does not scare you! Most women do not have to get rads after BMX. Discuss it with your doc!
Oh, and also...make sure you ask how your pathologist stains the specimen. It should be inked a different color on the bottom, top, and each side. Mine was not. It was inked all black. This made it very difficult to tell with 100% accuracy whether my margins were close anteriorly or posteriorly.
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Dancetracer.
Thank you very much for your explanatiion and advice. Sadly you have learned a great deal about bc in just 6 months.i wish you the very best in your journey toward wellness again!0 -
Asha I must of missed your post.
Why I had a BMX. The cancer breast tumor was 6.5cm (including the DCIS but only 5.5cm was IDC) on the left side. My former breasts were small. I there was no way to preserve my breast. My other breast showed 4 suspicious spots but one in particular that the BS was concerned about. He said that would have to be biopsied every year therefore recommended BMX. We didn't even biopsy it before surgery. It ended up being LCIS (no invasive pre-cancer). My breast tissue was very dense, maybe that's why it took them 4 years to find my 6.5cm tumor. I actually had a scare 4 years earlier in the same spot so they should have found this sooner IMO.
My margin in the posterior (chest wall) region was .75 mm. Margins were clear but close in that posterior region. My Rad Onc said I was in a gray area for rads. She gave me a pass because I had such aggressive treatment. Typically for tumors above 5cm including MX they do radiation. Many women don't have to do Rads if they get the MX but not all. I'm still shocked I got a pass on radiation.
If your arms haven't been measured ask your BS or onc for a referral to a PT (physical therapist) that specializes in LE (lymphedema) especially if you are doing radiation. You need a base line measurement just incase you get LE. I didn't and I did get LE. We'll never know for sure how much my arm really swelled. My LE didn't appear till after my 4th chemo.
This forum is all about asking questions… ask away.
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As for soy, the first thing my surgeon told me at Univ of Michigan upon diagnosis was do not eat anything with soy protein isolates in it. My heart sunk. I had just been on a medical weight loss program for 5 years and conservatively consumed 5,500 protein shakes containing - guess what?? SOY PROTEIN ISOLATE! I talked to 2 nutritions who have done extensive research on soy protein isolate and breast cancer. They told me stay away especially with Triple Positive. They can't say the soy protein isolate caused my breast cancer, but said most likely it contributed to size and growth (Stage 3).
Since watching labels, can't believe how much organic stuff has soy protein isolate in it. Even chocolate. It's everywhere in the organic departments.
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I can't even buy a loaf of multi-grain bread at our supermarket that doesn't have soy flour or other soy products in it :-( So we are stuck with eating white bread...
Jennt280 -
I haven't been paying so much attention to that, now I am going to look for it!
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Oh yeah, the soy protein isolate is EVERYWHERE! It's driving me crazy.
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ugh! if it's not soy, its BPA - I'm starting to think I need to live on popcorn and broccoli for the rest of my life.
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The whole diet thing is crazy.....no sugar...no white flour....no dairy....no alcohol....no red meat...its exhauating trying to manage it all. Lol. I might starve.
Omaz-that link was great, even if it took me two hours to wade through it. Then, I sat and clicked through the studies on there.
Bucky-I really like their products. Not all of them are free of soy. Pm me your email and I will send you the ingredient list of all their products they sent me.
Regarding nails....I have used peas and crushed ice in bags. I like peas best, they feel colder and stayed jammed together better. One tip I got off another board...for your feet, put your feet into a neoprene lunch bag and put the bags on top of toes and zip them in. Peas/ice stays cold, and it doesnt slide around. Gives the nurses a laugh too. I have continued icing with just herceptin as a precaution. I missed one time. My nails are very soft and break easy and feel tender. I hope they get through the next three herceptins inact.
My manicurist says I need to treat them as jewels, not tools! Lol0 -
Lago..
Thank you . You ladies have taught me so much . I am so grateful to you all. My pre surgery meeting is Feb 15. And at this point anyway it seems to be my call. Of course during surgery and after final pathology that may change. It's not like I love these big boobs anyway! Ihave thought of breast reduction for years. It's just the prospect of such major surgery and recovery that makes it harder.
My mo who does not recommend bmx says no matter which way I choose, I'll be worrying about it for the next 30 years!0 -
Asha I don't worry every time I get a mammogram/call back because if you do a bmx you don't do mammos.
Seriously some of us worry more than others. I only worry if I have a pain that I can't explain for more than a couple of weeks. So far I have none other than the slightly stiff finger/toe joints in the morning from Anastrozole (generic Arimidex)… therefore I'm not that worried. I mean I don't worry about having heart issues yet my dad has a pacemaker.
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i hate when i get behind on this forum X(
i wanted to ask you ladies if any of you has had times where all your axillary lymph nodes get a little hard
i have one little hard in each side and one larger one but softer in my arm
both PS/PCP/BS believe not serious but to watch it....
not sure what to think.... any thoughts?
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Lago..
I'm fortunate that I was always the healthy one . Haven't even had a cold in two years! Take no meds. And my huge extended family has no history of bc . My father just passed away at the age of 91 and I always thought I took after him..I wasn't a worrier before but this has rocked my whole psyche. I think I may beome a worrier now.
Btw..when my bc said either way I would be worrying or 30 years....I 'm 63yearsold!
It seems all of you are very young . It must be so much more difficult for you all . Just being thrown into menopause in addition to chemo....you are all my inspiration! I keep saying all these ladies have made it through this ordeal. I can do it too.0 -
I meant mo...not bc...chemo brain.
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Ashla I am the breast cancer history in my family. The only meds I'm on is the Anastrozole (generic Arimidex). My dad is turning 80 this year. Yes I was tossed into menopause (I was peri) but it was a breeze compared to what my sister went through naturally. I had some hot flashes, or shall I say warm flashes between 2-5am when I was on chemo. By the time I started Anastrozole the flashes were gone… I think. I mean I do get hot once in a blue moon but I might just be hot not flashing. So mild.
BTW I turn 4 9+2 on Tuesday. Not so young. My husband is your age so you are not so old.I celebrated with another bc.org gal who has the same birthday date. She's turning 39+1. Now that's young to be going through this.
BTW never got chemo brain. I still take Acetyl-L-Carnitine. It is a memory booster.
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