TRIPLE POSITIVE GROUP
Comments
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I had scans prior to treatment but I dont' think it was a "baseline". I believe they do it to make sure you don't have distant mets. If you do this will change your treatment path. My BS said that if I had mets then I would be getting chemo first. I didn't ask for more details back then (because it was still very early and I didn't now all that much) but I wouldn't be surprised that if I had node invasion I would have received chemo prior to surgery.
My onc doesn't order any additional scans unless there is symptoms or suspicion.
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My doc doesnt do them either. I was so glad i convinced my pcp to to do a ct scan of the abdomen and pelvis, and then had a chest xray when I thought I was going to participate in the metformin study that I got booted out of.
I feel much better that nothing showed on those things. My onc said I will just want another one in 6 months, but I dont think so. I am good.
Now, a bone scan and brain xray.......... : )0 -
My onc doesn't do scans at all for Stage I negative node. Also does not check tumor markers. This is at a major cancer center. I did have LVI present though, which freaked me out but not my onc or BS. She still said no scans. Because of my various complaints of aches and pains and probably just to stop my obsessing, she did finally order a bone scan. Im ok with it for now, but I go from ok one day to freaking out the next. Hope that gets better some day.
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I think it depends on your Dx - and your Tx as to whether they do PET scans. For example, if you had no nodal involvement and BMX - is there a need? probably not. So I am sure they have their reasons. But you could always ask anyway.
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I think it depends on your Dx - and your Tx as to whether they do PET scans. For example, if you had no nodal involvement and BMX - is there a need? probably not. So I am sure they have their reasons. But you could always ask anyway.
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Since I'm finished (after #10) of Herceptin, due to reduced EF, my onc will do another scan. I'm thinking I'm happy about that. She also checks the tumor marker every 3 months (thus far) and also did the CTC which was zero....whether it is needed or not, I sure don't know but good results definitely make me feel better and that is half the battle for me.
I did ask about getting my port out and she wants to wait a bit longer. I don't see her (onc) for another 3 months so guessing it will stay in that long, unless I push the issue which I might.
I was having right rib pain and she did an xray and all was fine there....probably all the walking/jogging I've started doing again in prep for the Disney Prince Half Marathon coming up which I'll be walking....EF up to 50-55 so guessing that is ok since many start at that level. Wish she'd have tried to continue the Herceptin but she is adamant that it be stopped!!!
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Hi ashla,
You and I have a similar DX. Are you a nuclear grade 3?
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Dancetrancer,
You and I have a somewhat similar DX. Thanks for your input.
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Dancetrancer...
Will be thinking of you. Hope you are able to allay some of your fears with a clean scan!0 -
Tvanvossen,
Welcome but other than triple positive our dx is different. Good for you because your tumor is much smaller and a lower grade!0 -
Tvanvossen - I looked at your profile and see you too have a 3 mm IDC that is HER2+. Same as me, except mine is Grade 2. Oh boy do I feel your pain of being in the gray zone. You will see much discussion and extensive research I have done on this topic in the threads below. I have not yet made a decision. Do you mind if I ask how old you are?
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correction
Tvanvossen,
Welcome but other than triple positive our dx is different. Good for you because your tumor is much smaller and a lower stage.....not grade! I am actually a grade 2.0 -
No PET or CT scan here either ladies.
Even though I had involved nodes and LVI, by Onc swears they give too many false positives....so frustrating! I still make him tell me no though, every time I see him
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Hi ton lee,i was wondering if where you were since I didn't notice an recent posts.
My bs said that in some cases it is warranted and he also said there were high radiation doses with the Pet scans. He sid they were kept in separate buildings at the hospital.
I still might try for one sometime before I finish my yearly Herceptin. I'm not ready for it now.
I can tell that you're ready , willing and able to handle it. I'm not sure yet.0 -
Hi all - finished with my PET, but won't meet with the doc to discuss until late Monday. Ashla, had I known before scheduling about the radiation doses, I might have declined the test. (BTW, I never asked for it - my onc is the one who suggested it.) However, it wasn't until I had the appt all approved and made that I read a bit more and found out that it involves more radiation. At that point I wasn't about to back out, and I know this will also give DH some peace of mind, so I went ahead with it. Still, it was creepy seeing the little locked box with the radioactive sugar in it brought in (with those radiation signs on it) and then having it injected in my body! So maybe this will make some of you who want a PET but can't get one feel better about it. LOL
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dancetrancer
Didn't want to scare you about the radiation dose. I'm much older than you so that probably wouldn't prevent me from doing the Pet Scan. I'm 63. It's all the other psychological stuff for me. What good will it do me to know? My longterm survival will not be significantly improved by knowing.
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dancetrancer - I had a PET too. The dose of radiation is very minimal. I think after all my initial tests and surgeries I had the radioactive "airport" card 3 times. I was wondering when I'd start glowing in the dark!
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DT, glad you got what you needed. and it is weird seeing the rad box- i saw it when they did they MUGA on me. just wierd.
Arlene, maybe your onc wants it in so you can go back and finish the last couple of Herceptin if your rate comes up? its not too late to do that.
Much love to all
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Asha my dad turns 80 in April, one of my grandfathers lived to 88 and the other to 96. You may have a lot more time than you think.0
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Thanks Ashla - I know you didn't mean to scare me! You are way too kind for that.
It had already been on my mind before you even mentioned it. Kelloggs/moonflower - thanks! I suspect the excess radiation is more likely due to the CT scan part of the test, not the injection, but those little signs everywhere are a bit unnerving! And then they told me to avoid small children for 24 hours, too. Maybe I should go in a dark room and see if I glow, too, LOL! I could go to a rave party and not have to wear any special equipment to glow.
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Dancetrancer,
Despite the signs and all the rest, if I knew I could handle the news....I would do it regardless of age despite th radiation.
There are risks with everything and with all medical interventions and I've know several people over the years who had radiation treatments ...in higher doses in those days...who lived long lives uneffected by the rads.
You seem relieved you did it and that is very , very , very important! I pray you get the peace of mind you're seeking!0 -
My mom has had so many x-rays, scans she should be glowing. She's 73 and she never had any kind of cancer.
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I had a bone scan and several CT scans when I was first diagnosed. I thought one of the things the onc told me was that the CT scans use much less radiation than pet scans and that is one of the reasons she uses them. There was a study going on at the time (back in March) that the BS was running that I would have had to get a pet scan for. This would have been after the several CT scans and bone scan that I had. And then I would have had another Pet scan after surgery and then at certain intervals for follow up, but I really didn't want all that radiation. One before or after surgery would have been fine with me though. I do think anyoone who wants it to confirm the correct staging should be able to get it. I think that was the only reason I had them. Your doc sounds like a real piece of work TonLee.
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My mom was just diagnosed with Breast cancer IDC 1.9cm and is ER+/PR+ and HER2+. The diagnosis was based on her annual mammogram, so whatever started to grow, just happened within the year. She is 65 years old. She has already had a consult with the Surgeon Oncologist and he is recommending a Pet Scan. Should I be concerned or is this becoming standard protocol? He told my Mom it is just precautionary and would give him a baseline.
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laolson18 - a PET can be done for baseline and staging. They use a small amount of radioactive sugar that will attach to cancer cells and "glow" on the scan. Just remember that any test can have false positives and PET scans are no exception. If you trust your MO I would have the test as there is a very small amount of radiation given and it's pretty painless except for the injection.
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Laolson there is no way they can know from just looking on a mammogram that your mom is ER+/PR+, HER2+, IDC. I'm sure this was based on a biopsy. The mammogram probably gave the size but they really don't know for sure till surgery. The size can change (from what my radiologist told me). It could be bigger, smaller or even multifocal.
I had CT scans instead of PET scans. I think in my case it was to rule out distant metastasis. Either way this is not unusual.
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Thanks Kelloggs and lago. I am just trying to ease my concerns that the PET scan means her cancer hasn't spread. Yes, the biopsy gave all of the results. The ultrasound w/biopsy gave the size of 1.9. I keep hearing b/c the size of the tumor is small, it is most likely caught early.
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laolson18 - deja vu...my diagnosis is exactly hers, 1.9cm, ER+/PR+/HER2+ grade 2. I had lymph node involvement. A PET scan will check to see if the cancer has spread.....it doesn't mean that it has. Some docs do CT scans and some do PETs.
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My Mom's is Grade 3. Kelly did they stage you? What was your treatment plan?
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yes I was staged, unfortunately I had some small lung nodules and am considered stage IV. I had lumpectomy and am currently doing TCH X6. Will continue Herceptin for a year, probably Tamoxifen and rads. On a good note.....I had a repeat CT scan after my 3rd TCH chemo and the nodules had shrunk by over 50% and most of them were completely gone! I am hoping the rest of the chemo will kill the rest of those suckers! I will have my last one on 3/22. I certainly don't want to scare you, everyone's cancer experience is different and just because we have similar dx does not mean your Mom will be stage IV. Before my scan detected the nodules I was considered stage IIb.0
