TRIPLE POSITIVE GROUP
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christina - the answers to your questions are yes, yes, and yes. We are fortunate to have hormonal therapy and Herceptin to combat these aspects though.
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christina001- as specialk says, yes, unfortunately that is what being triple positive means. Prior to the advent of Herceptin, and the knowledge of how the AI's work, being dx'd with triple + bc constituted a dim prognosis. HER2+ cancers tend to spread faster and to distant sites more quickly that HER2- cancers (not only bc, others also). Because it is not possible to eliminate all the estrogen production in your body (not that you'd want to), having ER+ cancer is also not "good". On the other hand, being ER+ allows AI's to work in keeping it in check. Interestingly, triple - bc, in my book is scarier and seems to recur more. Most recently, the stats are that apx. 25% of all bc's relapse, with a higher % being HER2+. With that, about 20% of all bc's are triple +'s. In your case, the tumor was small and no nodes involved so that was good. Grade three means the tumor is aggressive. Hang in there. Frustrating to hear that they are telling you repeatedly that the cancer is aggressive, as if you're not taking it seriously! I was told on the other hand "you got the best kind"! Is there a 'good' kind?
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I was a Radiologic Technologist back in the 70's. I looked at my husband CT scan of his spine and was totally lost. I could identify the spine but couldn't identify the stress fractures or the results of his previous surgery. I didn't even bother looking at my CT scan. LOL
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Christina agressive means fast growing and statistically can be more likely to spread/mets but that doesn't mean it will. Like Special K said we have all these guns to stop it in it's tracks. Triple negative is also a very aggressive cancer, more aggressive than triple positive. The only guns they got is chemo and surgery. We have herceptin and horomone therapy. Typically agressive cancers, if they are to recur do so in the first 3-5 years. After that I do believe the stats go down for agressive cancers (even for triple positive).
Update on nails. It isn't a yeast problem. The super special dermatologist is going to have me use this topical stuff for 3 months on my fingernails to see if it at least gets rid of the brittle issue. If it works I will be using it for a total of 6 months... so no nail polish for a while. So I find that insurance won't cover this med. Costo has the cheapest price at $185 per month! I was about to not do this till Costo said there is something else that works just as well. They called my SSDerm and she said OK. Now it's only going to cost me $20 a month. It does look like my nails are not going to unlift… Granted not the end of the world.
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Christina,
I remember when I was first diagnosed I was constantly hearing "aggressive" It was enough to keep me awake at night with thoughts of things "undone" at home. I was 47, had a Senior in high school and one in college. I remember when I switched to the Mayo they wanted to do their own ultrasound before surgery. The tech was looking at the other breast as well. She kept going over this one area, then asked me if I always did self breast exams. She said she was going to get the Doctor and would be back to have him take a look. I will never forget laying on that table thinking, "Good Lord, I already have an aggressive cancer on the other side, I'm going to be dead in a year" and sort of resigned myself to it. (it ended up being nothing on that side) It was just a very dark moment for me.
We as triple positive women hear that quite often. As everyone says we also have the good drugs. What this means to you is that you need to be very in-tune with your body from now on. If you have stuff going on with you that normally you'd chalk up to "nothing" you need to be more proactive in getting to the bottom of it.
Know that there is a strong sisterhood here that has gone through it and is here for you.
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BTW chemo is supposed to work really well on the aggressive stuff.
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very aggressive...i heard that MANY times when I was first diagnosed. When i did all my scans to check for spread I said "how can it have spread if my nodes were clear" So naive. The onc tells me with her2 clean nodes are good but unfortunately it can spread through the blood. I cried and cried for days after that. After my scans came back clean and i started chemo my onc sat me down and said "yes you have an aggressive cancer but chemo works really well on fast dividing cells, and we have herceptin which is a wonder drug for your type of cancer" He said that her2 have as good a prognosis as her2- because of herceptin. And yes, we have the anti-hormonals in our arsenal
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When I first received my path report from the biopsy, I was so excited because I was like "positive, well that's good!" Little did I know that HER2+ was not a good thing - but thank goodness for Herceptin!
As far as seeing my scans, I have not. I do have copies of the reports though. I wouldn't begin to know what to look for on the actual scans.
Regarding friends, some of my best friends are online friends! I am not naturally a social person and in the years that I was a SAHM, I became close with a group of ladies that all had babies in March of 2000. We met on Babycenter, moved to yahoo groups and finally ended up in a private group on Facebook. There are 9 of us and we have been friends for more than 11 years now...we have all met at least one other member in real life. All across the US and one in Canada. So I know that the people you meet online - regardless of the reason - can truly become better friends than anyone that you happen to be close to geographically.
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Hey girls, just read all the latest posts and I was thrown back to the day my oc said all the same words to me. I felt like I was in the room with each of you, hearing those same words, all over again. In fact, today, June 29th is my one year anniversary of my diagnosis! Today was also my 6th MUGA scan. Will get one more after the last round of H, on August 14th, followed by a PET scan. Still haven't decided if after losing the first PS, and not happy with the two I've seen since, whether I'll even have the precautionary MTX at all. Happy (?) Anniversary to me.
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happy anniversary scottie! im right behind you..diagnosed in august of last year. My last H is apparently Oct 24th. So they are doing a PET after u finish H? they don't do that here
klb - my oldest was born in Feb 2000!
have a great 4th of July to all my american friends and if there are any cdn on this thread Happy Canada Day!
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I asked my oc, if it would be possibe for my own peace of mind, and he said absolutely! As others were saying, you begin to wonder why this aches, and that hurts when perhaps it never did before, and all it does is make you worry and stress youself out! I'd rather be safe, than sorry!
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Thanks for all the responses and support. I do feel so grateful that we have all these treatment options. I especially feel like the herceptin I am getting is a true wonder drug. Soltantio, I am having a UMX in August because my lumpectomy came back with bad margins. They gave me the choice of another lumpectomy or an MX, but two surgeons and my onc have expressed strong preference for the MX, to reduce the chances of reoccurance. I do not want to go through this again...have thought and prayed on this a lot and am at peace with having a UMX.
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Lago, I am seeing a nail doc in two weeks for the peeling and breaking. What is your cream called?
I think for testing, now that I have won my battle, I am going to get the bone scan and then wait until the end of the year for pet scan. That will give me time to think through how badly I want info.0 -
I didn't think it was that unusual. I am in the 90's for both ER and PR and +++ for Her2.
Jenn0 -
I'm also 90% or so for ER+.
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Fluff the expensive stuff was called Genadur ($285 a month at Costco). The stuff I'm going to try first is Urea 40% Gel CPL ($26 a month). It's actually made from horse pee. When the pharmacist told me this I said "well why couldn't I just have my husband pee on my fingers?) I don't think she got the joke.
Soltantio it is less common to be highly ER/PR positive and HER2+ but there are plenty of folks that are. I know I sent someone to my onc for a 2nd opinion. (My onc worked with Dr. Soloman on the trails over 10 years ago). She too was highly ER/PR and grade 2. My onc tested her again for that reason but was still HER2+. If you haven't had the FISH test I would get retested. Herceptin is expensive and isn't side effect free. Most of us are fine but if you don't need it why risk it.
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Lago - glad to hear you have something to try for the nails. Sorry to hear about the nails not going to unlift. Yes, not the end of the world, but disappointing, I am sure.
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Well the pharmacist said they still might come down. Seriously this is not the end of the world. Most folks wouldn't notice as long as I have polish on them… granted I won't be able to do that for a while now that I'm sporting horse pee.
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That's good Lago! Just make sure you say "giddy-up" several times a day to keep the horse pee working.
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Forgot to mention the pharmacist asked if I was planning on getting pregnant. I repeated "I did chemo." Then she said you could have stored eggs. I laughed and told her "I'm 51. Famly planning days are over." She was shocked to find out my age. Why do people think of women in their 50's as old?
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Lago, I really look forward to all your posts; your so funny and make me laugh sometimes. You've got a great sense of humor! Add to that, your a Chicago girl! I might live in Texas now, but as they say, " you can take the girl out of Chicago, but you'll never take the Chicago out of the girl". I was born and raised on the South-side. Later moved out to Oak Lawn. Please keep us laughing, it heals the soul!
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Scottie I hate to disappoint you but I'm MA (20 minutes SE of Boston… if you're driving the South East Expressway at 3AM. Otherwise 1 hour
) You think I'm funny. Onward & Robo will have you peeing in your pants.
Seriously laughter is the best way to go through life. So glad I can make you laugh.
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Soltantio, I was 95% er+ and 95% pr+. I was also taking the pill for many many years right up until dx last summer, unknowingly making things worse.
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Hi everyone, I had my last chemo (TCH) 4 1/2 weeks ago and my left eye is still excessively tearing. The tears sometimes are as big as raindrops. Has anyone ever had the tearing last this long. I am going to call my MO on monday to see if this is normal.From everything I have read on this board the tearing should have stopped by now.I am thankful that my right eye never did tear. Any suggestions to help stop the tearing.. Thanks in advance for your help.
Have a great weekend everyone. Hugs Eileen
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soltanio, umx is bi-lateral mastectomy. if you go to the "new to" forum, there is an abbreviation thread that is VERY helpful. I used it (still do a bit) a lot when I first started coming here. We use so many abbrevations it can be overwhelming.
Ladies, the hair on my head is DEFINATELY going. Falls out everytime I scratch my head. Cosi la vita.
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Eileeninohio I don't remember how long it took mine to go away but you might want to see an optometrist (the doctor kind). You could have a blocked eye duct. My eyes are still dry because the duct is a little blocked but not bad now. I just use artificial tears when it's too dry per my optometrist orders. In some cases they do need to unblock the duct but I think it's still early yet. Give it another week or so.
Vicklind it's time for the lint roller or sticky buddy. I'm not kidding. Granted I didn't try the sticky buddy. They didn't have those out 20 months ago.
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Thanks Lago.. I am going to check with my MO on monday. It is annoying,but no pain or discomfort. It just seems to me that this should have stopped by now. Hope you are staying in cool.. Eileen
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kayb, thank you for the correction; my bad.
lago, I have a few lint rollers and will put them to use. The hair is coming out slowly; everytime I scratch, it falls and if I gently pull, it comes out. We will see how long this takes.
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soltantio--I was 100 % er and 97 % pr and Her 2 +.
I quess there is no rhyme nor reason. shore--I was taking birth control pills up to diagnosis too. This makes it worse? Didn't know that
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Lago,
My right breast is smaller than the left, post-implant. It's strange because the implants used were the exact same size/volume. Do you think fat transfer would work to even it out? My PS said he could fix it - but it would require antoher surgery, which I'm hesitant to go through for the sake of symetry. Although, it bugs the crap out of me when I'm topless - I can make it work with clothes on - I keep thinking that I'm just being vain at this point - and shouldn't put myself through another surgery over this - but it really does bug me - I had the TE swap-out on April 9th - anyone know if there's still hope that the right one might be massaged into symmetry after all this time?
thanks,
Lucky
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