Calling all TNs
Comments
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Genetic testing is next for me. How many selected to do genetic testing???
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fighter_34-i did the brca gene test and it came back fine so now i am going back to MD Anderson in march to do further genetic testing. they say it will go further in depth to see if they can figure out why i got bc at 28. good luck with everything!0
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fighter_34- I did the genetic testing too and am waiting for the results. I only hoped that the results would have come in before my surgery next tuesday......0
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Fighter- I had the test. My onc told me because i was dx under the age of 50 was the number 1 reason to have it done. Also, I had both IDC and DCIS in the same breast and I'm TN. My test came back BRCA 1 neg and BRCA2 a variant of unknown significance- which we are treating as negative- because this particular mutation has only been seen in 43 people so it has not been researched enough to know if it is linked to cancer. Most TNs that test positive for BRCA test positive on BRCA1; however, I know of at least 1 on this thread that is TN and BRCA2 positive.
Hope this helps a little.
BTW- I had no family history- just unknown history on my father's side.
Tiffany
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I just sent my papers in and waiting for an app't for genetic testing
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Rough night; my leg looks like a tree trunk! Being good, doing my ROM exercises... carefully. This is the first surgery that has me regularly taking pain meds...ouch!
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HeidiToo- Take good care of yourself Heidi....
HUGS. XX
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Fighter I did the test and came back BRCA1 +
It is always good to know.
Today is my youngest daughter Birthday . I can't believe she is 14. Time just passed me by. I know I am bias but she is truly a wonderful person inside and out. I feel blessed to be her mother.I wanted to insert her picture but could not figure out how.
Have a great day ladies.
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Thank you all for the good wishes. I'm in a bit of a funk - I HATE not knowing what is going on with my nodes and having to wait 3 weeks for surgery - but it cheers me to come and read this thread. To celebrate, my in-laws are watching the kids next week and DH is taking me with him to NYC. I plan on spending hours by myself wandering the Met and the MOMA while DH is working, and we are going to eat at some ridiculously priced restaurant, and I am going to shop without a care! Time to get out of this funk
Cleo - I'm so sorry you are joining us under these circumstances. I'm not familiar with a recurrence in the leg node, but I hope the new treatment works well.
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Fighter - I had the genetic test done the week I was diagnosed, due to age (41), TN status, and not much history on father's side. Thankfully I was negative, but it was worth it. My insurance didn't give me grief about it.
Lovelyface - I am so happy to hear everything is good! I also believe positive thoughts and energy are really important - I accept any kind from anyone I meet, lol.
Jenn - keeping you in my thoughts, and really hoping in a week or so we'll all be griping for you about how you had to go through all these tests just to find out it was nothing.
Heidi - good to hear you are sticking to doctor's orders! Don't be a hero and take those meds!0 -
Thanks for your input ladies!
Claiming great results so that I can move to the final phase exchange surgery and be DONE. Not thinking about anything else other than being done. I even applied for a new job in my division it's time to re-direct my energy other places.
MonikaV lovely daughter.
That's why I am doing genetic testing I want my baby to be informed so that she can make intelligent decisions regarding her health. I am already picky about both my kids diet, but her's more so.
Do you guys find yourself being picky about your kids DIET now more than ever before???
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Fighter: I had genetic testing also. 43 at dx, no family history on my mothers side at all for any bc or ov ca, fathers side is a bit harder, but my paternal gma didn't have anything at all other than a huge slow growing cancer on the side of her face. I have a half sister who had bc at 41. I tested BRCA2+, sister tested negative, one of my daughters is negative, one positive. Absolutely no clue where this came from, BUT the BRCA2 can cause cancers on the face so still believe it came from dad's side. I decided on bilat mx after the results and will have ooph in 2 weeks.
Kids diets... my girls are both adults. I've told them what they should stay away from, but I don't think it's changed their eating habits. My eating habits haven't changed a whole lot. I always have eaten more veggies than meat, and never did eat a lot of carbs. I am guilty of sugar though... chocolate especially. I know people who eat the wrong things their entire lives and never get cancer, and I've heard of others who always ate organic or vegan and ended up with cancer anyway. My way of thinking is this... I will eat the best I can since knowing I've had cancer, but so far I haven't gone completely organic nor have I stopped eating chocolate completely.
It's not just diet though. It's everything... exercise, eating habits, mental outlook, sleep, and genetic makeup. Even the air we breathe is filled with things you don't even want to know about. We unfortunately have polluted the earth in every way possible and have used chemicals/preservatives/additives in just about everything. It's really hard to tell what may or may not be causing cancer to appear with more frequency and at younger ages. And I don't know if you've noticed, but studies are often contradictory. Not only that, but scientists and researchers in general one moment will say "don't eat or do this" and the next moment they change their mind.
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I didn't have genetic testing done. I don't qualify for the testing according to the criteria outlined under our provincial healthcare plan as there is no history in my family.
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Jenn- I'm thinking of you and sending positive (((vibes)))).
hiedi- Heal fast, girlfriend! I'll try and look up some jokes in the mean time.
MBJ- This thread isn't the same with out your daily post.
Fighter- Congratulations!
I'm leaving for New York tomorrow. I'm going to try and pretend like I am normal, healthy and sane. LOL. I plan to draw, draw, draw. Hopefully it will take my mind off of everything. I'm looking forward to dressing up and having a blast. I will not wear my wig inspite of a man telling me last Friday night "You used to look so beautiful. Are you going thru your lesbian stage?" So if I were a lesbian I wouldn't be beautiful or I'm not beautiful now? LOL. Funny, because I feel so beautiful and sexy even with only one boob and I'm thrilled to have this inch of hair on my head. The only way to express my feelings is to say "F**K 'em" and F**k cancer, hope I didn't offend anyone by this.
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I forgot to mention that I hope everyone has a great week. We are obviously living so that is a good thing.
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Have fun LJ...stay off the 10 o'clock news ok?
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LJ- no, you didn't offend me... but I hope you did to that *sshole who made that comment. What a jerk!
Man, you guys should see me with this walker and all my moans and groans. You'd all have a really good laugh! I look, feel and sound like a 90 year old.
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This should be good news for future BC patients!:
Axillary Lymph Node Dissection Doesn't Improve Breast Cancer Survival
Elsevier Global Medical News. 2011 Feb 8, MA Moon
EXPERT COMMENTARYLee Schwartzberg, MD, Editor-in-ChiefThis study is a profound example of the way research can shatter long-held beliefs and shift practice patterns overnight. Axillary lymph node disection (ALND) has long been the standard of care for breast cancer patients with positive sentinel lymph node biopsy (SLNB). In the ACOSOG Z0011 trial, women with 1 or 2 positive SLNs has the same outcome without ALND as those with a full ALND, meaning that many patients can now be spared an operation with risk of significant long term morbidity. Many factors may have contributed to the lack of impact of leaving positive LNs in the axilla including better radiotherapy and adjuvant systemic chemo and endocrine therapy. Most importantly, survival was excellent in both groups, reflecting a march towards the ideal of excellent outcomes with minimal toxicity of treatment.News ArticleAxillary lymph node dissection did not improve overall survival or disease-free survival in women with T1-T2 breast cancer who were found to have limited metastasis on sentinel node dissection, according to a report in the Feb. 9 issue of JAMA.In the American College of Surgeons Oncology Group's Z0011 trial, survival was nearly identical between women who underwent lumpectomy and sentinel node dissection alone, followed by adjuvant chemotherapy and tangential-field whole-breast irradiation, and women who underwent axillary node dissection when sentinel node biopsy revealed limited metastasis, followed by the same chemotherapy and irradiation."The findings from Z0011 document the high rate of locoregional control achieved with modern multimodal therapy, even without axillary lymph node dissection," said Dr. Armando E. Giuliano of John Wayne Cancer Institute at Saint John's Health Center, Santa Monica, California, and his associates.The results also imply that axillary node dissection is no longer warranted in such patients, because "the only additional information gained ... is the number of nodes containing metastases. This prognostic information is unlikely to change systemic therapy decisions and is obtained at the cost of a significant increase in morbidity," the investigators noted.Forgoing the standard practice of axillary node dissection when sentinel nodes reveal metastasis constitutes a practice change that "would improve clinical outcomes in thousands of women each year by reducing the complications associated with axillary lymph node dissection and improving quality of life with no diminution in survival," they concluded.The need for axillary node dissection when sentinel nodes are found to have metastasis has been called into question for years, and use of this "standard" practice has declined. Until now, "no study has conclusively demonstrated a survival benefit or detriment for omitting axillary node dissection."The ACS Oncology Group's Z0011 trial, begun in the late 1990s, was intended to definitively answer that question. The phase III "noninferiority" trial involved 891 women who were followed at 115 centers after undergoing lumpectomy and sentinel node dissection revealing metastasis. These subjects were randomly assigned to undergo standard axillary node dissection (445 patients) or no axillary node dissection (446 patients), followed by whole-breast tangential-field radiation (not third-field nodal irradiation) and whatever adjuvant systemic therapy their treating physicians deemed necessary.The trial's enrollment was halted early in 2004 "because of concerns regarding the extremely low mortality rate." It was determined that accrual of more patients would not alter the survival findings, and final follow-up for the analysis was completed in 2010.After a median of 6 years of follow-up, there were 94 deaths. The 5-year overall survival was 92.5% with sentinel node dissection alone and 91.8% with full axillary node dissection, a nonsignificant difference.The 5-year disease-free survival rate was 83.9% with sentinel node dissection alone and 82.2% with full axillary node dissection, also a nonsignificant difference.These results were consistent across several subgroups of patients, regardless of patient age, tumor size, tumor hormone-receptor status, or which adjuvant therapies were received.The two study groups did differ significantly in morbidities related to lymph node dissection. The rate of wound infection, axillary seromas, and paresthesias was markedly higher for women who underwent axillary node dissection (70%) than for those who did not (25%). Lymphedema also was more common with axillary node dissection."The excellent local and distant outcomes in this study highlight the effects of multiple changes in breast cancer management" in recent years, including "improved imaging, more detailed pathological evaluation, improved planning of surgical and radiation approaches, and more effective systemic therapy," Dr. Giuliano and his colleagues said (JAMA 2011;305:569-75).They emphasized that this trial did not include patients who had mastectomy, lumpectomy without radiation therapy, partial-breast irradiation, or whole-breast irradiation in the prone position (which would not treat the low axilla). In such patients, "axillary lymph node dissection remains standard practice when sentinel lymph node dissection identifies a positive sentinel lymph node," the researchers said.According to Dr. Grant Walter Carlson and Dr. William C. Wood of Winship Cancer Institute, Emory University, Atlanta, the trial "definitively showed that axillary lymph node dissection is not beneficial." Even though 27% of the women who underwent axillary node biopsy were found to have additional lymph nodes containing metastases, the axillary recurrence rates were similar between the two groups."Survival was independent of lymph node status and was so good in both groups that longer follow-up has little likelihood of demonstrating any difference between the [two] groups," they noted in an editorial (JAMA 2011;305:606-7)."Taken together, findings from these [and other] investigators provide strong evidence that patients undergoing partial mastectomy, whole-breast irradiation, and systemic therapy for early breast cancer with microscopic sentinel lymph node metastasis can be treated effectively and safely without axillary node dissection," they said.Dr. Carlson and Dr. Wood reported no financial conflicts of interest.The study was supported by the National Cancer Institute. The researchers reported having no financial conflicts of interest.0 -
Are any TNs going to Vegas?
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Fighter - I was tested for the BRCA gene, my doctors suggested it due to my age. My insurance covered it all. It turned out I was negative. If it was positive I would have had my ovaries out.
No family history of cancer. I have 2 sons, no daughters, but I've been trying to find out if there are any cancer implications for their future due to my diagnosis. So far, no definitive answers. I try and make them eat more fruits and veggies, though one of them is a picky eater and hates everything! I recently banned soy milk from the house.
laura - are you an artist? I like to paint. Have a good trip!
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OMG, laura jane. I cannot believe that man said that you. I wonder about people some times. And not at all offended by you comments - you are right. Enjoy your trip. I love NY.
So, totally off subject, but here is something positive I have been thinking about this week as I wrap up rads and head into the "wait and see if it comes back" phase. I understand that 3 years is the high risk period and after 5 there is only a minimal chance of recurrence. So, I have decided to celebrate 5 years by taking a leave of absence from work and living in Italy for a few months. I have visited several times and always dreamed of living there. That will be my reward for beating this thing. If only it were not 5 years away!!
But I am going to need the five years to ease my boss into this . . . lol.I have decided to do more of what I want to do from now on. . . no more "someday."
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Irr-what a wonderful idea!!! I am going to have to think of something neat to do on my 5 yrs anniversary too! btw, what date are you going to use... last chemo? first checkup?
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Thanks! I am really excited. I am going to work out a savings plan for it this weekend. Everyone should do something big to celebrate . . . it is a huge accomplishment!
I am thinking surgery date. Isn't that the date that the survival (ugh) statistics run from. I choose to believe I was cancer-free as of surgery.
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riley702: thanks so much for the detailed info about your treatment regimen. mine was not as extensive as yours. i had 9 taxol out of 12(suspended due to infection ,dose reduction and low response. switched to AC and completed prior to surgery. completed 33 radiations and was to complete suspended chemo with 3 Abraxane. with the new lumps we switched to Xeloda for which i shall complete the first cycle tomorrow and still worried.Had a follow-up visit with the BS today on the groin excision of last week but expected to fully heal in a couple of days. we are also expecting the tissue anlysis from the research center for a treatment match.
suze35 : thanks also for your insight. i remain positive and optimistic towards my treatment.
to all other ladies, let's hang in there and to support one another.
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Irr- that's why we took the horses and sailboat to Acadia last summer. It had been something we'd really wanted to do and after all the BC crap we took it off the back burner and made it happen.
Hindsight being 20/20 though, I really had not regained my full strength & endurance back by then so, in my naivete, I thought I'd be carriage driving in the mornings and sailing in the afternoons.
That didn't happen, but we adjusted our plans to suit my level of strength and got in a lot of good drives and sails anyway (just not EVERY day).
I found it really helped me get through treatment to have something so special to look forward to.
Good for you for having a plan!
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PS- You guys should have seen my horses when I hobbled out to the barn tonight while hubby fed. You'd have thought they'd seen an Alien.
Come to think of it, maybe they did. Remember this?:
976.502.410.8 (etc.)
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That sounds terrific heidi. It is good to have something to look forward to. I was supposed to go to greece for two weeks in september but had to cancel it because of my diagnosis. I am now going in may, so that is my end of treatment treat. I am so looking forward to it. But for the 5 year I am going all out . . . I hope I can work it out to go for two months. My boss is going to flip . . . he really is. But the way I figure it is that plenty of my coworkers have taken 2 or 3 maternity leaves for 12 weeks . . . something I have never done. Why can't I take 8 weeks leave for surviving cancer? Especially when I ended up working full time while treating for it . . .really thought I was looking at 3 months off when I headed into it. Reasonable, right?
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Fighter~ I had the BRAC testing and it came back negative. I am 28 and was diagnosed at 27 with no family history. There is another test called the BRAT test which test a different sequence than the BRAC does. My MO wants me to get it done. She said she recently had a patient with no family history that tested negative for BRAC but positive with the BRAT. My insurance doesn't cover it and it's a $700 test, so I'm waiting to be able to get that done.
Minxie~ I also have a son (no daughters) the way I understood it from what my MO said, a male still has the likelyhood of getting cancer although it is very very low, but they can still pass it to their daughters if they were to have kids.
LJ~ Hope you have a great time in NY!
Irr~ I LOVE your idea of how you are going to celebrate!!! I know I want to do something big as well, but I haven't decided what that is yet!!
Mari
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When I got my dx and was about to start chemo I asked my onc if we needed to cancel the trip to Germany that was scheduled the week after Thanskgiving. She said "No, we can work around that." And we did, That was my "good week" before chemo #3 the next Tuesday. So we had that trip. I am hoping that my 5 year celebration can be 2 weeks or more in Australia and Japan.
That would be my dream trip. Germany was a want to go trip for me and a "Hey I grew up part of the time here" for DH. (he was an Air Focre brat)
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Oh, beccad, I always forget about australia. I have never been and really want to go. Hmmm . . . .may have to contemplate that one, as well. And you have to go for a long time on that one - the flight alone is a couple of days! I am glad my post has some of you thinking about this. We all deserve some positive thoughts about the future for a change!
Like you, my onco was fine with working around my greece trip. She said we could delay chemo to allow for it. However, I had a problem with the idea that I was going to be out of work a lot for chemo (at least i thought so at the time) and I did not think it was fair to ask my boss, who already volunteered as much time off with pay as I needed during chemo, to also give me two weeks off in greece before I get started. Had I known that chemo was going to end up being so easy for me, I may have gone ahead with my trip. Oh well . . .May in greece will be beautiful!
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I still haven't made the oncologist appointment
Thanks for all the advice and reassurances though. Originally I was suppose to move to the 6 month schedule, which would have put me at April. But then I had a surprise visitor - in December, a year and a half after chemo ended, I got my first period. I called the doctor's office to see if it was normal, and the nurse called back and said the doctor said yes, but wanted to move the appointment to February - just to check everything out. And wouldn't you know it, that was the last I've seen of my visitor. So maybe I'll just slide the visit up until March...My five year trip - Italy, Florence and Rome in particular! And I've always wanted to see Iceland.
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