TRIPLE POSITIVE GROUP
Comments
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Ok - cat puke advice. I have two cats - my oldest one is 15!! About a year ago he started puking almost everyday, sometime multiple times a day- was losing fur and limping alot. I thought he was just getting old and on his way out. He was having trouble even jumping up on the bed. I started researching the puking, fur lose issue and ran across suggestions of allergies and I decided to start eliminating things to see. I picked seafood first - don't know why - but that is what I did. He hasn't puked once since then, his fur came back totally and he runs around like a kitten now and can jump up on everything. Now I had him for 10 of his 15 years - got him at the humane society and he never had issues with seafood until that year.
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I still have dark day's till this day but I also notice it's when I'm alone or when I hit the pillow. I sometimes think I'm doomed I'm dying in a few years. I feel 10 years is not shit I was 43 when dx and I want to live like great grandma to ripe old age 89 years young
And I feel with the dx of cancer there is no way I'm making it to that. But some how I pull my self together and move on. 0 -
lago, your visit with the onc today sounds stressful. I'm kind of freaked out about her saying hormone positive is a chronic condition - like diabetes.
Re: the ILC - do you think she was confusing the LCIS in your other breast with the main tumor? Strange all the way around.
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On a positive note I had boat motor trouble and a person came over and helped. When we where done I asked what do I owe you? I was going to pay the man and he said No you owe me nothing maybe karma will come back to me and so I said ok and thank you so much. I was so happy and also never was told something like that before. What a nice man.0 -
Ang, you are so right. When I first met my mo we were discussing the increase in young women with bc (when I got my dx my first thoughts were of my daughter getting this, freaks me out more than having it myself). Anyway, he tried to be reassuring saying "even women with mets are living 10 years". I responded "ten years isn't much if your 30 years old". They do there best to say the right thing, the thing that will make us feel better, problem is there's no right thing to say. We need to accept and move on and live without fear of the unknown, a pretty tall order, but those of you who are a few years out are good examples of how to do it.
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Linda, my cat is 15 too. He's been puking for awhile, but otherwise seems healthy, no hair loss, moves around well. He's been on the same food forever, he gets uti's on any other food. I guess he could have developed an allergy, but switching foods would mean risking a uti. The puking upsets me more than him, he's begging to be fed right after it happens. I suspect there could be an underlying problem, I figure it will show its self soon enough.
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lago - can you elaborate on why your onc prefers an AI - I believe it offers a slight survival advantage but there are bone and other issues (as you know - sorry you are having such a tough time of it with those damn drugs) - im having this discussion w my onc tomorrow
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ang7894 can you please tell me why your stats show you had rads? Did your MO suggest it even with neg nodes?
I agree about the 10 yrs. I'm not quite 42 so 10 yrs doesn't seem like enough time for me. My MO telling me I can live with mets for ten years will make me feel better if I'm already 70 when I get them.
I'm not sure how I feel about Lagos MO telling her this will be treated as a chronic disease. On one hand, there are the drugs we can take to keep it away. On the other, I understand these drugs can cause serious SE and cause poor QOL. I wonder if by the time I've been taking them for 10 yrs, they will switch to 15.
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Debian-I am the freak out queen. I think about it every day at some point. I also would be happy if they would run a pet scan every couple years forever. I know that in all likelihood I had the last one I can talk him into a few months ago.
Lago-they don't like the thought of us doing nothing. I think it makes them feel like they are doing everything in their power.
LeeA-my onc and my PCP say that they feel early stage breast cancer is very close to being a chronic disease. I am actually ok with that. To me, it sounds long term and treatable, like high blood pressure or cholesterol. Even though the drugs suck.
As much as I hated putting chemo in my body, or taking tamoxifen or now Arimidex, I think there are many drugs that have crummy side effects. I am going to do my best to get through this and hope that I am like pbrain, and that after 6 months things will settle down. I'm buying the giant bottle of ibuprofen. BTW, some joint pain has started to occur, kind of like when I was first on tamoxifen. I haven't been able to work out the last few days. Going to really make an effort to stay on top of it.
I'm not sure where my docs are coming from, but my BS told me 7% and she thought actually less! and the Onc was pretty similar. However, I agree with Debiann on the stats. I have been on the the bad side of every stat in my diagnosis. In my case, the comment there is only a 4% chance that you have breast cancer turned out not to be reassuring.
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mom, if I were guessing for ang, it is because she had a lumpectomy. For me, if I had done a lumpectomy, it would have been strongly encouraged that I do rads also. Now, I think it is standard. The MO I interviewed told me that if it wasn't in my nodes, He recommended I take a pass on rads and keep that option as my wild card if I recur.
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LeeA I called her on the "chronic disease" comment. I came right out and said "so all we are doing with this endocrine treatment is postponing recurrence?" Of course she said "No" but I think she got my drift. Yes they are treating hormone positive as a chronic disease… but that doesn't mean it is. I know she was just trying to keep me from stopping all together. (She was also trying to prepare me for 10 years of this too).
No mix up with the LCIS. She was talking about my big tumor that is also "ILC" I cut her off and said "first time I've heard I had ILC. I did have a small amount of LCIS in the other breast." Now that the breast was removed no one is really too concerned about that.
10 Years Yup got the same when I first met my onc. Given that my DH has more then 10 years on my I wasn't all that impressed. He's not old. 10 years at 49 isn't all that impressive either. BUT they don't mean you will only live 10 years. They are just giving stats on NED status up to 10 years. The studies didn't go further.
Rozem my feeling is my onc feels you can treat osteoporosis, heart issues, and all those other SE but once you get mets you know you will most likely succumb to the disease or the treatment (and much sooner than any of those other things).
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lies. Damn lies. and statistics. Yeah. LOL
I too haven't had a lot of luck with the statistics either. Too many scenic detours leave me wondering what happens if I just jump the track! LOL. But i try not to think about it. It's hard because of my family history, and the fact I got it 10 years younger than my mom. And I breastfed my kids for an average of 2 years and I had 4! Didn't help all that much. LOL
Hey my cat did NOT puke today. LOL. I don't give home Party Mix treats. He will puke those up way to fast. But it beats peeing on the wedding veil.....
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I did not do reconstruction. My MX were 6 months apart. The PS I consulted and my BS both refused to begin reconstruction@ the time of MX due to my general state of health-poor. I had major SEs from chemo and new areas of shadowing on MRI during chemo. The PS said she did not want to touch me until at least 2-3 years out and I was close to where i was prior to BC. I met with her when I was 1 year out and she went over my options for reconstruction. I chose to opt out. I will be flat, a relative of Edward Scissorhands, and deal with it. Would I rather have boobs? Yes. But I have hurt every single day since the first FNB. 5 surgeries on one side and 3 on the other before nipples-nope. I am good. Last horrid experience with @#$#@ husband from hell am burned beyond belief with the male species. I have a dog.
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fluff - Since being on Anastrozole I have found that the more I move the better I feel. It's kind of strange. I feel a bit like the Tin Man in the Wizard of Oz. If I don't keep moving (walking) I'm going to really start squeaking and creaking.
Re: taking Ibuprofen - all my liver enzymes are elevated so I'm afraid to take anything right now. I'm hoping to get some answers on this, or at least get the results of last week's blood test. Elevated liver enzymes can be a side effect of Anastrozole (I sure am hoping that's what this is).
Re: being chronic . . . after reading lago's earlier post I did some searching and found a lot about metabolic syndrome and breast cancer. All of it makes me nervous but I live my life in the nervous lane so that's nothing new.
lago - I had a similar incident with my radiation oncologist who said there was evidence possible of lymphovascular invasion. I said "wait a minute, what report are you reading from?" I had never seen that mentioned in the other two pathologist's reports. It turns out it was HER pathologist's report (she had all my slides looked at by her hospital's pathologist). I really should have pushed her for a copy of that report but she was pretty busy selling me on radiation and I never did pursue it. Pretty stupid of me, in retrospect.
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Statistics and odds are not my friend either. My US was rated a Birad 4 - GP said - don't worry too much - 80 percent of those are benign. We know how that turned out. Then diagnosed IDC - BS said 80 percent of BC is IDC - woo hoo I am in the majority - then final pathology back HER2 - my BS says only 20 percent HER2 - oopps - sends for a MRI of both breasts - sees something in other breast - BS calls me and says come in I want to take a look at your right breast but don't worry - only 2 percent of women diagnosed with BC are diagnosed with bilateral BC - and we know how that turned out LOL. She looked at me that day and said Linda I promise you that I will never give you odds or percentages again LOL.
I told both my BS and my MO that I had my recurrence already it happened between Feb 11 and Feb 21. Neither one agrees with me but it is my story and I am sticking to it LOL
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MOM, It's pretty much protocol if you have a lumpectomy. Plus I think it was cause I had LVI was seen.0 -
Linda about 25-30% of breast cancer is HER2+ and a bit more common the younger you are. I had LCIS in the other breast. My chances of having breast cancer at age of diagnosis with my known risk factors was less than 2%. My chances of having it my nodes with such a large HER2+ tumor was 80%. So sometimes good odds don't work for you and sometimes (thankfully) you don't fall into the bad odds category. Yes someone has to fall in the 2% and 20% categories.
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The odds are not such an amazing thing to go by. Same boat different paddle! Percentages of me even getting BC were low, then PILC grade 3 Triple positive, kind of the ugly stepsister syndrome. ILC being the less common "old ladies" cancer. Not so much in my case. Age 49, would not have had my first mammo yet if they get to change those guidelines. ILC...slower growing...nope...2.5 cm tumor, 9 nodes and LVI in less than 10 months. Or a really screwed up Murphy (of Murphy's Law fame) is residing in me. Subsets of subsets....
Crap shoot I say.....saw the following photo on a blog the other day.
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I for one, fell into the the 2% chance of recurrence category after my first go round with BC. I always knew a recurrence was possible so I wasn't totally shocked when dx 2 came came along 12 years later. Now after BMX, ALND, and chemo, neither my BS or MO will even venture to give me stats. They say my case is so far out of the realm of normal of what they see that I don't fit into anything they can calculate. The only thing they say is that I have a chance of recurrence, probably 20% , but maybe even lower. They want me to stay on the AI, but can't give me any idea of what % it might actually be increasing my odds.
Interesting that they consider er+ a chronic disease. I had never heard of that before. It gives me something to think about as I struggle with whether to stay on this AI or not.
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My MO also called this a chronic disease. I know that statement was meant to reassure me that this is not that bad, but I took it as "so you do expect this to reoccur". I have a hard time putting a positive spin on things, lol. I still have 4 more chemos to get through, so atm I don't worry about the long term cause I'm pretty sure chemo will kill me. It is so hard to believe this is the cure.
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Debiann
It's hard sometimes but we really do have a great deal to be optimistic about . I was considered high risk on mammaprint and I had a 78% chance that it would not recur without ANY chemo or hormone treatments!
They just don't know who those who will recur are but they are coming closer ... Especially with us her2 pos ' .Most of the progress in breast cancer survival is in the her 2 pos arena.
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I have never been given a percentage for recurrence by any doctor I have seen for breast cancer, nor have I asked. I also had Mammaprint done and it came back high risk, as is the norm for Her2+ patients. Statistics and percentages are just numbers that reflect averages, not individuals, so to extrapolate those statistics for me personally is somewhat meaningless to me - I see it is as either 100% or 0%, since I can't know if I will fall into any other survivorship or recurrence percentage. None of us know unless we recur, or die never having recurred. All I can do is chose the treatment I feel most comfortable with, including a recurrence prevention vaccine trial - which I consider treatment, and then hope for the best. I can only live today, and today I don't have cancer.
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Ashla, for some reason the risk of no recurrance without treatment is the only stat that means anything to me. For some reason I feel better thinking I had a chance of this never coming back with just surgery alone, I'm just doing chemo for shits and giggles (lol literally shits and my bald head you can't help but giggle at.) I apparently have little faith in science, but I'm ok with God's plan for me, only time will tell what that is. SpecialK you are right, recurrance is either 0 or 100%, stats are important if your looking for trends in a group, but the only stat that is important to the individual is your current status and what your doing to maintain it.
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Debiann, I have my third chemo tomorrow. I know EXACTLY how you feel. I really thought long and hard about whether to get the tumor out and hope for the best. Chemo sucks! I never knew the extent of the SEs until I started. I got some I've never even heard of before. Of course the last few days I've felt pretty good, but I get so anxious knowing it's only temporary. The last treatment was so bad on me, the onc decided she'd lower my dosage next time. I pray to God it helps. I also pray for all of you going THROUGH this. We'll get to the other side, but it's not an easy ride.
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Debiann
They put us through a lot of treatments to improve our odds even a little because we just don't know who will recur.
You will notice some of us who are further out starting to question how long we want to continue these treatments and the cost ( in side effects and quality of life) vs the survival benefits.
I never questioned surgery, chemo, herceptin , rads . Hormonal therapy is something I may consider sometime in the future.
Try to be optimistic. They are working hard for new therapies and making progress!
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Good advice Ashla and SpecialK. We just don't know and do what we personally think is the correct path. I think most of us questioned chemo but most do it anyhow.
Oh a positive note, tomorrow marks 3 years since my last chemo. Funny how we remember these dates.
Yes, keep positive which is tough when you are going through the treatments but there is a light at the end of the tunnel.
My thoughts are with those of you new girls going through it all now.
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Congrats Arlene on your milestone ... How far we have come in more ways than one!
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"I don't worry about the long term cause I'm pretty sure chemo will kill me." Ha ha many of us felt that way at times. We got through it. You will too but when you are "in it" it just sucks. Have to play in the sandbox a few more rounds debiann but you'll get through it. Maybe kicking and screaming the entire time but that's OK. Just show up.
Congrats Arlene. This time 4 years ago is when it all started for me. (With the bloody nipple discharge). Weird how you remember that stuff
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Arlene - we are right together - had my last TCH 6/2/11!
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First of all-thank you to everyone who replied to my thread regarding being asked to do the clinical study chemo due to not getting a clear path result from chemo. What I dont understand at all is this: I did chemo first because I was her2 and they said that is the only way I could get the perjeta. Then surgery. Many do surgery first, then chemo. If it takes both chemo and surgery to knock out the cancer, arent we all not getting a completely clean path...how do they know when it is done the other way? And if it is all gone after both, why does it really matter what took it out? I dont quite get it. Gone is gone.
Last week I asked my BS what my chances for reoccurence were-and she told me less than 20%. She is the only one who has given me a stat. It is starting to sound like its a 50/50 crap shot.
Speaking of saying dumb things but meaning well-my mom was telling me about a lady at her church that has been battling breast cancer 18 years, and she has had three rounds of cancer. My goodness....do i want to go through all this for that long. I know it beats the alternative but if you spend all of your time sick and running to drs, is it even worth it anymore? I just hope like heck for all of us-it stays back. After this, i just want to get on with living my life fiercely-start traveling and doing more, enjoying more. I am not going to wait for retirement. I told my DH to get ready. Aint nothing holding me down after this...when I am well, my feet are going to hit the dirt running
Everybody better move out of my way-lol So-I am three weeks out of surgery today. Yesterday, I noticed my right lumpectomy breast was turning pink/red. Saw the PS yesterday for a fill on my left masectomy side. Had him look at it-he was concerned but was not sure if it was the start of an infection. So they gave me an IV antibiotic, sent me for blood work, and gave me a rx for antibiotics. I go for a follow up tomorrow. Today it seems a little darker, but not quite as tight. I see little red dots under my skin, almost like a rash/reaction to something. I sure hope its not infected....little worried.
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