TRIPLE POSITIVE GROUP
Comments
-
I had CT and Bone scans before surgery. My BS ordered them because there was time. If they did see something I bet I would have done chemo first. They did see something that they say is benign on my liver but my onc had me do a more invasive liver scan after chemo. She wants a repeat in a year… which will be Feb 7th. Yes I get my scans on my birthday because I'm so special
Personally I can do without the scans. Catching mets early doesn't do crap for survival or extending time from what I read. I don't want any unnecessary tests. It's a drain on the system as well as why expose to radiation you don't really have to be exposed to. But that's just my take on it. I also believe I am NED and will stay that way. For those who worry the scans might be the right thing for them.
0 -
SpecialK,
I think in my situation it is a combination of personality vs military ego/doctor ego.
I didn't just have positive lymphs. I had LVI that my BS said, "We got in there and your tumor had set up shop...had its very own blood supply." Then he told me "Of all your results I find that the most concerning. Though it's not unusual in about half of HER 2 cases."
He told me then (when giving me the results) I'd get a PET just because of the LVI...since I'm Her2. But backed off that when my Onc and I had it out over other issues, and then the PET. Don't get me wrong. My Onc is dedicated. But he's young and afraid to think outside the box...and the military at my facility says don't give PETs unless someone is dying. He's too timid to stretch rule.
0 -
TonLee - I also had positive lymphs and LVI, so glad to have been scanned. My positive nodes were a surprise to my BS, they did not show up on MRI he ordered prior to surgery. That may have also been why I had a pre-chemo PET. The post chemo PET may have come because my tumor marker blood tests after chemo were 3 times normal high, and had been normal before chemo. Also - my cancer center has their own PET machine so it is easy to get them done.
I am glad that I have only had to deal with military sources for diagnostic tests. At MacDill they only have a clinic. Actually, if they have no same day appts. they have now started to authorize urgent care referrals, which is awesome because there is a good one right down the street and the base is a 45 minute drive! I can have echos, US and regular PCP appts. at MacDill but nothing beyond that. All other care has been farmed out to Tricare civilian providers. I have been fortunate that Moffitt and USF are right here - lots of oncology/surgery options.
0 -
My onc doesn't scan early stagers. Sometimes I'm frustrated by this and want to know all is well, and other times it's a relief that she is so confident in my prognosis, and other times I just think ignorance is bliss. Depends on the day. Which makes for some schizoprenic thinking actually.
0 -
SARALMOM -My thinking is along the same schizophrenic lines as yours.
I didn't really press my onc for scans. I just casually asked if he would be doing scans. He was pretty matter-of-fact and said no. I never asked again.
I think an onc must have left the office where I go because the other ladies that have BC that I have sat in the chemo room with for the past year are all being switched over to the onc that I have been seeing. He's a little different and I wasn't so sure that I liked him at first but we seem to have bonded.
It's funny to hear my other BC sisters' first impressions of him... lol 0 -
I had LVI as well. One of the reasons I was a little more insistent.
0 -
Lago, what is the compounds in grapefruit that made medicine less effective? Is it because phytoestrogen it contained? Here is a link about some other plants contain phytoestrogen. I reposted here http://www.cyst101.com/phyto.htm. I still use sunflower oil to cook although most of the phytoestrogen is in the oil, if there is any.
0 -
meglove I don't know what it is about grapefruit but I know it has interactions with lots of other drugs. I kept seeing it pop up as something that reduces the effectiveness as Herceptin so I stayed away from it. I mean it cost a lot of money for Herceptin treatment. Seems like a total waste to go then eat some grapefruit, no?0
-
I take Lipitor and it also carries the no grapefruit warning. Some drugs are blocked by naringin, an ingredient in grapefruit, so you don't get the proper dose. Grapefruit intensifies the mechanism of some other drugs so you get an overdose.
0 -
I had LVI too. My doctors never made a big deal of that, and I remember questioning my breast surgeon about it when she gave me my initial path reports. I know I was concerned, but she said she was not. Again, sometimes I'm good with that, and other times I wonder if I should have pushed more about that.
0 -
Saralmom/meg/pej- I had the LVI also; asked my onc about the importance since she never mentioned it during pathology discussion. In her opinion, most women w/ po's nodes have LVI-how else did it get to lymphs??? Seems a little simplistic to me but I trust her totally:). Also of the no scans approach til symptoms and I am ok w/ that-it's my ostrich approach (or head in the sand). I honestly believe the scans would cause me to have a heart attack-just the anxiety from breast MRI last week has ne sick for days.........
0 -
Mine won't do scans either, although I managed to get a pelvis and abdomen ct and a lung xray for other reasons and all was clear. I was much relieved. Then, I had an echo for a heart check, and the tech askedd me if I polysistic liver disease. I said no, did she see something, and she told me she couldn't say. WTF? I immediately called my onc, who pulled up the mid November ct and said there was nothing there and he had no idea why she would have said that. said he was calling down to have a "conversation" with the department. So, now, of course I am convinced I have liver mets.
I am working on convincing myself that the ct radiation is not good and I need to "chill." I am going to try to talk him into a PEt scan a year after I finish herceptin if all is still good.0 -
Hi all....just ran across this, so am posting the links. The first is about the vaccine the military has created for HER2+ folks that Gale is developing. The second is a phase 3 study that is part of that opening up in centers. To be eligible, you have to be early stage, node positive, and have one or two + after your her2. Can't be a high expresser.
Hope it helps someone. The Neuvax vaccine sunds really promising. 0% recurrence.
http://seekingalpha.com/article/317735-galena-biopharma-an-emerging-biotech-company-with-promising-cancer-vaccines
http://www.cancer.gov/clinicaltrials/search/view?cdrid=717982&version=HealthProfessional&protocolsearchid=63717110 -
Special K,
My facilty has its own PET machine...just one floor up from the cancer center....so it's not like they're paying me to go outside for it.
Oh well.
0 -
My pathology showed no LVI. But I was node positive. It is my understanding that lymph node positive and LVI present are two separate issues.
0 -
LVI can be deceiving. My biopsy pathology showed NO LVI. U/S and MRI showed no lymph node involvment. Put me at stage 1 at the time. I was thrilled and my BS and oncologist seemed pretty confident as well. Then.........My surgery pathology showed 2/3 metastatic sentinal nodes and then 2/24 metastatic axillary nodes. I was devastated to say the least and it took a while for me to crawl out of my blackhole..
Biopsy report also stated I was ER/PR negative but final patholgy was ER +(95%) and PR+(70%). If I have learned one thing is that the final pathology report is the most important and decides your treatment plan.
0 -
Does anyone know if it is common to have no node involvement but still have LVI present?
0 -
Shore,
Yes. It is possible. A tumor can set up a blood supply, tap into the nearest vein and skip the lymph system all together.
0 -
Thanks TonLee, that's what I've been reading as I've been obsessing for weeks over it, but still don't get why my onc thinks it's no big deal (seems like a big deal to me). Said the chemo takes care of it, yet doesn't want to do scans. Very frustrating. I see BS next month so will get his take on it then -I was so focused on it being node negative after the bmx that I didn't ask all the questions i should have about LVI when the docs were not concerned about it.
0 -
Hi. Mind if I set up home here for a while? I think I belong.
In a nutshell, I have just found out that I am TP. I found this out when I went to the Radiologist Oncologist to schedule radiation. Imagine my shock, when he had the results that my BS had been chasing, and yep triple positive.
So my cancer journey, which was all neatly mapped out for me - lumpectomy with SNB and a breast reduction (for very big breasts that won't radiate very well) were all done in December.
Now, of course... everything has been blown out of the water. I have been referred to a medical oncologist and have yet to meet with him, but the RO said that being HER2+ really changes things and he is almost certain that herceptin and chemo will need to be done.
I've had a breast complication due to surgery where I have developed nasty cellulitis in both breasts. I spent 5 days in hospital last week on IV antibiotics. I came home marginally better and on strong oral AB's. However I've gone back to square one and am going back to the BS tomorrow. He was on holidays and hasn't seen me since the surgery. I'm guessing he won't be happy, but then neither am I. I am miserable
I'm also concerned about the timing of when I will start the chemo/Herceptin regime. I am guessing they won't touch me until this breast infection goes away. I've had it to varying degrees for 3 weeks now, and it's just not making any progress. So I am worried about that, especially now learning about how speedy cancer with the HER2+ proteins can duplicate.
I'm trying to stay positive, but I feel I am beginning to crumble ....
0 -
AssieKate timing wise you are still fine. I had a 6.5cm tumor (including invasive part) and I had to wait 7 weeks after my biopsy just to get surgery… and I didn't do chemo first. I had a high proliferation rate. As big and fast growing as my tumor was it still didn't reach my nodes. I too was concerned but I guess it doesn't grow that fast, just fast compared to normal cells.
The fact that you had your tumor removed and no nodes means the cancer out. They usually like to do chemo within 2 months of surgery but that doesn't mean that if you get it after that it won't work.
Shore I have read that in the past they put a lot of emphasis on LVI but then found that lymph node invasion was a much better prognostic indicator. LVI means little by itself. Yes what Tonlee said is correct but you can't assume you have that issue. It may not be as common as you think. There are HER2+ that have no nodes and LVI and get mets. Evethough I know this I'm not worrying about it till they truly find an issue.
Also scans can only "see" tumors of a certain size. If someone were to have microscopic mets the scans wouldn't pick it up. Just be sure if you have any pain, rash etc. that lasts more than 2-4 weeks tell your onc.
0 -
Sorry for your complications AussieKate. That does not sound like fun at all! They will definitely not start chemo while you are battling infection. Chemo can lower your resistance, and the infection can get much worse. Try not to worry about starting it so quickly. I think they usually wait at least six weeks after surgery before starting chemo, and I don't think it's too uncommon to wait longer than that because of waiting for healing due to complications from surgery. It looks like your cancer was caught very early and it is very likely you are already cancer free. And anything that could possibly still be there will be taken care of by chemo and radiation. You'll feel better once you have more information. Hang in there.
0 -
Aussiekate, I had excisional biopsy results 6/17 & didn't have surgery until mid august, and chemo started 9/21. I worried a lot about the time frame, but onc & bs kept telling me it would make no difference even though her2+. I really think when there are factors making faster action necessary they do it.
Lago, I wish I could have your attitude about not worrying until/if theres an issue. I know mets can happen in any case, LVI, nodes or not, I just have to get to a place where I don't think about it 24/7 and worry about every little ache. Between obsessing over that and whether tamox without an ooph or suppression will "work" for me, its all day every day on my mind. Hopefully I can start to get better about dealing with worry after chemo ends in 4the weeks.0 -
Thanks very much Lago, Shore and Kay. You have given me some much needed reassurance and peace of mind. I honestly don't know what I would do, or where I would turn too, if this site wasn't here.
Thanks again, Kate
0 -
There are exceptions to every rule.
This isn't a newsflash to anyone here I'm sure. But that is exactly what goes through my mind when the Onc says we don't need scans, there isn't "proof" (meaning trials) that scanning saves lives by picking it up early.
There may not be trials on it (yet) to my knowledge, but in my own experience I have seen exactly how scans have prolonged life.
My Aunt went in for a scan of her spleen and while there, part of her lower lung was imaged. The doc called her and said there was something fishy on her lungs during the CT, to come back. She went back had a CT, then they did a PET. Lung cancer, both lungs, inoperable because of the extent.
She didn't have a single symptom.
They started chemo right away. Because of the type of cancer (forget the name, Peter Jennings had it) by the time you have symptoms the prognosis is usually about 3 months. So her Onc told her not to expect more than a year because they caught it "early" but not early enough for surgery, not early enough to save her life.
She started aggressive chemo. They scanned her every 3 months.
She took chemo for over 5 years!!. It kept her cancer from growing. We know that for sure because she had to take one 3 month break and it grew crazy fast. When she started a new experimental chemo, it shrank almost back to where it was before the break.
Her Onc told me, without a doubt, if that accidental scan wouldn't have caught it, she wouldn't have lived a year longer. It was growing too fast and by the time she had symptoms it would have been weeks from death.
So in that case, a scan didn't save her life, but she got 5 good years. In the end, her lung cancer was no bigger, no more wide spread than when she was diagnosed! (She didn't die of the actual cancer, chemo weakened her and she died of complications from it.)
And one more anecdote. I go to a civilian and a military facility BC group. My civilian sisters get scans, all of them. My military ones do not.
I know three women who were originally STAGE 1 but scanned and re-staged 4 with mets. No symptoms. They started therapy and are currently NED (one 5 years out!).
A woman in my military group went in for hip pain 6 short months after chemo. By the time they got around to ordering a PET (about 4-6 weeks after original complaint) she was in agony. They ordered it because she couldn't walk!
She said her hip bones look like sponges they are so ate up with cancer. It's on her ribs and spine as well.
She uses a walker and is in treatment, but not having very good luck with it. (She was Stage 1, or so they said because they didn't SCAN her.) NOW, NOW, the Onc is saying, "well you were probably stage 4 all along."
They're talking to her about Hospice!
She was told over the summer after chemo and rads she was free and clear...no LVI, no nodes...NO SCAN.
I wonder, if they'd have scanned her, saw the mets, and she was receiving chemo the last 6 months...would they be discussing Hospice right now?
I doubt it.
And before someone says there are exceptions to every rule...yeah, I know. But you tell me...who wants to be that exception?
Scans may not "save" lives.....but they can certainly put you on the road to it.
0 -
Tonlee Amen to everything you say!!! My MO does a baseline PET scan for exactly that reason. I considered it a part of staging in a way because although I was stage I coming out of surgery it was quite possible that something else was going on. We all know how it works with Her2+ in particular and it's no big secret that this stuff is insidious and has often moved long before we are diagnosed or reach the point of surgery. My PET scan was clear and I remained stage I but I needed to know. What if I was actually stage IV without symptoms? As you point out, there is a lot that can be done to manage stage IV and improve quality of life and there is actually a benefit to knowing sooner rather than later in many cases. I don't advocate for over-scanning and I don't think my MO intends to do anymore scans unless I have symptoms but it seems that we should all have one PET scan (unless we don't want one) if for no other reason than to confirm our stage and give us better options. I agree with you Tonlee.0
-
Shore I too was still a bit worried going through chemo and after. You will find as you heal and feel better/more like yourself it will be easier to have my attitude. When you feel crappy from all this treatment it's constant reminder. Yes you will get there. Remember being a survior means living your life not worrying about when it will end.0
-
shore and Ton Lee-I feel exactly as you. Over the next three months, I am going to work like crazy to get him to agree to a pet scan when I am done with herceptin in March.
Whoever mentioned a rash....now I am newly paranoid. Over the weekend I developed an itchy rash on my left side (the cancer side) that is in the area of the drain, under my foob a little, and a little spot at my bra strap. Now, I will worry about that as a recurrence sign. I really think I need to quit weaning mysef off pristiq and just stay on it for life! lol.
I did have my annual skin cancer checkup today and had him look at the rash. He thinks it is excema (spelling?) and gave me a steroid cream to use, but told me to call in two weeks if it isn't gone. I've been on an antibiotic for a sinus infection, so I am hoping that is the cause.
Next week I see the PS and have a herceptin infusion, so I will address it then if needed. I hope it won't be.
Have you all been following the her vaccines the military is developing for Her2?0 -
tonlee, thank you for what you wrote. it makes total sense and i agree wholeheartedly with you.0
-
Fluff,
I think there is a fine line between obsession and vigilance. hah.
I think every woman has to draw her line in the sand. Some women can think about it all day all the time and not get negative. I can think about it everyday. I do think about it at some point every day. But I don't spend tons of time worrying. I'm not a worrier by nature...a bitcher, but not a worrier...buwhahahaha.
I don't expect to get a scan and even though I think my chances of survival would be better with it...well, I can't write the script so it is what it is. I'll bitch at the appropriate people, and occasionally I will grump about it here. But I've pretty much taken the attitude that if its coming back, its coming back. Scan or no scan, that fact won't change.
One thing that helps me, and I've mentioned it before....when I start thinking about METS..I think about the women I personally know who have it. Even the really bad cases are over two years in treatment. So I think in two year increments. At the very WORST I have two years.
When that feels like a relief to me, I know I've been thinking about it too much and my perspective has turned negative.
I go to get a fill tomorrow morning. Now THAT kinda freaks me out since my skin is radiated.
If you hear an explosion from Ohio way...that's my frankenboob detonating!
Have a good night ladies
0
