TRIPLE POSITIVE GROUP
Comments
-
Ashla Fascinating article-thanks for sharing that!0
-
dancetrancer...yes that is the one. I would be going to the wake forest site.
0 -
That's very cool fluffqueen. Besides the travel, what are the pro's/con's you are looking at in deciding whether to do this trial or not?0
-
pm me your email and I will send you the study info. It basicallly requires being there for 3 days a month for 6 months, all at my expense. It doesn't appear that the side effects are any too terrible, but....just when I am finishing one thing, I will still not be able to get my life back to normal. I have a daughter who lives in California now and want to visit her often. This might interfere, I was hoping they would have a site somewhere in southern CA. That would have been perfect.
0 -
Hi All, I am pretty much jumping out of my skin right now for my Mom. She has her breast MRI today and hopefully will have the Pet Scan done this week also. The internet is driving my crazy. I can't help but think she is going to get the worst diagnosis. Please help calm my nerves. I have read conflicting reports that only 1% to 2% or up to 6% of all breast cancers are diagnosed at stage IV. I am praying my Mom is not part of that statistic. I am sure you have all been here. It is nice to see to see that most of you don't even come close to these stage.
0 -
Laolson so far your mom's stats look excellent. There is no reason to think she is stage IV. This isn't the time to assume the worst especially since so far it really doesn't appear that she is going to be a high stage. She has no symptoms. 1-6% is actually very small.
I had a 6.5cm tumor and my staging after surgery was better than my surgeon thought. (He thought for sure I would have micromets in the nodes and therefore be a stage IIIA).
I remember reading about HER2+ when I was first diagnosed on the Internet. Problem was most of the information was dated and didn't discuss herceptin.
Be patient. You won't know all the information till the final pathology after surgery. The scans will give more info. I didn't believe I was stage IV. Just seemed to unreal. I was scared about it but in my gut I felt this wasn't possible. My gut also told me my nodes were clear and I would get LE. My BS thought just the opposite.
Finally, as I mentioned before Stage IV/distant mets breast cancer is not the same as Stage IV lung cancer. Remember my friend who has had distant mets for 16 years! She's out of state and coming to Chicago for a conference this week. Her current treatment is working.So even the worst case scenario you mom could be around for a long time.
Hang in there. Your mom is being treated at a top treatment center. The unknown is always the worst part of this journey. I mean the worst.
0 -
Thanks again Lago!! I am positive once again. I know she will be fine. I had some anxiety early this morning before her test. I think her test is pretty much over by now. The unknown does really stress me out. I better get used to it though.....I am just hoping 6 months from now I will be able to look back and we will be in a better place.
0 -
laolson - Also take things one step at a time and don't think too far ahead. Right now it's the MRI. If you want to read on the internet just read about that. How they work, what they show. Don't read about stages or grades or whatever it's not that time yet. Maybe keep a journal too of your questions and thought so you don't have to try to rememeber them for the next appt with your mom. You could also think of special things to do for or with your mom to take her mind off things - like a trip to the park or coffee shop or library.0
-
Thanks Omaz for the advice. That is what everyone keeps telling me to do, take it one step at a time, but I am just not that type of person. I am an analyst by nature, so I want to know everything, the good and the bad. I am also a numbers person, so I try to way the risk of her diagnosis against everything else.
I wish I could do those special things like that with my Mom right now, but unfortunately I live 3 hrs away from her, so it is not that easy. My Aunts have been stepping in to help her with taking her to her apts. I will be coming down for the surgery and if she needs chemo, I will make sure to make it down for a couple of her cycles.
0 -
laolson - Sometimes the internet can be a bad place. I remember right after my diagnosis I was on every site I could find trying to get information on BC. It was overkill and only served to scare the crap out of me. To this day I don't indulge in it except for this site because this site has real women going through the same thing as me.
As far as staging.....please don't get wrapped up in that. I was diagnosed stage IIb after my surgery but was changed to IV after baseline scans found the lung mets. Of course it freaked me out, but I know so many women now who have been stage IV for 10, 15 even 20 years and I intend to be one of them! My TCH chemo is working and has already shrunk the largest lung nodule from 1cm to 4mm and most of the small ones are no longer there. I don't consider my stage IV dx a death sentence. It simply means I may need to fight a little bit harder.
Your mom will be okay and so will you. Once she has her surgery and you meet with her treatment team and get a plan, it will get easier and clearer. Hang in there!
0 -
Thanks Kelloggs! Did you get the Pet scan after surgery? My Mom is getting hers before surgery. If you don't mind me asking, how was your breast cancer discovered?
0 -
laolson I'm like you. I did a lot of research too but remember how things work on the internet. The more hits a site has (as well as better SEO) the higher it will come up in google. That means that older sites have more hits… and much of that information can be dated.
Also one study doesn't make it so. Use what you find on the internet to form your questions for the doctors as well as understand what they tell you NOT to find answers and you'll be much calmer.
0 -
One other question, for those who have had a PET scan, how long does this test last? Is it similar to an MRI where they have to lay in a tube? My Mom gets anxiety when ever she has to do an MRI, so she justs wants to know if she should take something to calm her nerves. Thanks!
0 -
laolson - My PET was after surgery, ordered by my MO. She always orders CT scans, bone scans and ECHO prior to chemo for baseline. The CT chest showed the nodules and they were felt to be too small to biopsy so she ordered the PET. I found the BC myself on self exam....mine was in the left breast outer quadrant and I felt it during self exam in the shower.
0 -
laolson - when she goes for the PET they will inject her with the radioactive sugar, then she'll have to chill in a room for about 45 minutes to an hour so that the sugar gets all through her system. They turned down the lights for me so there would be less visual stimulation (so that parts of the brain wouldn't light up for that reason, giving a false positive). This was a very boring part for me - couldn't read or do anything! LOL, I get bored easily. Then the scan is kind of like an MRI - big circle you go through while laying on a table. That only takes about 20 minutes. So, if she does get anxiety, she may want to take something, depending on her personality. However, check with the doc b/c you'll want to make sure that medicine doesn't conflict with the scan.
0 -
I had a CT scan instead of PET. You do go through a circle but it wasn't like the MRI tube. Also I found the MRI tube not bad at all because my head stuck out and I was face down. If I had to go all the way in, face up I think I would have freaked out. I'm a little claustrophobic. I dont' wear tight turtle neck shirts for fear my head and and hands will get stuck in them.
My CT scan looked like this:
Not sure if PET scan equipment is similar.0 -
My PET had a CT with it (PET-CT). The equipment looked similar to the one pictured above - but the tube was a bit longer. Part of the time my head was out of it, part of the time it was in it. They seemed to be sequentially moving my body down into the tube, starting scanning with my feet, moving upwards every few minutes by a few inches or so. Hope that makes sense.
0 -
Well, it looks like my Mom's MRI has been moved to Wednesday and will be done at Hackensack. The machine was too narrow for my Mom. They are going to see if they can coordinate the PET scan at the same time.
0 -
Laolson, as usual, more waiting. Hang in there.
0 -
Laolson I know they tried to schedule a couple tests and/or doctor visits in one day and I only had to travel less than 5 miles.0
-
hi ladies
question about hormone therapy
i have asked my onc and had a second opinion onc tell me there was no reason to use lupron shots or remove my ovaries (surgically) since i am in chemopause. I am on tamoxifen right now - MO said 2 yrs on this and then she would move me to an AI
i am 95% ER positive so my gut tells me that i should be doing everything to shut down my estrogen production - i have made another appt with a gyno
if i push for lupron/surgical removal can i go on a AI right away? i think they check your blookwork right?
thanks
0 -
The difference between taking an AI and Tamoxifen is rather small… but the difference between being on an AI for 5 years to Tamox/AI is the same. Ask your MO to discuss this with you.
The only reason why your MO doesn't start you on AI is s/he wants to be sure you stay in chemo-pause. Tamoxifen works for both pre and post menopause. At one time it was the only drug they prescribed because there were not AIs.
0 -
Hi all - PET scan results are in - overall are very good! No sign of metastatic disease at this time anywhere! Wa-hoo!!! My tumor markers were also good. Doc did remind me, though, that tumor markers are sometimes not a good indicator of being disease free - rather are more something you watch and if they go up significantly, THEN you look for issues.
However, the jury is still out on what is going on in the R reconstructed side. The PET scan did show mild superficial increased "activity" which they said is probably benign but needs to be evaluated. This is a bit concerning when you combine it with the fact that residual calcifications had been seen back in November when I had a mammogram done AFTER my BMX. We didn't biopsy it then b/c I was too small to localize it with a mammogram. Now that I've had a 2nd fat grafting, we think we should be able to find it either by stereo/US or excisional biopsy. I am having a repeat mammo and ultrasound done this Thursday.
Overall, though, I am thrilled and feel a big sense of relief!
0 -
Dancetrancer,
WONDERFUL, wonderful news. Now take a night and day or two off from worry! Relax.....and soak in the good news.0 -
Yay dancetraner, i like good news.
0 -
OMG dancetraner that's fantastic news!!!
0 -
Laolson...i researched everything also. I am having a kidney stone blown up next tuesday so I have been researching lithotripsy, and watching youtube videos. Also researched whether taxol or herceptin causes or exacerbate kidney stones. There are a few studies I found but not a lot of info. I swear it must! And everything is right...waiting is the worst.
Lago...it is a little scary our smilarities. I cant wear turtlenecks either. They give me a headache and I feel like I am going to suffocate or choke.
Looks like my port will come out during fat grafting on march 30th. I talked to the nirse navigator in m surgeon's office and she said whatever my onc says. He says get it out, so unless I decide otherwise, it will come out. Geez....the one time I am given some control, I cant handle it! Ll0 -
laolson. I have one daughter here and 3 in the USA. My 'baby' came for a visit this week. She is a doll. She got in from a 21 hour trip at 4:30 AM and was up at 6:30 to go with me to a PT appointment. I have 2 other girls in the USA. The other 2 are coming for a visit in a few weeks. They were all bummed about being so far away but that can't be helped. I do have a husband here who, although he is a usually a miserable failure at house husbanday, he has come through like a trooper on my bad days. I'm assuming your Mom lives alone? That would make a big difference in the worry department for you I'm sure.
Today my daughter and I will be going to visit the Kotel (Wester "wailing' Wall) in Jerusalem. I plan to put in a good word for all the gals on this forum with the Big Guy upstairs. Then lunch out and a visit to my daughter that lives here. I'm pumped for this visit and so glad we were able to plan it during my good days.
Peggy
0 -
My 'baby' came for a visit this week. She is a doll. She got in from a 21 hour trip at 4:30 AM and was up at 6:30 to go with me to a PT appointment.
Today my daughter and I will be going to visit the Kotel (Wester "wailing' Wall) in Jerusalem. I plan to put in a good word for all the gals on this forum with the Big Guy upstairs. Then lunch out and a visit to my daughter that lives here. I'm pumped for this visit and so glad we were able to plan it during my good days.
Peggy0 -
What a treat Peggy....enjoy your daughter!
0
