TRIPLE POSITIVE GROUP
Comments
-
Hi Ladies...I've been gone for about 12 days and wow - so much action here! I feel so badly that I have nothing helpful to say on topics such as LE, lumpectomy versus mastectomy, chemo regimens and more. I'm so glad there are ladies here that know quite a bit about these paths and decisions.
Laughing Gull - you've reached a decision and best wishes to you! I wish you well on the next phase here, and the main thing is that you feel good and solid about your final choice. You've given it a lot of thought and that is much more than I gave it. That said, I really had no choice - it was mastectomy for me.
Taco - WOW. 52 years. I cannot even fathom this. Congratulations to you on such a milestone. Are your husband and you looking alike yet? lol
.JVP, I feel your agony. When I was 7 treatments in- so, one away from being done - my oncologist didn't feel any palpable change in the tumour size (there had been some change after the second and third treatments). Imaging didn't show much change either. I was frantic because it seemed like I'd had about a 20% change maximum. I remember literally almost passing out in my M.O.'s office. When I met with my breast surgeon prior to surgery, he said to me 'you actually might be pleasantly surprised; I think it's going quite well". My pathology told me that I had a complete response. I was in so much shock that to this day I harbor this intense secret fear that my tissue was mixed up with someone else's after surgery. So, all this is to say that you don't know until surgery is done. And, if you have a 50% response, I think they almost expect this when women are hormone positive. Obviously everyone wants more response, but I was never led to believe this was highly likely. They said that besides surgery being the 'big money', it would be follow up treatment. I was asking friends who knew Oncologists to ask if I could have access to more chemo. I think Vicky is so right that if you want to explore more treatment when they know more, keep pushing until you get that answer.
I've been lying a bit low, as I was feeling crummy. In early April I felt a headache coming on which was persistent. Prior to that, I'd had 2 weeks of all-body itching. After a week of the headache, some dizziness settle in. And then a week after that neuropathic symptoms all over my body - burning patches, twitching, tingling, chills, prickling/itching (less than the initial 2 weeks). I also felt some malaise and chills. When the headaches persisted for two weeks, they ordered a brain MRI for me which I had this week. Thankfully, that is clear. 6 years ago I tango'ed with some kind of autoimmune flare. At that time, I had an autoimmune panel done and tested positive for two antibodies that are connected to Sjogren's syndrome. After a couple months, I was pretty much done with that and over the intervening years, I just have the tiniest episodes of twitches, etc. So I wasn't sure if this is the same thing. I'm presuming that it is. I was getting pretty worried with the headaches and disequilibrium. Today, the nurse told me that they saw age-related changes in my brain. A few months ago I had a scan due to pain in my upper thoracic spine...disk degeneration. So, basically, scans show us everything, including the aging process. I'm turning 50 years old next year, so it's nice to know my body is falling apart
. In all seriousness, I'm feeling relief tonight and I know you all can relate.I hope everyone is doing well. There are several new 'faces' on the board...I guess lots of people are lurking and jump in when they feel comfortable enough or have a need to. Welcome to the board, new TP's. There are insightful people here
Sleep well,
0 -
JVP,
my MRI post treatment showed my tumor decreased in half.i did not feel the mass anymore after the treatments.. after surgery, the "mass" seen in the MRI was actually the tumor bed with only residual cells. i did not get PCR but i got a pretty good response.. you will know for sure after surgery how well the chemo worked for you.HTH..
0 -
Posey - DH and I DID look alike - when I was bald! LOL.
Demi - can't say I know where Hartland is but yes, we have good Wisconsin memories. We met on a blind date in college and married in the college chapel the summer I graduated.
Must admit that I never believed I would be married more than 50 years. Ken has a terrible family heart history and we were excited when we got to 40. Like BC, lots of advances have been made in heart disease and we are looking forward to more international travel this summer to celebrate the end of herceptin (now if I could just pick something for the end of AI's but probably by that time we will need a caretaker to go with us). Like many here, life has presented its challenges for us but we are grateful to be plodding on together.
Happy weekend everyone.
0 -
JVP: my daughter (see profile below) didn't get a pcr. There were remaining invasive tumor cells with a huge newly discovered DCIS. She was told that HER2 pos/HR+ was not that likely to respond as HER2 pos/HR- does. Further, that pcr in our hormone positive case is not that significantly important for a good prognosis. After surgery they also examined the Ki67 stating it was a meaningful prognostic value: The lower the better. G
0 -
For those of you who have had heart issues in Herceptin, and those of you who have yet to receive it...something to ask your MO about?
0 -
First of all, fist bump to deni. (I was born in Michigan and lived there for eight years. And two of my kids went to college in Ohio. I am such a fan of the Midwest--I have said often that people are just more mentally healthy there.) (Although WI was the one place I've lived where I felt kind of short and dark.)
To the rest, wanted to share a quick story from the "life is funny" file. I had my pre-tx echo yesterday and had a very interesting conversation with the woman who did it. She really was not hippie-dippy but we talked a lot about having a positive attitude. She said she worked with cardio patients for years and she honestly believes the best predictor of outcome is your attitude going into and through surgery/treatment. When I said that I thought I was pretty positive, that I do feel like I might just have a bit of a crappy year but then this will be behind me, she said not to even assume I'll have a crappy year. She thinks being super positive can even affect SEs. We meandered around a lot but near the end I said I was very on board with rads last time because I felt like my left hooter had been behaving poorly. Told her I was struggling a little more with the chemo since it is a poison that will go through my whole body. And then she said, "I know this sounds weird but I really think you should visualize the medicine only going to the bad cells while you're getting the infusions."
Anyway. We exchanged several hugs when it was time to leave. But I swear this little chance half-hour conversation has improved my mood going forward. Life is funny. . .
0 -
0
-
vicky you always make me smile. Love that visualization.
0 -
ingerp, i have always believed positivity is essential to feeling good. Life's a bitch sometimes and you have to perfect that smile and get past it. I remained as positive as i could through everything, my Breast cancer dr sent me a screen saver that i used on my phone. I will try to attach it
0 -
(((shelabela))) (<--can't remember if BCO uses that notation for hugs?)
0 -
From the annals of "this too shall pass....." When I was diagnosed back in June 2014, my sons were beginning their rocky journey through puberty. Because they are on the autism spectrum, and not very verbal, it was difficult to explain to them that Mommy was sick and that their lives would change. One of them began to develop symptoms of depression and anxiety; the other became less cooperative and easygoing. Worse, they regressed with respect to their capacity to stay dry at night. After changing their sheets daily for a week (while doing AC chemo), my husband and I threw in the towel and started putting pull-ups on them at night. I thought we'd never get them to stay dry at night. Well, in the last two months, both boys have been dry almost every morning! Yay! It's only taken 3.5 years, but here we are, thinking about putting them in underwear at night again.
Just a reminder that while cancer poses all sorts of unintended challenges, someday, they too might pass.
0 -
Triple ... Welcome.
I am unsure if these references will answer your question but I wanted to share them in case they did.
At this link:
https://community.breastcancer.org/forum/91/topics...
In this topic: Lumpectomy or Mastectomy - How did you decide?
Forum: Surgery - Before, During, and After
Look for: Jan 2, 2017 10:51AM ruthbru wrote
Then scroll down and read the update:
Regarding Beesie's post copied over by Ruthbru above, please note that Beesie recently issued an update on Sep 15, 2016 that can be found here:
Lumpectomy vs. Mastectomy (Invasive disease):
https://community.breastcancer.org/forum/82/topics...
Always remember, it is your body and your journey. Do what will give you peace of mind. My choice eliminated me feeling my breast 24/7. I know me. I would not have kept my hands off them looking for "something." LOL
Best wishes,
Vicky
0 -
hap - it is important to note that trip pos breast cancer often strikes younger women, so the "older women" subset is smaller, and studies have fewer participants to collect data from.
I am with coach on the lump vs BMX - I knew if I did the lumpectomy I would do a self-exam when I woke up, another after my shower, another in the parking lot before going into the grocery store, another when I got back in the car...LOL! Just who I am, and how I roll.
0 -
Hi all. Below is a link covering the PCR topic. I'll find another which influenced my understanding of the conventional wisdom:
0 -
Here's another.
http://www.ascopost.com/issues/october-15-2014/pat...
It seems that a PCR when you're triple positive is not as great of an indicator of survival as that for other subsets. And not having a PCR is similarly not as great of an indicator of survival as that for other subsets.
Hope this helps
0 -
In regards to UMX, BMX or Lumpectomy...I chose a UMX. They told me I had dense breasts but really didn't go into detail about what that meant. I had an MRI in December of 2016 that showed something in my left breast. It didn't show up on my mammogram or ultrasound so I had to have an MRI guided biopsy. The spot was a benign fibroadenoma. Now I wish I would have had a BMX so I didn't have to worry about something lurking in my other breast.
0 -
SpecialK - that's funny. When my docs ask if I do self breast exams, I say,"Are you kidding, I wear them out checking them!
0 -
blownaway - I had a BMX and I am still checking them, lol!
0 -
Thanks for the info CoachVicky. I'll checkout those links. Certainly appreciate the help. I'm getting pretty nervous about the upcoming decisions and trying to stay positive.
0 -
I hear you SpecialK ...It is how I roll too.
Blownaway ...I do exams but I'm still afraid they are going to pop!
Vicky
0 -
Ingerp I liked your story about your pre-tx echo. I too believe (like you) that being positive helps you during treatment, recovery etc. I visualize each of my organs as healthy and cancer free. Some may laugh but even when I say my prayers I thank God for a healthy right breast, healthy lungs, a healthy liver (and I see it in my minds eye as red and healthy) etc. I am not a religious fanatic and never have been one but, when I was going through chemo I visualized Jesus taking the poison chemo into his body and releasing it into my body as a supplement/vitamin to mine. Yep, I did just say that.
Speaking of future events (healthy body, no mets, no reoccurrence) with as much certainty as though they were already past.
I am pretty positive all the time and my one daughter has looked at me as a bit crazy when I seemed to find the silver lining in some of the worst circumstances. It is easier for me to live - looking for the good in things, that is. Am I perfect at this all of the time? No. I could have been a wench when all of this sucky stuff happened but it would have made everything so much worse.
Some may look at my positivity as unrealistic and I look back and feel it's the only way to go on living each day after a dx like I have had. I can live each day in the moment or worry each day and ruin every moment of every day. I choose life.
So, I leave you all with this one thing. Have you done one kind thing today to help make someone's day a better one?
0 -
Lovely post, moodyblues.
0 -
Well said, Moody. I cried with happiness.
Vicky
0 -
Well said, Moody. You just have to keep going forward and cherish what you have. I am day 5 of my second TCH and I can’t help but feeldown sometimes when I think of what is still ahead.
0 -
jstarling - I know this may not work for everyone, but I counted down the infusions by percentages - after two I was 33% done. I also found that writing the dates in the form of a list and crossing them off as I did them was helpful in feeling like I was accomplishing something. It is all mind games but we do what we can to get through, right? Something else is to do something a little celebratory after each chemo - buy yourself a little reward or do something fun - you've earned it. When chemo was done I did something very unlike myself - this is going to sound weird but I bought myself a piece of pretty expensive jewelry. This was a ring I had seen the Christmas before when shopping with DH - he chose a different one for me, which I adore and wear all the time, but I also liked this one a lot. The price point meant it was something that normally would have kept me from buying it for myself, but it was on sale and I had a coupon that made it half-price, so I bought it - I thought damn, I deserve this after what I have just endured! It was super impulsive - I didn't go into the store with the intent of buying any jewelry, I was there for something else. When I told DH I bought the ring - he said yes, you should have it - you've been through hell! When I wear it I look down at my hand and view it not as a reminder of a bad experience, but rather just how badass I can be when I need to, and just how much I wanted to live to see how the rest of my life turns out. You can do this - we are here to lift you up when you are feeling down. Those of us who are on the other side of chemo totally understand right where you are - you are still on the uphill part of the climb, but you will get to the top and then start on the way down!
0 -
I heard a quote yesterday (oddly enough from one of my kids) that I thought I'd share:
"If the mountain were smooth, you couldn't climb it."
Seemed appropriate for what we're all going through.
0 -
Jstarling, at this time last year, I had finished 4 of 6 TCHP and was facing surgery in June. I understand exactly how you feel. I had to start Prozac around #5 or #6. It's really a tough regimen. I knew I wasn't alone as there were other ladies here doing the same treatment around the same time. I posted to the board frequently which really helped. The triple positive treatment plan is longer than for other early BC. Everyone is here for you. Post when you need support and you will find it. It gets better. All the best
0 -
Thanks so much. I have no excuses, We are recently retired and I have a wonderful husband who has more than stepped up to the plate, my grown children and grandbabies live over a thousand miles away but check in everyday. My knitting, swimming and church friends call to cheer me on, but it is still so overwhelming. And right now nothing tastes good. I had a piece of cinnamon toast for supper
0 -
jstarling, we are here for you! You have a whole group of cheerleaders behind you. I found smoothies helped me get my extra nutrients that i needed. When food doesn't taste good it's hard to eat. As Hap said you need to try to eat.
Hugs!
0 -
You write: I can't help but feel down sometimes when I think of what is still ahead.
Here is your reframe: Life is ahead! Knowing I was going to live is what kept me going.
Yes, some days this treatment is a crap sandwich but it beats a dirt sandwich.
I found if I ate well in the morning, the rest of day didn't matter. I had protien, fruit, veggies every morning.
Keep posting. As others have shared we are cheering you on!
Best wishes,
Vicky
0
