TRIPLE POSITIVE GROUP

Ingerp

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. . .

coachvicky

Ingerp: I called my chemo "liquid gold" and did visualization of it working.

Vicky

Ingerp

vicky you always make me smile. Love that visualization.

shelabela

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

Ingerp

(((shelabela))) (<--can't remember if BCO uses that notation for hugs?)

ElaineTherese

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.

coachvicky

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

SpecialK

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.

Suburbs

Hi all. Below is a link covering the PCR topic. I'll find another which influenced my understanding of the conventional wisdom:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4961053/

Suburbs

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

Mommato3

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.

Blownaway

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!

SpecialK

blownaway - I had a BMX and I am still checking them, lol!

TriplePHtown

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.

coachvicky

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

moodyblues

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?

 

Ingerp

Lovely post, moodyblues.

coachvicky

Well said, Moody. I cried with happiness.

Vicky

Jstarling

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.

SpecialK

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!

Ingerp

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.

Suburbs

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

Jstarling

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

shelabela

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!

coachvicky

Jstarling

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

moodyblues

Ingerp, great quote from your kids.  Love it.

Ingerp

Apparently yesterday was my quote day. This, from my husband's beer bottle last night:

"Life is uncertain. Don't sip."

LaughingGull

Hi ladies!

Busy getting ready for surgery...making room in the closets and such. Surgery will be on Thursday. So it took me a while to answer, but I read all the responses and, although late, I want to thank you for picking me up again...Deni, Vicky, SpecialK thanks thanks thanks for chiming him, your support is very reassuring.

Congrats to Taco for those many years of marriage!

JVP as others said please take it easy and dont jump to conclusions just yet.

TriplePH, I was posting the same questions a week ago. I went for second opinion and read all the links vicky and others provided. Seems that there is no difference in rate of local recurrence or long term survival, and that in the end it comes down to you. It sucks when the doctors tell you..."well, it depends on how you feel, if it is important for you to keep your breast..." I was like, are you kidding me? Of course it is important. How can it not be? I was looking for clear guidance and I was thrown in disarray with having to make this decision myself.

In my case, I have very dense breasts. I also had some benign cysts removed in my mid 20s, and since then I decided to be very, very proactive with my breast screenings; first ultrasounds, then graduated to mammograms at 40, then 3D mammograms. My annual breast exam was performed, for the last 14 years, by a breast cancer surgeon with more degrees than a thermometer, fellowship at MSKCC and what not. All this screening and vigilance failed me completely. I had a clear 3D mammogram and exploration last summer, and three months later I found a lump in my underarm and big lump behind my nipple myself. Given this history, I didn't feel comfortable getting a lumpectomy and just trust the screenings to detect any future recurrence. I know that if I have a local recurrence that is also caught late, I will regret not having been more aggressive. Also I have small breasts, so if they remove half of it or a third of it during a lumpectomy, there will be not that much left behind, so why bother. My oncologist agreed and asked if I would be okay with more mammograms, biopsies whenever they find -or think they find- a spot here or there, etc. I won't be. And as others mentioned my self-exploration would consume me I am sure. So I am going for mastectomy. Talk to a plastic surgeon to understand the options. That helped me.

jstarling please take it easy. For me cold fresh fruit in the fridge (particularly watermelon) helped get me through breakfast and I had oranges and mandarins for snacks at all times. It will be over soon. Keep swimming if you can...it helped me a lot to regain my energy.

Cheers to all. Thanks for your support ladies and for showing me the way to go through this. Two days for surgery....I cant believe it.

Love and peace,

LaughingGull

TriplePHtown

LaughingGull, thanks for sharing your experience. Sending positive thoughts and prayers your way for a successful surgery and smooth recovery!!

Suburbs

LaughingGull, I experienced the same dismay when I switched breast surgeons. My first surgeon argued with me when I balked at the idea of a lumpectomy. Imaging had failed me. My second surgeon, best in the region super professional and highly rated, said it was my choice, talk to plastics. I was not pushed in any one direction. In hindsight, that and doing neoadjuvant therapy gave me time to reflect and get comfortable with my decision. I hope you find that same peace and send positive thoughts for a good outcome. Please keep us posted. All the best