Dis Breast Cancer Survivors Part IV - GAGWTA

Wow this thread has really taken off, but love to hear all the positive responses and support here! Now for my own input I guess.

i don't know about the nodes....they see one lymph node that looks enlarged, but in the biopsy, i think the guy missed the lymph node and just got the fatty tissue around it (which was also positive for the cancer - so the cancer is spread beyond the tumor for sure...)...
the tumor itself is somewhere in the vicinity of 4 to 5 cm.....so i guess they consider it pretty big..

and with a lot of involvement in the surrounding tissue....

they did a pet scan which came up negative....so that's good...
hopefully, the cancer will react as it's supposed to ..

i was tested a number of years ago for BRCA....or maybe just the particular mutation my sister has on the BRCA2 gene...
but i was negative for her mutation (assuming they tested correctly)..

on sunday they're going to do a broader gene study....my cousin recently tested positive for mutations on the ATM and BRIP1 genes....so maybe i have those...

hopefully they'll do a more complete study on sunday than they did the last time...

and yes, we have a very strong history of cancer in the family....
my sister's BRCA2 mutation is from my dad's side...
but the vast majority of the cancer is on my mom's side....until now they weren't able to find a mutation on that side of the family, but that doesn't mean there isn't one...they just weren't able to test for it yet....but perhaps the ones they found in my cousin will turn out to be THE mutations on my mom's side and then they'll finally be able to test everyone...which will be a great relief for all....

I know you mentioned in Israel they have the shot over the injection...I actually CHOSE to have the neulasta shot myself, returning every day since it was convenient for me and the thought of something attached to my arm and scheduled to just go off the next day at some point...no thank you.

Sounds like your medical team is on top of everything for you and here's hoping the chemo does it's thing for sure so you can get to surgery and beyond as soon as possible.

I also did genetic testing and have the ATM gene mutation. That just means I was at higher risk for having breast cancer at an early age (I was 45 at diagnosis) and have a slightly than normal risk for pancreatic cancer as well. I've spoken to genetic counselors and other doctor's at Johns Hopkins here about my treatment and so far we feel that everything I've done for my breast cancer ER/PR+ but HER2- was the best course. I also have a strong family history of cancer. Grandmothers on both sides died from it...paternal was melanoma (as was one paternal uncle), had a paternal aunt with breast cancer (still living, diagnosed in her 70s and still alive and in her 80s) and one with stomach cancer (deceased in her 80s after a very short battle). My own mother had breast cancer at around age 60, was almost 5 years clear from it after treatments, and then got lung cancer (she was non-smoker) in 2012. She died almost a year ago after a battle with that, so the last 10 years of her life was up and down battles with cancer. Her own mother died in her 60s from colon cancer, most of my mom's maternal aunts and uncles had various forms of cancer and died from them. So yes it is strong in my family as well. I wonder if there is a mutation also that hasn't been discovered but I've felt for a long time that I was destined for a cancer diagnosis, so mine didn't surprise me at all...just surprised me that I was diagnosed so early since most of my relatives were in their 50s, 60s and older when diagnosed.

Good luck to you and definitely keep us informed. I'm with you about your mom, and having to take care of her when you will be going through so much might be very tough.
 
Wow this thread has really taken off, but love to hear all the positive responses and support here! Now for my own input I guess.



I know you mentioned in Israel they have the shot over the injection...I actually CHOSE to have the neulasta shot myself, returning every day since it was convenient for me and the thought of something attached to my arm and scheduled to just go off the next day at some point...no thank you.

Sounds like your medical team is on top of everything for you and here's hoping the chemo does it's thing for sure so you can get to surgery and beyond as soon as possible.

I also did genetic testing and have the ATM gene mutation. That just means I was at higher risk for having breast cancer at an early age (I was 45 at diagnosis) and have a slightly than normal risk for pancreatic cancer as well. I've spoken to genetic counselors and other doctor's at Johns Hopkins here about my treatment and so far we feel that everything I've done for my breast cancer ER/PR+ but HER2- was the best course. I also have a strong family history of cancer. Grandmothers on both sides died from it...paternal was melanoma (as was one paternal uncle), had a paternal aunt with breast cancer (still living, diagnosed in her 70s and still alive and in her 80s) and one with stomach cancer (deceased in her 80s after a very short battle). My own mother had breast cancer at around age 60, was almost 5 years clear from it after treatments, and then got lung cancer (she was non-smoker) in 2012. She died almost a year ago after a battle with that, so the last 10 years of her life was up and down battles with cancer. Her own mother died in her 60s from colon cancer, most of my mom's maternal aunts and uncles had various forms of cancer and died from them. So yes it is strong in my family as well. I wonder if there is a mutation also that hasn't been discovered but I've felt for a long time that I was destined for a cancer diagnosis, so mine didn't surprise me at all...just surprised me that I was diagnosed so early since most of my relatives were in their 50s, 60s and older when diagnosed.

Good luck to you and definitely keep us informed. I'm with you about your mom, and having to take care of her when you will be going through so much might be very tough.

wow - sounds like we're related...
my mom also had breast cancer at 75...then about 5 years later she was diagnosed with lung cancer (also NEVER smoked)....she was treated for that as well (she's 90 now)..

my sister also never ever smoked but somehow managed to get small cell lung cancer ....and for small cell lung cancer that's almost unheard of....one of the top guys in small cell lung cancer said that in his entire career he's only treated four patients with small cell lung cancer who never smoked...
but again, my sister is the one with the BRCA2 mutation....unfortunately, they only discovered it after she already was diagnosed with ovarian...too bad they didn't figure out they should test her before that...

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I have an update I meant to post last month. I finally had a fasting cholesterol test a couple weeks before my last oncologist appointment. The numbers are not pretty. I am obese according to my BMI which does not help and I was at my highest weight ever when I took the test. Thank goodness my annual physical isn't for a couple of months so I have been working on diet and exercise to bring down those nasty numbers. I do NOT want to go on meds if I can help it. I had been taking anastrozole and my doctor said that might have contributed to the high numbers. I had been taking it for 4 years and he said that I got the most out of it already so he took me off of it. I'm planning to call my doctor's office and have them arrange for another cholesterol test right before I see my primary to see if the numbers have changed. Good news from my mammo ... everything is still clear.

On the non-cancer side, things are not great. I caught some bug while on vacation in WDW over NYE and had to go to urgent care twice. I tested negative for the flu and was finally diagnosed with a double ear infection and bronchitis the second time. I spent most of that part of the vacation in bed. I came home, started to feel better (even though I was still coughing a lot) and then spiked another fever this week. I made an appointment with my primary's physician's assistant yesterday thinking that I has another secondary infection ... and I was right. I now have pneumonia. My PA thinks that I had the flu in WDW and that they either tested me too soon or I had a false negative. Fun, fun, fun!
 
I have an update I meant to post last month. I finally had a fasting cholesterol test a couple weeks before my last oncologist appointment. The numbers are not pretty. I am obese according to my BMI which does not help and I was at my highest weight ever when I took the test. Thank goodness my annual physical isn't for a couple of months so I have been working on diet and exercise to bring down those nasty numbers. I do NOT want to go on meds if I can help it. I had been taking anastrozole and my doctor said that might have contributed to the high numbers. I had been taking it for 4 years and he said that I got the most out of it already so he took me off of it. I'm planning to call my doctor's office and have them arrange for another cholesterol test right before I see my primary to see if the numbers have changed. Good news from my mammo ... everything is still clear.

On the non-cancer side, things are not great. I caught some bug while on vacation in WDW over NYE and had to go to urgent care twice. I tested negative for the flu and was finally diagnosed with a double ear infection and bronchitis the second time. I spent most of that part of the vacation in bed. I came home, started to feel better (even though I was still coughing a lot) and then spiked another fever this week. I made an appointment with my primary's physician's assistant yesterday thinking that I has another secondary infection ... and I was right. I now have pneumonia. My PA thinks that I had the flu in WDW and that they either tested me too soon or I had a false negative. Fun, fun, fun!

that does sound like the flu...exactly what several of us have had (except for the pneumonia part)....DD went through 4 different antibiotics before she started getting better...though she's still not perfectly well....and it's been 4 weeks for her..
i'm on my second and third antibiotics (taking two at once)....

i hope you feel better soon....

as for the cholesterol, it's not necessarily a function of being overweight....
DH is very thin, but fights his cholesterol....for him the only way to keep his numbers in check is with medication...

DD, who takes after DH, is very tall (like him) and very thin......and she's only 32....yet she struggles with her cholesterol as well....it's not so high that she has to take meds, but she does take a lot of omega 3 which is known to help cholesterol..

i on the other hand, am quite overweight (ok, i admit it, i'm fat)...but i've never had cholesterol problems....
and my son in law (DD's husband), is also short and fat.....and he has absolutely perfect cholesterol....picture perfect..

so you shouldn't beat yourself up about the weight...at least in terms of the cholesterol....it's not necessarily the weight that's the reason....some people's bodies just naturally produce too much cholesterol no matter what they eat...

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so you shouldn't beat yourself up about the weight...at least in terms of the cholesterol....it's not necessarily the weight that's the reason....some people's bodies just naturally produce too much cholesterol no matter what they eat...
Thanks! I do think that some of it was the known side effects of the anastrozole. Obesity is also a contributing factor and my cholesterol was better at a lower weight. Of course, the flu/crud has been great for weight loss, LOL! Probably the only good thing to come out of it.
 
wow - sounds like we're related...
my mom also had breast cancer at 75...then about 5 years later she was diagnosed with lung cancer (also NEVER smoked)....she was treated for that as well (she's 90 now)..

my sister also never ever smoked but somehow managed to get small cell lung cancer ....and for small cell lung cancer that's almost unheard of....one of the top guys in small cell lung cancer said that in his entire career he's only treated four patients with small cell lung cancer who never smoked...
but again, my sister is the one with the BRCA2 mutation....unfortunately, they only discovered it after she already was diagnosed with ovarian...too bad they didn't figure out they should test her before that....

Oh wow...good for your mom for beating both of those. That's got to make you feel very hopeful.

Cancer just sucks overall and your sister...wow.
 


update -

finally started chemo!! woo hoo!!!

even though i was still somewhat congested and still taking the last of my antibiotics, they decided i was ok to start the chemo after delaying me 3 times for the flu...

so this past tuesday i started....first round of AC done, 3 more to go (before the taxol/carboplatin rounds)..

if my chemo day was day 1, then i'd say my hardest days were 2, 3, and 4....

today is day 5 and i'm feeling much better and more energetic....but still lazed away the day....it's the weekend after all...i can be lazy, right?

i'm absolutely thrilled that i've started..

i have to admit i wish they would surgically remove everything they see first and then do the chemo..

i worry that all those cancer cells will just keep multiplying in there..

but i get the theory of waiting...but it makes me nervous..

anyway, here's hoping my cancer cells are the kind that succumb to all this chemical warfare!!! :)


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My dear SIL had a huge tumor (although not breast cancer) and they did chemo to shrink it before they did surgery, could be this is what they are doing? Shrinking it first? I don't know much about the chemo as the DW only had radiation after her surgery, but, here's a great big :hug: for you! Stay positive, of course your cancer cells are the ones that succumb to chemo. :thumbsup2
 
My dear SIL had a huge tumor (although not breast cancer) and they did chemo to shrink it before they did surgery, could be this is what they are doing? Shrinking it first? I don't know much about the chemo as the DW only had radiation after her surgery, but, here's a great big :hug: for you! Stay positive, of course your cancer cells are the ones that succumb to chemo. :thumbsup2

yes, it's to shrink it....mainly to see that the chemo is actually working...

but still i'd rather get it all out of me...since in any case i plan on a double mastectomy so shrinkage for breast sparing purposes is irrelevant.....

but i can only do what they'll do...
 
If you haven't already, read Little Fires Everywhere. Can't remember when a book last moved and enthralled me like that one.
I have heard that was a really good book. I just read The Mountain Between Us....couldn't put I down. Read it in a day.
 
Disneyholic, best of luck to you during your chemo. Are you in Canada? Sounds like they treat you very well during major illness. Having someone help you through the logistics is so valuable.

Well, the chest CT was not fun. I had hives for two weeks. But no signs of cancer, pulmonary embolism or equally bad things. I just still don't know what's causing my cough. Back for a liver MRI next week, probably just a hemangioma but got to do those tests!

Six years out for the first tumor now, three for the second. Seems unfair to still be doing tests, does it not?

Daughter is hanging in there. We have decided to get her an Emotional Support Animal, found a six month old extra sweet hand raised kitten. She tried adopting an older cat, but could not find a kitty that wasn't too independent. At least I'm going to be a Grandma, of a kitty!

And now from the other side, my 88 yo Dad's step daughter wants him OUT. Problem is, they live in the middle of nowhere, MT, and I think his pension pays their mortgage and only car. Fun times.
Awe...so sad...hope he changes his mind!
 
oy....that's a really difficult situation with your Dad....he's in montana? is that far from you?
i'm not in canada, i'm in Israel...an american who's lived in israel for many many years.....so i have distance issues from my family (in michigan)...
my 90 year old mom spends about half her time here and the other half in michigan (near my sister)...
but now i don't think i can take care of her for a while...but she's planning on coming back here soon...she's legally blind, but still lives on her own...but whenever she needs help i drive over to her (about a half hour away)...but i don't think i'll be able to do that once i start this chemo....i don't know..
i'm kind of hoping she'll stay in michigan for a while longer...but i can't tell her that.....

are cats good as emotional support animals? are they specially trained for that?

why did you get hives from the chest CT? a reaction to the contrast they use?

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I have cats and they are definitely a huge support, as they are my only support and I love them to pieces.
 
update -

finally started chemo!! woo hoo!!!

even though i was still somewhat congested and still taking the last of my antibiotics, they decided i was ok to start the chemo after delaying me 3 times for the flu...

so this past tuesday i started....first round of AC done, 3 more to go (before the taxol/carboplatin rounds)..

if my chemo day was day 1, then i'd say my hardest days were 2, 3, and 4....

today is day 5 and i'm feeling much better and more energetic....but still lazed away the day....it's the weekend after all...i can be lazy, right?

i'm absolutely thrilled that i've started..

i have to admit i wish they would surgically remove everything they see first and then do the chemo..

i worry that all those cancer cells will just keep multiplying in there..

but i get the theory of waiting...but it makes me nervous..

anyway, here's hoping my cancer cells are the kind that succumb to all this chemical warfare!!! :)


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I worry about the cancer cells multiplying all the time. My mamo's have all been clear, but since I got cancer to begin with, why can't it happen again? I did the genetic testing and it came back negative, but still, I got cancer. I guess we have two options...either keep worrying about it, or stop worrying and enjoy life. Do what you need to, but stop thinking of it as a death sentence. We are all with you!
 
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First instinct after diagnosis is "get this thing out of me!" I think it does take care more of most of the problem, so normal. But if it works and the tumor shrinks, your surgery will be a lot easier.

The whole thing with Dad was a false alarm. His SO is recovering, and her daughter is a wild card. I guess her sister and nieces have her under control now.
 
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update -
finally started chemo!! woo hoo!!!
even though i was still somewhat congested and still taking the last of my antibiotics, they decided i was ok to start the chemo after delaying me 3 times for the flu...
so this past tuesday i started....first round of AC done, 3 more to go (before the taxol/carboplatin rounds)..
if my chemo day was day 1, then i'd say my hardest days were 2, 3, and 4....
today is day 5 and i'm feeling much better and more energetic....but still lazed away the day....it's the weekend after all...i can be lazy, right?
i'm absolutely thrilled that i've started..
i have to admit i wish they would surgically remove everything they see first and then do the chemo..
i worry that all those cancer cells will just keep multiplying in there..
but i get the theory of waiting...but it makes me nervous..
anyway, here's hoping my cancer cells are the kind that succumb to all this chemical warfare!!! :)
.

First and foremost, glad you have started the process and so far it's going well for you. I also found more like day 3-5 or so were hard, since day 2 was usually neulasta and the next day the effects from that would hit me...and last a few days. Definitely take time to be lazy and recover though! I was a bit crazy in that I wanted to stay as active as possible, I made sure to increase my fluids and take lots of walks.

I completely understand that that thought about GET IT OUT...we all go through that I'm sure. The day I was diagnosed, my first thought was I want it out and I'd have a total mastectomy. In talking with the breast surgeon, basically they told me outcomes were the same or better with lumpectomy/radiation so I went with that instead. The month I had to wait for surgery was long though, but I did chemo AFTER surgery when it was discovered that I had slight deposits in my lymph node. Radiation was the most difficult of all of my treatments, and that was last.

Hang in there and hoping this first stuff will be behind you soon enough and you can move onto the surgery!
 
thanks for all the encouragement!!

the reason i would have a double mastectomy is because of genetics.....gene mutations in my family...

you're right that statistically, breast sparing surgery is just as good as mastectomy in terms of outcome..

except for gene mutations........in that case an argument can be made for risk reduction by mastectomy...
 
First and foremost, glad you have started the process and so far it's going well for you. I also found more like day 3-5 or so were hard, since day 2 was usually neulasta and the next day the effects from that would hit me...and last a few days. Definitely take time to be lazy and recover though! I was a bit crazy in that I wanted to stay as active as possible, I made sure to increase my fluids and take lots of walks.

I completely understand that that thought about GET IT OUT...we all go through that I'm sure. The day I was diagnosed, my first thought was I want it out and I'd have a total mastectomy. In talking with the breast surgeon, basically they told me outcomes were the same or better with lumpectomy/radiation so I went with that instead. The month I had to wait for surgery was long though, but I did chemo AFTER surgery when it was discovered that I had slight deposits in my lymph node. Radiation was the most difficult of all of my treatments, and that was last.

Hang in there and hoping this first stuff will be behind you soon enough and you can move onto the surgery!


so between your chemo and surgery, you had to wait one month?

i was wondering about that.....given how bad i felt after the very first chemo, i wondered how i could stand up to surgery after 16 rounds of chemo...

but of course, everyone does it, so i will too..

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so between your chemo and surgery, you had to wait one month?

i was wondering about that.....given how bad i felt after the very first chemo, i wondered how i could stand up to surgery after 16 rounds of chemo...

but of course, everyone does it, so i will too..

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You are of course right about the genetic factor...my SIL had the BRCA genetic issue and chose double mastectomy and hysterectomy after she was done having both of her boys (who are 3 and 5 now).

Since I had surgery first...it was done in May....chemo began about one month later for me yes. However I only had FOUR rounds of TC chemo.
 
You are of course right about the genetic factor...my SIL had the BRCA genetic issue and chose double mastectomy and hysterectomy after she was done having both of her boys (who are 3 and 5 now).

Since I had surgery first...it was done in May....chemo began about one month later for me yes. However I only had FOUR rounds of TC chemo.

they did my mom's surgery first also....well...

her surgery was really before they realized what was even going on...

a 16 year old boy with a brand new drivers license ran a red light and slammed into her car....which saved her life..

the air bags and seat belt injured her so they did a CT in the hospital emergency and found her lymph nodes in bad shape.

so they did surgery...she was already stage 3 b or whatever....in the lymph nodes and all clumped up..

so those were all removed at that time...

really before they were sure she had breast cancer..

and then she did all the chemo and radiation......backwards in her case..

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