I'm glad you think this is all proceeding the right way! Mike is concerned about the second surgery - he is thinking I should talk to the oncologist first (?) But I think the critical issue is to be sure all questionable tissue - and the immediate surrounding area is gone...then I can take my time in dealing w/follow-up. It can be tough to get it all the first time since there are no visual clues - they only know *after* the path report if enough surrounding tissue was taken....
Yes, this was found on my first baseline mammo - reading the report, the BIRADS score (degree of suspicion) of 3 often is told to be monitored and re-checked in 6 months. I am truly thankful I had an aggressive radiologist read my films! I have what is considered a "weak" family history - maternal aunt and maternal grandma both diagnosed way post-menopausal - on paper should only increase my lifetime risk 1-2%. There may be a hereditary component (yet to be identified) but surgeon said highly doubtful for BRCA gene because of the late age of onset of relatives - BRCA people usually have family members diagnosed in their 30's and 40's...
I was also shocked to see that the margin of error for mammogram accuracy is about 10%!! I can't tell you how many people @ breastcancer.org had a clear mammo less than 6 months before diagnosis! Scary! The latest news is that MRI is more accurate, esp. for younger women with dense tissue...
So all of this has me very hesitant about what is likely to be recommended to me (which is close monitoring to catch it early again *if* it recurs - quite frankly this frightens me to death,- along with radiation and Tamoxifen). I'm not a meds fan, and Tamox has some "real" risks, as does radiation...though it is not usually recommended unless there is a larger area of involvement, I am honestly considering treating surgically, then I don't have to do anything else! I'll have to get stats from the onco - but the fact that there was additional atypia (another risk increaser) found in the tissue, makes me not want to mess around with this! There is a sense of control in taking the "pre-emptive strike" approach!
I am young and (basically) healthy, and would probably tolerate a bilateral with immediate reconstruction very well. I think it would give me immense peace of mind! I watched Oprah interview Rene Syler last week, and I really identified with her dilemma. Bottom line is I have young kids and I need to do whatever will absoutely minimize my risk of having to deal with this down the road...
Mary
PS - since my first surgery - I have had no MC issues - I've even reintroduced dairy! First I thought it was the Darvocet - but I only took 2, and it's been over 2 weeks since then. Do you think "C" could have an immune-system regulating component? It is SOOO bizarre!!!! Esp because the stress is still there - and that *always* gives me at least a "hint" of trouble...
Polly-to answer your questions...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Mary,
I am totally impressed to see that you have REALLY been doing your homework. Also that you are considering all options in order to find the best "fit" for you. I think I, too, would probably opt for the more aggressive options - I say "think" because one doesn't know for sure until faced with the problem. You are truly an inspiration in the way you are dealing with this and have my utmost respect and admiration.
Yes, you WERE lucky to have an aggressive radiologist. Otherwise, as you point out, you could have gone at least another 6 mo. with the atypia. Scary. If you opt to keep your boobs, I am sure you will have only MRIs from now on. I personally know two people who had a clear mammo within 6 mo. of their cancer diagnosis - in fact, one was only 4 mo.
The best part of all of this is that your atypia was discovered SO early. How very fortunate that all of these factors came together for you. I think your guardian angel has been working overtime. (I just looked for an angel emoticon but couldn't find one - maybe I am missing it?)
Do any of your newfound buddies in the breast cancer support arena have any suggestions in addition to the standard medical practices? I am wondering if there is any good info about nutrition, particularly. Do the docs think your atypia is estrogen-dependent, for example, and that you should avoid soy? I have read that shifting your diet away from the omega 6 fats (that are so prevalent in the standard American diet) and toward the omega 3 fats (salmon, walnuts, etc.) is beneficial for those with cancer. (I think I read a study showing that cancer cells multiplied rapidly in the presence of omega 6s.).
Thinking of you and sending positive thoughts for Wed.
Love,
Polly
P.S. Interesting about the dairy. Your idea about immune mediation is intriguing and certainly could have some merit. You're not eating gluten again, are you?
I am totally impressed to see that you have REALLY been doing your homework. Also that you are considering all options in order to find the best "fit" for you. I think I, too, would probably opt for the more aggressive options - I say "think" because one doesn't know for sure until faced with the problem. You are truly an inspiration in the way you are dealing with this and have my utmost respect and admiration.
Yes, you WERE lucky to have an aggressive radiologist. Otherwise, as you point out, you could have gone at least another 6 mo. with the atypia. Scary. If you opt to keep your boobs, I am sure you will have only MRIs from now on. I personally know two people who had a clear mammo within 6 mo. of their cancer diagnosis - in fact, one was only 4 mo.
The best part of all of this is that your atypia was discovered SO early. How very fortunate that all of these factors came together for you. I think your guardian angel has been working overtime. (I just looked for an angel emoticon but couldn't find one - maybe I am missing it?)
Do any of your newfound buddies in the breast cancer support arena have any suggestions in addition to the standard medical practices? I am wondering if there is any good info about nutrition, particularly. Do the docs think your atypia is estrogen-dependent, for example, and that you should avoid soy? I have read that shifting your diet away from the omega 6 fats (that are so prevalent in the standard American diet) and toward the omega 3 fats (salmon, walnuts, etc.) is beneficial for those with cancer. (I think I read a study showing that cancer cells multiplied rapidly in the presence of omega 6s.).
Thinking of you and sending positive thoughts for Wed.
Love,
Polly
P.S. Interesting about the dairy. Your idea about immune mediation is intriguing and certainly could have some merit. You're not eating gluten again, are you?
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
ROFL Polly!
No I am not eating gluten! I started adding in a bit of dairy to alleviate the constipation I was experiencing without having to do meds. Plus I was doing yogurt since they did IV antibiotics prior to surgery. Over time I went from pretty harshly constipated to just "normal" - not what I expected - but I'll take it!
There *is* a lot of talk about nutrition/soy etc. I'm not spending much time in that forum @ bc.org, however. Right now I'm dealing with "newly diagnosed" and "treatment decisions", but once things get going, I'm going to be doing more dietary research for sure! At the support group meeting I had to explain MC as I politely declined a piece of homemade lemon cake...the facililtators mentioned they try and bring something healthy, non-processed and w/o preservatives. They also drink bottled water...
Knowing the fallibility of technology is what has me concerned about the "monitoring" game plan...most people seem to have an MRI and mammo alternate every 6 months. I basically "won the BC lottery" by having pre-invasive cancer cells found in a small area of one duct which did not require checking lymph nodes and has 0% of having infiltrated any breast tissue. What would be my chances of being that lucky again in the chance of a recurrence, esp. since I would need to rely on technology for finding it? I also feel like I would be living life in 6-month increments, which is no way to exist!
Still waiting on estrogen-receptor status - that was not in the path (they thought it had been done during the biopsy, but there was insufficient tissue to test during the biopsy - so eventually we will get it..) they generally give Tamoxifen to premenopausal women, regardless of the receptor status of the tumor - it is shown to be protective - especially against a new primary tumor in the other breast (another
risk I am uncomfortable with...)
Saw the surgeon yesterday for my pre-op. I can tell he is very "pro-breast conservation". In fact they presented my case @ tumor board last week and he said they were unanimous that radiation, tamoxifen and monitoring were completely appropriate given the small size of involved tissue. The oncologist I go to see next week was there (@ tumor board), so I have the "upper hand" so-to-speak, since I know what he's going to recommend, but he does not know *my* feelings - so I need to carefully lay out my reasoning to see if I can get his buy-in. If not, I'm setting up another consult w/someone else anyways, so I'll move on.
I saw no need to tell my surgeon I disagree with his proposed treatment, since he is going to be cutting me open tomorrow! 
If I end up going w/the mastectomy, I will use a breast surgeon and plastic surgeon anyways - the current guy is a general surgeon...
No one knows what they would do in this case unless faced with the decision. A lot of women over there (bc.org) are distraught over the idea of losing a breast and want to conserve it if at all possible. I just happen not to be one of them! I did not know this about myself until I was diagnosed! Spending most of my life as an A-cup gal (until I had kids), my :boobs: are a very small part of my identity. My husband is 100% supportive of whatever I need to do for peace of mind - says he married me for my brains, anyways
Wow- this may be one of my longest posts ever....I tend to get "chatty" waiting for surgery...
Mary
No I am not eating gluten! I started adding in a bit of dairy to alleviate the constipation I was experiencing without having to do meds. Plus I was doing yogurt since they did IV antibiotics prior to surgery. Over time I went from pretty harshly constipated to just "normal" - not what I expected - but I'll take it!
There *is* a lot of talk about nutrition/soy etc. I'm not spending much time in that forum @ bc.org, however. Right now I'm dealing with "newly diagnosed" and "treatment decisions", but once things get going, I'm going to be doing more dietary research for sure! At the support group meeting I had to explain MC as I politely declined a piece of homemade lemon cake...the facililtators mentioned they try and bring something healthy, non-processed and w/o preservatives. They also drink bottled water...
Knowing the fallibility of technology is what has me concerned about the "monitoring" game plan...most people seem to have an MRI and mammo alternate every 6 months. I basically "won the BC lottery" by having pre-invasive cancer cells found in a small area of one duct which did not require checking lymph nodes and has 0% of having infiltrated any breast tissue. What would be my chances of being that lucky again in the chance of a recurrence, esp. since I would need to rely on technology for finding it? I also feel like I would be living life in 6-month increments, which is no way to exist!
Still waiting on estrogen-receptor status - that was not in the path (they thought it had been done during the biopsy, but there was insufficient tissue to test during the biopsy - so eventually we will get it..) they generally give Tamoxifen to premenopausal women, regardless of the receptor status of the tumor - it is shown to be protective - especially against a new primary tumor in the other breast (another
risk I am uncomfortable with...)Saw the surgeon yesterday for my pre-op. I can tell he is very "pro-breast conservation". In fact they presented my case @ tumor board last week and he said they were unanimous that radiation, tamoxifen and monitoring were completely appropriate given the small size of involved tissue. The oncologist I go to see next week was there (@ tumor board), so I have the "upper hand" so-to-speak, since I know what he's going to recommend, but he does not know *my* feelings - so I need to carefully lay out my reasoning to see if I can get his buy-in. If not, I'm setting up another consult w/someone else anyways, so I'll move on.
I saw no need to tell my surgeon I disagree with his proposed treatment, since he is going to be cutting me open tomorrow! If I end up going w/the mastectomy, I will use a breast surgeon and plastic surgeon anyways - the current guy is a general surgeon...No one knows what they would do in this case unless faced with the decision. A lot of women over there (bc.org) are distraught over the idea of losing a breast and want to conserve it if at all possible. I just happen not to be one of them! I did not know this about myself until I was diagnosed! Spending most of my life as an A-cup gal (until I had kids), my :boobs: are a very small part of my identity. My husband is 100% supportive of whatever I need to do for peace of mind - says he married me for my brains, anyways
Wow- this may be one of my longest posts ever....I tend to get "chatty" waiting for surgery...
Mary
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
Mary, not to jump in on your conversation with Polly, but I just wanted to encourage you to keep the choice of treatment yours. My Mom chose the double masectomy route too because of the "when next" factor. And, being luck enough hers was caught early, hadn't spread to the lymph nodes, etc. Why try to be that luck again! Gosh, I don't think I'd want to worry about it either. That was a big factor in my decision to have the complete hysterectomy as opposed to just fibroid ablation or wait and see.
As an aside, my mom also chose to go no reconstructive surgery. She thought she'd be comfortable without boobs, but then when t-shirt season arrived, she realized she was a bit self conscious about it (she was diagnosed in November and had her surgery before Christmas that year so it was several months of warm sweaters and other bulky clothing). She has prostheses now. And she still sees her oncologist every year and he checks her incision for lumps.
2nd and 3rd opinions are definately warranted.
Katy
As an aside, my mom also chose to go no reconstructive surgery. She thought she'd be comfortable without boobs, but then when t-shirt season arrived, she realized she was a bit self conscious about it (she was diagnosed in November and had her surgery before Christmas that year so it was several months of warm sweaters and other bulky clothing). She has prostheses now. And she still sees her oncologist every year and he checks her incision for lumps.
2nd and 3rd opinions are definately warranted.
Katy
Katy-
I appreciate your input! It's nice to see my feelings on the matter are not emotional and overreactive! Some people have the right temperament for "wait-and-see" approaches. I know for a fact I am not one of them. I also know if I were convinced to go with less aggressive treatment, and then had a recurrence, I would have a "real" problem with trusting my doctor, and would probably have a lot of anger, as well...
I know what I want and I am the customer -thanks for your encouragement to stick to my guns!
Mary
I appreciate your input! It's nice to see my feelings on the matter are not emotional and overreactive! Some people have the right temperament for "wait-and-see" approaches. I know for a fact I am not one of them. I also know if I were convinced to go with less aggressive treatment, and then had a recurrence, I would have a "real" problem with trusting my doctor, and would probably have a lot of anger, as well...
I know what I want and I am the customer -thanks for your encouragement to stick to my guns!
Mary
Procedure went fine this morning - I had a bit of a "pre-op freak-out" but my husband was great , and the nurse brought me plenty of tissues! I didn't sleep well last night, and had a dream I couldn't wake my daughter! Obviously I was having anxiety about being put under... Last time I wasn't concerned about the procedure at all - more worried about pathology...
I also found out I'm highly positive for both hormone receptors, so we'll have to see the oncologist's recommendation given I am probably (given my mom's pattern) 12-14 years away from menopause...It sounds like I'll also be joining you "no soy" folks!
So the oncologist Monday, and post-op w/the surgeon on Wednesday to find out if margins are clear. I guess @ the doctor's office is how I am spending my Spring Break - oh well!
Mary
I also found out I'm highly positive for both hormone receptors, so we'll have to see the oncologist's recommendation given I am probably (given my mom's pattern) 12-14 years away from menopause...It sounds like I'll also be joining you "no soy" folks!
So the oncologist Monday, and post-op w/the surgeon on Wednesday to find out if margins are clear. I guess @ the doctor's office is how I am spending my Spring Break - oh well!
Mary
Mary!
You're baaaaack! YAY! Glad all went well. You certainly are entitiled to a pre-op freakout (love your way with words!). I'll be waiting with everything crossed to hear the path report.
Interesting about the hormone recptors. And don't worry - of all of my intolerances I think soy was the easiest to give up. Does anyone really LIKE soy anyway? LOL! It tastes like cardboard, IMHO, no matter how you try to make it taste good.
Meanwhile, rest up and RELAX.
Love,
Polly
You're baaaaack! YAY! Glad all went well. You certainly are entitiled to a pre-op freakout (love your way with words!). I'll be waiting with everything crossed to hear the path report.
Interesting about the hormone recptors. And don't worry - of all of my intolerances I think soy was the easiest to give up. Does anyone really LIKE soy anyway? LOL! It tastes like cardboard, IMHO, no matter how you try to make it taste good.
Meanwhile, rest up and RELAX.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Hi Mary,
Glad to hear everything went well and I agree with Polly, you are very much entitled to a pre-op freakout. Hope the follow-ups and data they give you will put you fully at ease.
Menopause is not that bad - get a hysterectomy and it is instant. Also I am one of those people who love tofu and soy but it is now gone from my diet too.
Love, Maggie
Glad to hear everything went well and I agree with Polly, you are very much entitled to a pre-op freakout. Hope the follow-ups and data they give you will put you fully at ease.
Menopause is not that bad - get a hysterectomy and it is instant. Also I am one of those people who love tofu and soy but it is now gone from my diet too.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!