TRIPLE POSITIVE GROUP
Comments
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LeeA, Yes ILC tends to be more "flat" or sheet-like, as I understand it. It is often difficult to detect. I feel extremely fortunate that mine was caught (due to suspicious microcalcifications) before it got any bigger.
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LeeA - I have to amend my previous post to say IF you had any more micromets anywhere chemo would get rid of them.
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lago - Yes, that looks to be it. Thanks! When I clicked on the link I got a "page not found."
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Omaz - Yes, I guess it would be "if," considering the 1mm micromet was removed during the SNLD and the other sentinel node was clear/benign. One axillary node was removed and it was clear/benign.
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powermom - I was just looking at your diagnosis and treatment. Will you have radiation following chemo?
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TonLee - I hope you're having a good time!
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Powermom - you know you and I are very special - only .1% of bc patients are triple positive lobular. We are very lucky it was found early - extremely lucky it showed up on a mammo. Mine was 6mm x 7mm x 11mm - so they take the longest measurement.
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Wow... "only .1% of bc patients are triple positive lobular"
It's amazing, all the subtypes of breast cancer. I used to just think "oh, so and so has breast cancer" - not realizing there was more than one kind.
You two really are unique...
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soltantio - would you board the dogs during the week and then take them to your regular home on weekends?
Have you thought about checking Craigslist - although that could be asking for trouble...
It's a shame we have to juggle everything around traffic out here. Nothing is really that far away but it is when you have to fight traffic.
I used to take my son from our house in Hermosa Beach to Westwood 2 or 3 times a week to the Drake Institute (this was way back when). Ugh. It wasn't all that many miles away but we would get into the worst traffic jams.
One time my mom was out here and she's a chain smoker. We had driven up to Camarillo to the outlet mall and then came back through Malibu. We had to pick up my husband at his office downtown.
I don't know what was going on that day but from Brentwood (around Sunset) to downtown ended up being a 2.5 hour trip. She still talks about that traffic jam from time to time (post traumatic cig disorder I think...)
You asked me about the images from my mammos and ultrasounds. They came on a disk and my husband was able to extricate all the images onto a new disk that would work on my computer. The original disk didn't work on my system (I have a MacBook) but I ended up with all the images from three years of mammograms. I finally figured out how to compare an ultrasound with a mammogram. I read some ultrasound sites and one explained that the CC view is the one that is easiest to match up with the ultrasound view. Sure enough - I was able to line them up and just to check myself, I took the image I took of both into Dr. H and I had them lined up correctly. Of course, none of this matters in the grand scheme of things! I still have cancer versus what I was hoping for: fat necrosis from a car accident back in 1999 (air bag deployed).
p.s. No, I didn't know that Drs. Vogle and Slamon worked together on the Her2 stuff.
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Omaz - re: chemo and micromets - I found a link to this article on an old thread here at BCO.org.
Among patients with micrometastases and isolated tumor cells, adjuvant chemotherapy eliminated the recurrence hazard, making disease-free survival the same as in patients with clear nodes.
Micrometastases or isolated tumor cells were associated with a 9% absolute reduction in disease-free survival compared with negative nodes, Maaike de Boer, M.D., of University Medical Center in Maastricht, reported at the San Antonio Breast Cancer Symposium here.
"In the group of patients not receiving systemic therapy, isolated tumor cells and micrometastases both were prognostic factors for disease-free survival," said Dr. de Boer. "More remarkable, the prognostic impact of isolated tumor cells was as large as that of micrometastases. Our data show that patients with isolated tumor cells and micrometastases benefit from adjuvant systemic therapy."
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Lee - yes we are rare - there are very few ladies on BCO who are like us
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LeeA - No radiation since my sentinel nodes were clear.
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SuzieQ- Yes, it is hard to find many of us. I didn't realize the percentage was 0.1%. I looked and looked on here for other triple positives with ILC, but not much to see. What was your treatment for your ILC? My tumor was 1.8 cm. Interested to know if have any comments on my path of treatment. BMX, TE on October 18; surgery to remove necrotic tissue Nov. 8, TCH scheduled to start on Nov 26. And, yes, a miracle that ours was caught early.
LeeA- I'm not one to count on percentages. BS said there was an 80% chance my microcalcifications were benign. I fell in the 20%, now .1%! My only child has Down syndrome -- but absolutely nothing but gratefulness for her. And, get this, I was involved in an accident while test-driving a used car! LOL
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LeeA - That's a good article. Makes sense. Chemo is given to destroy any possible leftover undetected cancer cells in the periphery which would include lymph nodes I would think. About the rads to the axilla - My rad onc said that having an mx would not guarantee that I wouldn't have rads - she said that if they found anything in the lymph nodes I would have rads to the axilla. My surgeon and the pathologist were looking at the lymph nodes real time during surgery to get a rough idea of what was going on there and he did say that he would take more nodes if the sentinel nodes were positive. I don't remember if he distinguished between micromets and macromets though.
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Typically tumors over 5cm get rads even if you get an MX. I'm not typical and got a pass. I think the risk (heart, lungs etc) outweighed the benefit in my case due to the location of my tumor. So MX doesn't mean you won't get rads even if your nodes are clear.
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lago - They didn't tell me that since my tumor was smaller. Probably figured if they gave me anymore information than absolutely necessary at that point my head would explode!
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They forget to discuss stuff. I remember at my pre-op my BS said "now I went over how I'm doing the surgery." He didn't because I only saw him once right after my Mammo/US but before biopsy. Granted I already researched so I knew what he was going to do
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soltantio - I had to have my rads about 100 miles from home, so we find a house associated with care system, supported by the Children's Miracle Network and the Lions. There was no charge to stay there, just whatever you could donate, we could leave our stuff over the weekend when we came home. Stayed there 6 weeks with my teenage daughter/driver. It had a kitchen, so we could cook our own meals. Worked great. You might check with your cancer center and see if there is something that they can suggest closer, and less expensive.
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LeeA - 12 years ago when they made the suggestion for Tamoxifen, it was not a strong suggestion, just that it "might" be helpful. None of the docs back then could give me a compelling reason that it would make a difference with my diagnoses and pathology. I did have a SNB and BMX, but you have to remember that back then even SNB's were not standard like they are today.
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Bren58 I know of many women even today with non invasive breast cancers that decide they don't want to take Tamoxifen. The SE are the main reason.
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Powermom - I had TCH x 6 followed by rads. I'm on armoasin.
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I take aromasin (exemestane) and actually have to take pain meds to deal with the pain SE's, I also can't work anymore and am on SSDI, and (hopefully still) LTD. People ask why I take it when it causes such severe side effects for me (I'm one of that small percentage), but being diagnosed at Stage IIIA, it makes a big difference in my risk of recurrence. So even though the the SE's are continuously challenging for me, I'd rather be around to enjoy my "present". I look at it like I've entered a new phase now, I want to be here for my family for a while. Now that being said, I've met a lot of women who are not willing to deal with the side effects and discontinued taking the AI's or Tamox, a couple have even started taking HRT again to alleviate the SE's from their treatment. Everyone has to make their own choices on what they are willing to live with and what they aren't. I believe the important thing is to have enough information on the pro's, con's, SE's, ways to reduce the SE's, risks, and benefits to make a decision that is right for you, your lifestyle, family, ....... Just my 2 cents - have a great day. We're having a big storm here on the Oregon coast today, I can smell the ocean.
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crlamb - sorry for the delay, I don't get on here much on the weekends anymore. I go to Dr. Trehan! I also work in the physician building attached to Aultman. Maybe we'll meet for coffee or something at the 7th Street Cafe!
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LeeA - Just wanted to share my persepctive on ALND. I self-elected BMX, BS was planning a lumpectomy which would have been followed by rads. My BS is a progressive guy - he performed a skin/nip sparing BMX on me and was one of the pioneers of sentinel node mapping, he is not a reactionary old-school surgeon who always does ALND with a positive SNB. He also has a decreased risk ALND technique and does actually have a very low rate of lymphedema among his patients. He maintains an extensive database of all his patients going back 25 years and tracks all information. All he does is breast surgery and was a long-time surgeon at the only NCI desiganted cancer in Florida. I had mammo/US/MRI defore surgery and none of the imaging showed a problem in the axilla. I had a SNB on each side during the BMX and the pathologist declared the single node on the cancer side and the two nodes from the non-cancer side to be clear in the operating room. Post-op pathology showed <20 cells in the single cancer-side node, which would be called isolated tumor cells, although both my BS and MO referred to it as a micromet. Both were adament that I have ALND, which was done 5 weeks after the BMX, and did delay chemo - but I was further delayed by skin-healing issues. I talked extensively with my BS about the LE risk, but he was not movable on this subject. He took 11 more nodes out and among them was a 6mm positive node. I do now have mild LE as a result of a body-wide swelling caused by chemo, but if I had a hindsight choice I would not change anything I did. I do not trust that rads and chemo would have eliminated a 6mm node for sure, but I know that surgical removal did eliminate it. There is a recent thread begun by someone who was Her2+ had neoadjuvent chemo/Herceptin, rads, and was on hormonal therapy and has a new dx of BC in the axilla because there was residual cancer that grew again after all that treatment. As with many other decisions concerning BC deciding on ALND is all about your personal risk tolerance - will you be the exception to the rule as I was with ITC in the sentinel and a much larger positive node further up, are you more inclined to back your decisions with study results, do you always follow your physician's recommendations, do you do your own research and reach a compromise with your docs, are you more afraid of cancer or lymphedema - this is a very personal decision and there is no one right path to follow.
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SK i also read and responded to the post about the her2 gal with a reccurance (or left behind node) in her axilla. I believe she had 6 lymph nodes removed. I would assume those were sentinals plus maybe some level ones. I don't think any surgeon would have removed more than that if they all came back negative (which they did). She had neo adjuvant which probably complicates matters. There are always those 1 in whatever cases
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Rozem there are plenty of HER2+ that recur yet have no nodes. Granted having no nodes is better statistically but this is one of the strange things about HER2+. There are other ways it can travel but the just don't know for sure what that way is. Or maybe something does sneak through the nodes but so microscopic that it can't be seen in the nodes.
I know that my risk of getting breast cancer in the first place at my age with my history/risk factors was less than 2%. Shit just happens.
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Welcome back SpecialK! Well said. I hadn't thought of it this way. And of course, I had now at of knowing beforehand, that it would be negative. I still need to send you a pic of the wig on. I just got all my buffs in the mail today too! Yay.
Sol- I am ignoring Friday for now. Lol!0 -
lago the girl who had the reccurance had a local reccurance - in the nodes. After neo adjuvant she had 6 nodes removed all clear (i think 6 it may have been more but i do recall it was more than a snb) , pathology in the breast was all clear aswell...2yrs later she has a local reccurance in her axilla (and she had rads). I don't think this girl could have done anything else to prevent a local reccurance - she did it all which tells us this disease is truly unpredictable.
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Rozem I've always said that--it's not only unpredictable it goes where it wants. After my sister was waiting for chemo after her bmx healin the Dr. felt a lump on her head--they went it and it was cancer Of course it was now bone mets--so it does what it wants when it wants and no matter what u do it's still might come back and no one wants that but the beast doesn't really care what u want, it's cruel. That's why u shouldn't look back at whatever u decided to do cuz at the time it seemed like the right thing.
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Rozem there is one oncologist at Sloan Kettering that has this theory that cancer that gets "loose" will come back to settle in the same area. If that area is gone (think MX) then it might settle someplace new. Just a theory. It could be possible in some cases.
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rozem - the person we referred to did have one positive node dx'ed prior to neoadjuvent chemo and rads - I think the nodes were clear upon removal afterward, that is why her situation was called residual and not recurrent.
I posted above only to illustrate that we are unique and to keep in mind that there are always exceptions to the rule. We make treatment decisions based on whatever criteria carry the most weight with us as individuals. For every treatment decision there are advantages and risks, pluses and minuses - we do the best we can with the info at hand but there are no absolutes or guarantees.
mstori - thanks for the welcome back! I have recieved my last set of injections for the vaccine trial - my last trip will be the first week of Dec. for the skin tests, then I have a 6 month reprieve. You will love the buffs - I liked them because they are seamless.
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cami im so sorry to hear about your sister....this disease cruel and yes, it does what it wants.
lago yikes, that is scary - i often thought about that when they did my core biopsy, the nurse was jamming that needle into the tumor like it was pincushion . All i kept screaming in my head was "please stop disturbing the giant" and i kept picturing all these cells scattering like dandelions
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SpecialK -
Thank you so much for your post.
I was looking through the archives this morning and saw one of your posts on another thread (I might still have that tab open) re: your 6mm lymph node and told my husband about it before we left for the oncologist appointment. In fact, I took a screen shot of the post. You posted it on November 7, 2012. You called it a tricky devil (cancer) in that November 7 post and reading the other posts here today - it (cancer) surely is...
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We just got home about an hour ago from the very first oncologist appointment.
For as down in the dumps as I've been since Saturday morning - well, let's just say that today is a completely different day and I am so thrilled with my oncologist that I actually had tears in my eyes most of the way home! Seriously!
I don't think I've cried all that much during this - although I did cry yesterday when I heard the vacuum running and felt so damn guilty/bad/helpless that my husband is doing so much right now - but other than that, I've cried less than I expected (or something).
I am truly blessed to have gotten into this oncologist. Someone else from BCO.org started seeing him in 2006 and he had a closed practice back then. It is only by the kindness of another breast surgeon - who I have yet to meet - that I have been able to get in with this doctor and if a person who just had a BMX could do backflips - well, I would have done them all the way home from Burbank.
Also, the same person from BCO.org was at the center today for another type of treatment and she was there in the oncologist's waiting room when we got there (we had planned to meet) - so, I've officially met a BCO person and it was so great to connect with someone who I've gotten to know online via PMs - plus, we had talked on the phone Saturday night. I'm such a hermit that this in and of itself is a big thing for me, i.e. meeting someone that isn't a doctor. She and I have been texting since I left his office and for the first time in a long time - I feel, dare I say, optimistic.
My words to my husband (as we were pulling away) were (jokingly) "I feel like I've come home to daddy!"
After we sat and talked to him in his office he did a thorough exam - unlike any other exam I've ever had in my life - and then we went back to his office to talk about treatments. He did a great job of breaking it all down - described cancer cells as having lines of communication just like the lines of communication in our houses, etc.
Right now, he thinks it will be the TCH followed by an AI and no port (I didn't ask - he brought it up). He wants me to do some squeezing exercises in the next few weeks.
I went through my list and the first question was, of course, about the node.
I said "I've been told I might need more surgery."
I wish I could have taken a picture of his face at that moment.
He closed his eyes for a moment and said - you had a tumor that was roughly the size of a quarter. You have a 1mm micromet. For all intents and purposes, a 1mm micromet means node negative.
I said "that's what I basically read last night - by Dr. Vogel."
He went on to say that I should ask the other breast surgeon (the one who got me in to see him) but my husband and I both got the impression that he does not think more surgery is necessary.
He wants to retest all the slides or whatever to do the FISH(?) test. My biopsy showed Her2+++ but he said something about HER2++ (kind of confusing, that part). He wants to retest my hormones, etc. but basically, I'll start chemo at some point after Thanksgiving - I assume when all these additional tests come back.
Sorry for the long post but I thought I would fill you all in on what feels (at least to me) like good news. I guess good news in that I feel like I took my cancer into him today and he more or less took over. Thank goodness.
When he was out of his office I took a quickie picture of a plaque on his wall. It reads:
Never lose heart...
Never lose hope...
Never lose faith...
Never ever give up
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