TRIPLE POSITIVE GROUP
Comments
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LeeA, yes the tumor board is associated with my hospital. I had a macromet 4.5 mm which was not seen on the MRI, and did not show up until the final pathology.
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LeeA - I think a micromet is less than a positive node - ie there are fewer cancer cells in the micromet node than in the positive node.
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IsThisForReal, thanks for that link - reading the thread now (in between posting on this one)
MsTori, looking at your diagnosis, am I correct in assuming that you started out with 1 out of 2 nodes positive and ended up with basically the same diagnosis after the Axillary Lymph Node Dissection? Meaning, still 1 positive and all the rest negative? It looks like you then had another month wait between your initial MX and ALND.
That's the month that scares me. I'm a lot older than you (I think) and my tumor was 2.5 cm versus yours (1 cm). I would hate to wait a month and then end up with basically the same diagnosis but yet another delay in chemo/herceptin.
Thanks so much for your input. You've been through it recently and your words of advice are much appreciated.
Linda, you have had lymphedema, right? (and editing to add - thanks for your explanation of how things were for you).
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IsThisForReal - first off, I love your screen name because it captures perfectly this entire cancer journey/experience/odyssey/trainwreck! The first few days after diagnosis I kept saying (over and over again) "I can't believe this is really happening" to my husband. And thanks for suggesting the second opinion.
vballmom - the fact that you had a 4.5 mm macromet and didn't have an axillary lymph node dissection after review from your tumor board is very good information to know and I thank you for sharing it. Obviously, your medical group is pretty progressive and that's encouraging.
This micromet did not show up on MRI and it was not evident in the OR during surgery (with the clicking dye test or whatever it is they do - the PS said the BS kept hearing a clicking sound and went digging for one more node - whatever that means). The first one he handed over for testing was the one that was positive.
Omaz - it looks like there are circulating tumor cells (?), micromets and macromets. It seems like many of the studies do involve women who have had lumpectomies versus mastectomies. I have way too many tabs open at this point and need to close some of them down before I overload my poor laptop's memory (and mine - lol).
You all are so helpful. I cannot imagine going through this pre-internet.
I'm sitting here stewing and eating prunes... I think there's a correlation!
p.s. Omaz, did you ever make anymore chocolate covered prunes? I just passed Thanksgiving 2011 in the Triple Positive archives.
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kayb - I just found this - I don't know if this has anything to do with it or not:
The radiation oncologist, however, has historically relied on ALND findings in the design of the radiation treatment fields7; http://jco.ascopubs.org/content/29/34/4479.full
But then again, we're back to ALND AND RADS AND CHEMO...
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LeeA - Thanks for reminding me!! I think I will make some chocolate prunes tomorrow! All the info is so confusing sometimes I swear! Between all of us we seem to be able to sort things out one way or the other!
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Omaz - last night's run to Target involved two purchases (at least this info wasn't as confusing!)
1. TANK TOP(s) - per your suggestion and TonLee's (and ashla's - although she suggested OldNavy and I figured I gave Old Navy enough of my business with button-up shirts - plus, I didn't want to push the envelope with a trip to Old Navy on a night when my husband's favorite show was on (Fringe)).
2. PRUNES (per the suggestion of many in the archives, including you)
I've been eating prunes today with favorable results.
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Chocolate covered prunes? Hmmmm - does it work?
LeeA - Yes, I do have LE!
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Linda, is it something you deal with on an everyday basis or does it come and go?
I'm reading through the archives and I've covered a lot of ground but I can't remember all the details of what people have gone through. I know lago has a sleeve but doesn't have to wear it all the time (or I think I'm remembering that correctly).
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I just wanted to chime in on the conversation about taking more nodes. I was going to have a mastectomy, until I was told about taking more axillary nodes if they found a positive sentinel node, but if I had a lumpectomy and the sentinel node was positive they wouldn't take axillary nodes, but would have radiation to the whole breast and axillary nodes. It just didn't make sense to me. My BS said it was because with a mastectomy you usually don't get radiation and with a lumpectomy you do. We went round and round. I just couldn't believe how illogical it all seemed. If lumpectomies didn't have to have so many nodes taken then it just makes sense that a mastecomy shouldn't warrant so many nodes taken. So ultimately I went with the lumpectomy to avoid the axillary nodes being taken. As it worked out I had no positive nodes so it became a moot point. They don't have to take so many nodes any more, but some surgeons are just stuck in a rut.
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Thanks for weighing in, GrandmaV -
Re: this "So ultimately I went with the lumpectomy to avoid the axillary nodes being taken."
At the time, I thought my tumor was too large for a lumpectomy. They took me back to the ultrasound room and measured it as 3.4 cm with a "tail" that was 2.5 cm.
After the MRI they said the tail/extender was really a blood product (hematoma) and that the tumor measured in at about 3.1cm.
My BS is known for doing intraoperative radiotherapy so the size thing was very important. 300mm or under would have qualified me for a lumpectomy with intraoperative radiotherapy.
Now, today, I find out the tumor was 2.5 cm (just 2mm larger than it was shown to be at my ultrasound way back in late July) and the way I understand it (I'm no mathematician, especially not in mm/cm) - that makes it 250 mm - which would have, presumably, qualified me for a lumpectomy with his intraoperative radiotherapy technique.
I'm feeling rather annoyed this evening the more I think about this. Maybe I should have just given them carte blanche to do whatever when they got in there but I thought the bilateral mastectomy seemed to be the safest route. But now, this...
Sigh.
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LeeA - My Le therapist would like me to wear a sleeve all the time, but I don't. I wear it for flying, house work, walking, driving, anything that can make swelling worse, or tire my arm. So, I don't wear my sleeve all the time, if I'm just sitting around the house, I'll try to elevate my arm most of the time. Right now I'm dealing with a bout of swelling triggered by a couple of punch biopsies on my MX area, my arm started swelling immediately after the punches - that was about a month ago. I try to do my self lymph massage several times a week, and have strated Lebed exercises. I also have a garment I wear at night about hlaf the time. There are a couple pretty active threads on LE - the are http://community.breastcancer.org/forum/64/topic/759378?page=187#idx_5590 and another one is mainly for women that haven't had reconstruction, but they touch on LE http://community.breastcancer.org/forum/82/topic/789067?page=51#idx_1503 And the next one is about exercises etc... for LE http://community.breastcancer.org/forum/64/topic/783789?page=72#idx_2159
I guess bottom line - it is something that effects me everyday, though I don't always have much swelling. I also have nerve and muscle damage in that quadrant from treatments that cause more issues.
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LindaK
I am trying to gain some knowledge about the herceptin treatment phase. I just finished 4 AC treatments, and will be moving on to taxol and herceptin. Have you been on the herceptin for a year? How are the side effects? Any heart problems ? Sorry you are having so much trouble with the LE. It must be difficult to manage. Did you have to have a mastectomy, or were you given the choice of a lumpectomy? I had a lumpectomy, but am contemplating a mastectomy.
appreciate any input, and good luck to you.
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Waiting for the next step - I had Herceptin for a year, and completed it in May of 2011, so have been off of it for about a year and half. I didn't have many side effects with it. My EF stayed good during my treatment (I'm in my 50's). I did get headaches for a few days after each treatment, but that was about it. I had a mastectomy, my tumor was large and showed a lot of lymph and vascular involvement, so my surgeon didn't give me a choice, as it was he still didn't the margins that he wanted, though they were clear. I only had three days before my surgery to decide whether or not to have the other breast taken, and couldn't make the decision to say yes at that point. Now, 2 1/2 years later, I've decided (I think) to have the other breast taken off. I'm pretty lopsided and have a lot of pain issues, so I want to do away with having to wear a prosthesis all the time. I am not going to have reconstruction. Feel free to ask me anything. Good luck with the Herceptin/Taxol. There is a younger lady on one of these forums that did have some heart issues from it, I think it may have been TonLee, but I'm not sure.
Linda
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Lee - Please don't second guess your decisions. Your double mastectomies do reduce your chance of recurrence so it's a very good decision and really what I wanted to do. I just wanted you to know that radiation to the axillary nodes is just as safe as removal of the axillary nodes. You could still get lymphedema by radiating them, but it's a much less chance. Talking with an RO before you make your decision might help. If they recommend radiation even if you have more nodes removed, then there would obviously be no reason to have more nodes removed. For me, I was more scared of lymphedema than I was of radiation. You'll make the right decision for you.
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LeeA - I had my first appointment with the MO during the time I was deciding whether to do a lumpectomy or bmx. My BS is a very good surgeon, I think, but didn't help me in making that decision at all. After I talked to the MO, things became much clearer and I was able to go ahead with my initial gut feeling that I should have bmx. Anyway, I hope you feel better about things after meeting your MO and RO. Second opinion definitely sounds like the thing to do as far as the lymph node issue. One point, I am different from almost everyone here in that my cancer was ILC instead of IDC, and the nature of ILC was a big part of my decision. Thankfully my sentinel nodes were 0/3. Best of luck in figuring all this out. Hope your recovery from surgery continues to go smoothly!
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Oh wow this thread is always hopping and I'm trying to decipher like codes here LOL.
I have LE and I actually don't wear things all the time--it's a pain in the neck--I know jow to easily enough but it's still a pain. Wow all the decisions u have to make, it's horrible---But remember whatever decision u make it'll be the right one--u all have done so much research that's wonderful.
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LeeA it's a nightmare. I get BP on my leg/ankle but most don't know how to do it so it reads so high that it seems like I should be having a stroke. When I was getting my port out on the 7th that happened so I did let her take BP with the manual on my right… and of course it was completely normal. Also now that my port is gone most places won't do blood draws in my foot. It has been suggested that I can get it in my hand again on the right but not let them use a tourniquet. I even as my LE MD, president of LANA and even he just shrugged and about getting folks to do blood draws from my foot.
Also I agree with TonLee's post. And many women who get MX get rads. I know I was in a gray area but typically rads is recommended for tumors over 5cm. That 3rd node might have been clumped together with the others and there was no way they could avoid removing it.
A good surgeon is not eager to cut. I know initially I wanted to do the BMX. My BS said he wasn't in favor of removing healthy tissue but would support what ever I wanted to do. He wanted to wait till my BRCA test and MRI. Of course after the MRI results he recommended the BMX.
Lumpectomy qualifications are many. Small breast vs large breast is also a consideration not just the tumor size but the size of that tumor in relationship to the breast. To be honest I didn't have a choice but I wanted them both off anyway. Greatly reduces my chances of getting a new breast cancer. Also the dense breasts were an issue. IMO it took way to long for them to find a 6.5cm tumor in a former 34 barely B breast.
I wear my sleeve every day. Put it on 1st thing and take it off at 5 or 6pm. I have no issues. I asked my LE MD if I could stop wearing it and he didn't recommend it. He said I could start to swell. I'm so used to it now it's really not a big deal anymore
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Linda, thanks so much for the links and for the rundown on how lymphedema has been for you. I've bookmarked this page of the thread for future reference.
I guess that must be pretty big decision to make at this point (meaning, having the second mastectomy) but now that you've lived with it this way you at least know what the alternative is and you've had a lot of time to think about it. I wondered what the lopsided part of it would be like as well because I've always had right-sided shoulder pain since the days when I carried my son around on my right hip.
GrandmaV, you're right . . . I need to not second guess myself at this point - if for no other reason than they're gone now. I didn't ever want to save them for how they looked - just thinking about the lymphedema part and wondering if I was calm enough at that point to understand everything but yet again, the surgeon told me point blank that it was too large to save the breast so it might be a case that the dimensions of it wouldn't have worked correctly for a lumpectomy. The report reads 2.5 but the actual dimensions of it may have not added up to be a tidy little ball of badness that could have been scooped out, Baskin Robbins style.
A little while ago I read your post (and my response) to my husband and he said "you never would have decided on a lumpectomy even if you'd had the choice" and he's probably right because I'm far too knee-jerky. I've had a scorched earth policy on this thing since the day I found out it was malignant.
Powermom, I think you're right - I'll feel much better when I've run this past someone else. I'm really fortunate to have an appointment with an oncologist who has a great reputation and once again, part of finding him was connected with this website.
With ILC it's not as compact as IDC, right? More spread out and sheetlike?
How are you feeling now - almost one month post-op? I'm assuming you're now drain-free?
Camillegal, when I first saw your name here I thought it was Cam Illegal versus Camille Gal! I've never mentioned it 'til now but I think of it every time I type your screen name!
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LeeA - my surgeon said there are no should have's there's only doing what you think needs done going forward, so don't look backwards. Remember in order to get good clean margins they want to not only take out the tumor, but a pretty big area around it.
I was always reading Cami's name as Cam Illegal too, thanks for clarifying that Lee
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Hey, maybe it is Cam Illegal!
And you're right about the margins...
I didn't think about that.
Thanks for bringing that into perspective, Linda.
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soltantio -
Hi there. Re: my tumor - maybe I didn't explain it correctly - here it is again, slightly edited.
"At the time (early October) I/they thought my tumor was too large for a lumpectomy. During my first appointment with Dr. H they took me back to the ultrasound room and measured it as 3.4 cm with a "tail/extender piece" that was 2.5 cm.
After the MRI they said the tail/extender piece was actually just a blood product (i.e. a hematoma - probably leftover from the biopsy on October 4) and that the tumor measured in as a typical tumor of about 3.1cm (with no add ons/tails, etc.)"
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The gist of all this is -
*A tumor which measured at 2.3cm at ultrasound (July 26)
*Then was estimated to be 3.4 or so at ultrasound (October 11)
*Was estimated to be 3.1 cm at MRI (October 12)
*Was finally measured to be 2.5 cm at the time of the pathology report (November 16)
The tail was a blood product/hematoma that doesn't count toward the size (I don't even know if it was still present during the mastectomy surgery) and apparently was not cancerous.
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Regarding your own tumor - I was told that the tumor can appear larger following the biopsy because of bleeding. My biopsy was an ultrasound guided suction biopsy. As an aside, it was such a quick procedure and I was shocked to see the cost of it on our insurance website not long ago. In excess of $7,000! Good grief!
So, perhaps your tumor kind of fluctuated in size based on how it was being measured - i.e. pre-biopsy, post-biopsy, by MRI, by ultrasound, etc.
I recall reading a thread here at BCO about a tumor that was described as being barbell shaped.
I've seen many images of my own tumor. I got the disk from the local hospital where the ultrasound/mammogram was done and I have all of it on my computer and drove myself bat**** crazy looking at it for 8 weeks. I created comparisons between years of mammograms, figured out how the mammogram and the ultrasound lined up, took screenshots of my tumor compared to other tumors online - well, I was just one busy little bee. I have some images that show heat/density and one little area of my breast looked like the LaCoste alligator. THIS IS WHY CRAZY LAYPEOPLE SHOULD PROBABLY NEVER HAVE ACCESS TO IMAGES OF THEIR BODILY ANOMALIES!
I can understand your hesitancy about having a BMX. For me, the hesitancy was in NOT having a BMX but that's just how I'm wired. Dr. H at first outlined a scenario with a lumpectomy and a refashioned right breast but I kept thinking about all those ducts and lobules and coopers ligaments and felt like there were too many potential land mines for my comfort. On the other hand, here I am tonight coming to grips with the idea that this supposed "best" way to get rid of the cancer may not have been the best choice in terms of lymphedema.
Sorry you have a cross-town trek for the radiation. I think by now you know how testy I am about traffic/gridlock so I definitely feel for you dealing with that in the weeks to come. Where the hell are these damn Jetson flying machines I thought we were going to have by now??? I guess we'd just have air gridlock. There is no winning with traffic out here - unless you want to get out and do everything about 2:00 a.m.
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LeeA, I was gonna tell you to get some sleep. Um, then I realized it probably is only midnite by you, and I'm the one who should br sleeping, seeing as its already after 3:00 am here! LOL goodnite. LOL
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Pbrain I was hospitalized twice with low white counts while on AC even with neulasta. I had no problems while doing my 12 weekly Taxol and Herceptin. I had neuropathy in my feet even before starting Taxol. It was the last week of AC that I noticed my toes felt really funny when I curled them in. Sort of like there was something between my toes and the ball of my foot. They are very slowly getting feeling back. It has been almost 4 months post chemo. As long as I'm seeing progress I'm not going to worry about it.
Peggy .......who has cleaned out our bedroom (which is the 'sealed safe room' in our apartment) to accomodate the rest of the family if sirens start going off regularly....
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LindaK
Happy to have found this group of Her2+. Your experiences will be so helpful to me. I had a lumpectomy, was my 2nd opinion, and I was grateful he at least gave an opinion. My first BS pretty much was asking me what I wanted to do. Having no prior knowledge, how could I make that decision? It don't make sense to me. So I went into the big city and got a doctor who wasnt afraid to give an opinion. I've had many second thoughts, but now finally am coming to a peace with the decision. I feel so bad for all of us, there is so much of a feeling of being on your own through this. I get a one week reprieve before beginning taxol. Hope all of you stay well, minimal SE's.
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Peggy, I will keep you and your family in my thoughts and prayers.
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Lee I hope u got some rest--insomnia keeps me up, but u really need rest now.
And I am laughing about my name---It's Camille Gal, if it were Cam llegal it sounds like I'm an attorney or have knowlege of the lauw. hahaha I can barely keep up with the conversations on this post.
but I'm glad I didn't really have choices cuz they found 2 tumors in my one breast both big and one the opposite sides so to them it was an automatic one breast gone, The ins. did not OK the other breast, then 1.5 yrs out my other one had to go now the ins. had to OK it. And my Drs. weren't happy with my ins. decision beacuse they all figured the other one was going to be a problem. And it was. And I had so many nodes involved that And when my Onc talked about rads--I just said OK cuz of nodes and she hugged me and said u've made all the right decisions. I said I don't remember making any actually except for rads. But of course I took credit for my so called intelligence. And I told u she called me a couple of weeks ago, cuz I've moved and changed Drs. and she just talked to me, but when she said he always thought I was such an intelligent woman--I said do u know who u called? And I know this is silky why I never questioned their decisions but it's easy in my head--both my surgeon and my onc.saved my Dad's life literally and my onc gave us our mom more time and my mom decided to stop all treatment--she had enough--so in my twisted way of thinking my parents ave me their drs. to help me--Silly I know
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LeeA the technology we have now is not 100%. They thought my tumor was 7cm on US/mammo. 6.5 on MRI. My radiologist told me that this can fluctuation at least 1cm in either direction because the imaging tools are not perfect. I know my neighbor had only one small tumor show up but once our BS got in there he saw she had more tumors hiding and needed the MX. Don't be upset with your BS. He did the best he could with the tools and knowledge he had. This is one of the reasons why many get a 2nd opinion but there's a good chance your 2nd opinion would have said the same thing.
It's not a perfect science. We forget that sometimes.
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Camille Gal
I sleep about 3-4 hours at a time (at night) since having the surgery. All in all I've been getting 6-8 hours of sleep a night which isn't too bad compared to what I used to get per night.
It sounds like cancer runs rampant in your family as well. I'm glad you've had doctors you could trust throughout your family's treatment as well as yours.
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lago, I'm not upset with my doctor as much as I am aggravated with myself for not pushing to understand the lymphedema/lumpectomy process versus the lymphedema/mastectomy process.
It's as if I just skipped over something entirely and I like to think of myself as being a bit more thorough than that.
I just scrolled up and realized I missed your post from last night (the one right below camillegal's).
I think wearing a sleeve all day would drive me nuts but then again, I want to live...
Is your lymphedema on the same side where the cancer was located? Actually, you had IDC (large) on one side and some ILC on the other breast (IIRC) - but all negative nodes (in the end), right?
I'm not second-guessing my surgeon. I researched him thoroughly before making my choice and given that, never even considered a second opinion beforehand.
I'm just wondering if I should have left it wider open, i.e. "if you get in there and it's not as large as you thought - do a lumpectomy so as to avoid having to do an ALND." I didn't realize there was such a cut and dried (NPI - no pun intended) "lumpectomy/radiation/possible no ALND" versus "mastectomy/no radiation/definite ALND" (if that makes sense).
At this point it is what it is and I'll just have to deal with it.
I've been reading about this:
Mastoscopic axillary lymph node dissection
And wondering if it's a possibility.
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