TRIPLE POSITIVE GROUP
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I'm going to Georgetown University Hospital. I get the impression that there are never too many tests they can perform and never the wrong question to ask. I just don't know what those questions are. I have a vague idea the Her + is really bad, but no idea how bad. I'm not worried about the SEs. I was a teensy bit nauseous before bed and took the compazine and felt great. I felt good enough this morning to come to work. Going to take the Claritin this evening to hopefully prevent any pain from the Neulasta shot that I'm getting in the morning. I'm more concerned with what will happen down the road. Do I have a shorter life span ahead of me because I'm triple pos and stage III or am I going to be perfectly fine. I realized that these are questions best put forth to my doc, but I have a tendency to not want the answer if it was bad news.
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yaya - Possibly more important what the med onc and rad onc say.0
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omaz, i think you're right, but it sort of hurt my feelings. it was almost as if he were invalidating my feelings, kwim?0
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Shinypop--I took the news about her2+ as: it's bad because it's like gas on the fire, making it spread faster, but it's good because they understand a lot about what makes her2+ bad and herceptin addresses it specifically.
I don't really believe that there's a better or worse diagnosis to have, but I think I'd rather be triple positive over triple negative. The chemo wacks the fast growing cells, the herceptin wacks the bits that are her2+, and Tamoxifen or the AI's starve anything that is ER+. I'd rather have drugs that target MY cancer rather than have just chemo that kills anything in it's path in the hopes of getting the bad stuff.
As for questions for the onc, I don't imagine that they can do more than cite the relevant stats if you ask if you will have a shorter life span or will be fine. Someone on one of the topics I follow said that the stats don't mean that much because there's always someone who has a recurrence and someone who does not whether the stats stats say that there's only a 10% chance or 90% chance. No one can tell you for sure which side you will land on.
I needed to hear from the onc that chemo was my best bet. I was pretty sure that I couldn't afford not to do it, but a lot of oncs will offer it even though it may have only a small impact. My neighbour was offered chemo but felt that it only improved her outlook by a small percentage over radiation alone so she turned it down. They won't force chemo on you so you need to feel that YOU are making the right decision.
The thing to remember is that BC is not an automatic death sentence. The treatments have improved so much, improving outlooks over what they were years ago. And they're continuing to improve thanks to research, finding new biomarkers that lead to more targeted treatments. I know that I will always have a chance of a recurrence in the future, but I hope that IF I have a recurrence, the treatments will have improved that much more by then.0 -
pasmithx2: Thank you so much for responding. I went for the double mastectomy before I knew I was Her2 pos and I'm really glad I did. Now I just have to make sure those little cancer cells don't sneak their way into my lungs that I've damaged with smoking for 28 years.
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shinypop, have you quit smoking? i quit a little over a month ago after smoking for 30 years. it was a no-brainer for me with the BC dx. i don't know why it was so easy because in the past, i have NOT wanted to quit. i've always said i'd rather die of cancer than alzheimier's. well, that isn't true now. do you have lung problems now? i think your bmx decision was an excellent one. if i'd know then what i know now (thanks to this forum), i think i would have done it, too.0
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I quit more than 2 months ago after my PS told me he wouldn't do the surgery if I didn't quit. Good incentive. ha!
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Shinypop-I drank tons and I mean tons of water (close to 100 ounces) 2 days before and then for 2 days following my infusions. Also, I exercised daily. If I could get through the first 10 minutes, the endorphins would kick in and I could almost always do a 1/2 hour workout. The exercise for me was huge both physically and mentally. For me, the chemo wasn't nearly as bad as I had antipicated it. GL
V
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Hi All...
Hope everyone is in good spirit OVERALL...
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Lago so happy to hear your exchange went well!! I have had my implants for over 3 months now, and they feel like my own. (well maybe not quite the same
but perkier for sure. 0 -
YAYA 25 Hello there, I know how hard it is to wait for the test results (worst part I think!!) I had to wait almost 9 weeks from my mx before I started chemo in May. My path report was neg for her2 at initial biopsy and the Oncodx came back equivicable for Her2, so my Mo had it checked a third times in the lab and it was positive. So chemo and Herceptin it is!!! I hope you get your results soon so that you can move forward!! Oh and this is such a fantasitc site!! all the ladies here have such a great wealth of knowledge and are so helpful. I am so glad I found them.0
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bucky, thank you so much for your welcome. i've already realized how wonderful this forum is!!
i have yet another question or two. i received my two path reports today. can someone please tell me how her2+ is 'graded?' some of you have written HER2+++ ... do the three pluses mean anything after the HER2? one path report says that it's her2+ amplified with a 6.6 after that. the other has the number 18 after the HER2+. one path reports states "chromosome 17, 1.3," and Ki-67 (26%), but it's 31% on the other. also, the path report from my biopsy is a grade 3, but from the surgery it's grade 2. my onc, however, made a big deal over it being grade 3. geez! i'm so confused. can anyone please help me?
thanks to you all.
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yaya - I would ask your med onc these questions too, thats what they are there for and they should take the time to explain until you are comfortable. There is another way to measure HER2 called IHC and that isn't as quantitative as the FISH measurement technique that you had. The IHC (immuno histo chemistry) just reports the number of +'s as an indicator of strenth. The FISH is actually quantitative and so gives a number. You had a 6.6 and an 18 for both your FISH tests it sounds like. Both results are strongly positive (meaning not debatable). I think the cutoff is around 2.6 or so for positivity (I can't remember the exact number) and anything higher is considered positive. The grade is determined from the summation of scores from 3 areas that evaluate how your tumor cells looked to the pathologist. It is more subjective. Each area can produce a score of 1, 2, or 3 with 1 being more normal and 3 being least normal/more cancerous looking. They then add the scores from the three area to get grade 1,2 or 3. All these things can vary slightly depending on the pathologist and also on the section of tumor evaluated. Usually HER2+ tumors are grade 3. I amd not sure what the chromosom 17, 1.3 means. The Ki-67 is a measure of proliferation and describes roughly what proportion of tumor cells were dividing. Again 26% is not very different from 31%. It's an estimate based on a sample of the tumor.
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bucky my new boobie prizes are not perkier. I had very dense perky ones before. The new ones are much squishier and bigger. They sit a little lower too but I guess when you go bigger they either have to sit lower or endup in your neck.
It really is a change. I have to get used to it. My DH seems happy though.YaYa My understanding is chromosom 17 is what they count for HER2. If it's over expressed as mentioned on the FISH, IHC or that new test that's out then you are HER2+. Everyone has this chromosom 17. That's what tells cells to grow. It's just when it's over expressed do you have this very high poliferation rate.
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Hi girls. Hope everyone is well. I am feeling good but have spent most of the day worrying...my brain just won't shut off. I am worried about mets. My nodes (0/5) were negative and my onc. gave me the impression that this meant only local cancer and I didn't need to worry about any mets. But, I've noticed a few Her2+ people with negative nodes who do have mets to lungs/liver/etc. I haven't had any tests other than a chest x-ray that would show mets. I didn't think I needed them. I haven't had a PET, MRI or a CT ? I haven't had any blood tests for tumor markers. What tests has everybody else had?I hope I am just being paranoid but I am wondering why if I need chemo to ensure no mets...why no testing to make sure there aren't mets already? I don't have a baseline for comparison down the road. If I did have undiagnosed mets....how will they know the chemo is working and shrinking the tumors? If I did have undiagnosed mets....would my chemo regimen and medications be dfferent than what I am getting? I would call my onc. but they aren't back in the office until Tuesday? Why am I doing this to myself???0
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Hi girls. Hope everyone is well. I am feeling good but have spent most of the day worrying...my brain just won't shut off. I am worried about mets. My nodes (0/5) were negative and my onc. gave me the impression that this meant only local cancer and I didn't need to worry about any mets. But, I've noticed a few Her2+ people with negative nodes who do have mets to lungs/liver/etc. I haven't had any tests other than a chest x-ray that would show mets. I didn't think I needed them. I haven't had a PET, MRI or a CT ? I haven't had any blood tests for tumor markers. What tests has everybody else had? I hope I am just being paranoid but I am wondering why if I need chemo to ensure no mets...why no testing to make sure there aren't mets already? I don't have a baseline for comparison down the road. If I did have undiagnosed mets....how will they know the chemo is working and shrinking the tumors? If I did have undiagnosed mets....would my chemo regimen and medications be dfferent than what I am getting? I would call my onc. but they aren't back in the office until Tuesday? Why am I doing this to myself???
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christean, i know exactly how you feel ... not being able to call and ask questions before tuesday. ugh. it sounds like weeks away, but tuesday WILL come. i don't really know the answer to your question but i will tell you that i'm having a PET scan next week and a heart echocardiogram. i also had an MRI before surgery. some of the women here who are more experienced with treatment can help you more than i can! i know these are wasted words b/c i hear them too and they don't always help, but try not to worry. wait for responses here and call your onc first thing tuesday morning. i'll be thinking about you.0
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Christean I'm not sure why you aren't having an MRI. I know I got one to see what was going on in the other breast and that's why we ended up removing that one too. (LCIS typically can't be seen on mammo/US). I also got the feeling my BS wanted a better image of what was going on in there before surgery but I don't know that for sure. I did have very dense breast tissue so the mammo/US might have not shown everything.
The scans (CT/PET) are essentially useless if you have micro mets. The tumors need to be a certain size before they pick them up. Usually they wait till you have symptoms before they do scans for this reason. Waiting till then does not affect your survival. If one was to have mets, once they find out the treatment is going to work or not work.
I will admit my BS ordered scans before surgery. I think they do scans for stage III. My BS pretty much thought I would be a stage IIIA before surgery. He really did think I would have micromets in my nodes with a tumor my size. I don't know if I would have had scans if my tumor wasn't so big.
Finally if they did scans and did find mets they would be treating you with chemo first. Treatment for mets is not as aggressive as non mets. Non mets they treat to cure. Mets they treat to control and keep life quality as high as possible.
My onc doesn't do tumor markers. Both my Onc and BS feel they are unreliable.
You can't assume the worst. You know that stats your onc gave you. The stats are in your favor that you don't have mets. No reason to think that unless you have some symptom. You don't get in your car every day thinking you will get into a car accident. You get in your car, but on your seatbelt and go. Chemo/hormone therapy are your seatbelts.
I wonder how many triple positive women with no nodes haven't posted that don't have mets. I bet lots more than have posted with mets.
BTW I'm no nodes with a very large tumor (5.5cm invasive about 6.5 cm if you include the DCIS part). I'm not worring about mets.
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Christean - I have had myself worked up for the last couple of weeks thinking I have mets too. Every little ache/pain, headache, etc has me worried. My eyesight has suddenly changed recently and I am convinced it is because I have brain mets. I know this is all irrational but I can't stop thinking about it! Other than an MRI, no additional scans for me. One of my oncs (I've gone through a few to find the right one) did bloodwork for baseline tumor markers but as Lago said, most docs don't feel they are reliable so there has been no additional testing.
Lago - You gave such a great explanation and it was delivered in such a way that it had a very calming effect. Thanks!
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Lago ur are hilarious!!! I was a (barely b) and droopy before surgery, so anything is an improvement for me,
(except the scars) ! Which brings me to the question.. did your BS or PS recommend Mederma or anything else to help fade the mx scars?Also my DH picked up some Latisse at Derm office last week for me. I have not lost my eyelashes or eyebrows (yet)!! but I figured couldn't hurt.
Anybody use this?
ps: I posted this on another thread too , not quite awake yet
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Stage 2B, highly triple, 6 1/2 years out! Just want to be encouraging to those still in treatment and post TX
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GREAT explanation Lago - you always seem to have the information and the best way to explain things.
I am node negative but prior to surgery, my BS ordered a breast MRI with contrast of both breasts and I had a full body CT scan.
Christean: Tuesday will be here quickly so try to take it easy and be as calm as possible.
JSandstrom: I know what you mean about every ache and pain and last week I mentioned to my onc that I had read that a cough was a symptom of breast cancer (I read that somewhere) and she said, he is a symptom of lung cancer but that my scans were all clear. The chemo causes so many side effects and pain that most of what we are feeling is the chemo running around the body (just my opinion).
Hi Bucky: I'm almost a month PFC and still have my lashes and eye brows but I hear they can still fall out. I decided against using the Latisse since everyone says that hair comes back quickly.
HAPPY SATURDAY Ladies and have a great 4th!
Arlene
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constipation help. A nurse who is a colonoscopy tech told me to drink Nutri Slim tea. I use 2 teabags to a cup of hot water and wow did it work in about 6 hours for me Possibly less or more for you. It comes in a bright green box in the grocery section where all the other teas are.0
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Panamajayne--Is it Nutri-slim or Nutra-slim? Two different teas. Nutra-slim tea has a laxative. Nutri-slim has green tea which is ordinarily fine but I was told to avoid it because it works against the chemo.
Might want to run it by the onc or chemo pharmacist to make sure it's compatible with whatever chemo you're on. I had a colonoscopy after TX1 and the nurse suggested something to me for big D that I was told to avoid. They know what they're talking about but they don't necessarily know what is ok or not ok when mixed with chemo.0 -
christean and yaya - I had an MRI prior to BMX which failed to show my positive sentinel and additional node. I had a baseline echo and PET scan prior to chemo, as well as CA27/29 which were all normal. Just finished chemo on 6/2 and onc offered another PET, so I had that last Thursday. It was normal but my CA 27/29 was not, and my Vit D was ridicuously low. He says we will retest the CA27/29, but he thought it might be a lab error, so that may reinforce the lack of reliability. Not happy about that, but will have to wait until 7/14 to know about it. The PET scan stops at the base of the skull so doesn't really show the brain in totality, for brain mets not a useful test.
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SpecialK - I have read that there is a lot of variability in the CA 27/29 measurement.0
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I sure hope so because I must admit I am more than a little freaked out since it was normal prior to chemo when all known cancer had been surgically removed. This last one is 3 times normal, 3 weeks after the end of chemo.
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Bucky my PS never said anything but my PT told me to use vitamine E oil (purchased at Trader Joes). It really kept the scars soft. Mine healed really well and flat. I found my port scar was raised. After a couple of months of vitamine E it went down. My scars are still pink but the nurse said my PS can laser them to make them lighter. I have heard excellent things about Mederma though.
Soccermom4force great news. Wishing you many more.
Constipation help. For me it's Metamucil and a probiotic or some stool softener. Stool softener is very very imporant as is drinking lots of water. Try to get moving (walking) too if you can.
SpecialK MRI is a better picture but it doesn't show everything. My BS didn't relay on the MRI for my node status. He really thought I would have a micromets, that's why the 10 nodes were taken on the left instead of a SNB.
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LAGO - I agree with the others, you have a great way of explaining things and laying the info out in a factual and direct way that is easy to understand. I loved your response.
SPECIALK - Oh, dear. I never had any tumor marker labs drawn so I can't imagine how you feel. How stressful! I hope this is merely a lab error and nothing at all to be concerned with in the least. Sending prayers your way as you wait...
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pejkug - thanks! And here I thought the stressful part was over... trying not to worry - onc says clear scan trumps lab.
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