January Mastectomy

Cindy,

You and I have almost identical cancers and are around the same age...I'm assuming you still have a uterus?  I don't but I do have ovaries.  I don't want to get a score of 11 and choose to have chemo...although I know I may end up doing it in the end.  I guess feel like why did I take the test if I'm not going to heed the results. 

Are we just big lab rats with our outcomes to be determined in 10 years?  "Well here's Cindy and she chose chemo and here's Kat and she didn't and the verdict is.....

Are they all banking on these two same cancers with different paths taken to make their conclusions?   

That is what is making me absolutley crazy!

Kat, I understand completely about this Oncotype DX thing making you crazy!  I haven't posted much in this thread about why I went with chemo because I don't want to influence you and others with similar cancers.  Plus, I don't want you to feel as if the decision you make is wrong if it is different. We all have our reasons for deciding whether or not to do chemo, and if it feels right to you and your onc, then what somebody else does shouldn't matter.

That said, I'll tell you what made me do chemo, but please realize this is only coming from my little brain. I had a grade 3 cancer, very aggressive. I'm only 49, still young enough to have many potential years for the cancer to recur. Yes, my uterus is still intact and my ovaries are still working -- in fact, I just got a period one week into chemo. Since I am ER+ and PR+, both in the 90-some percentile, shutting down my ovaries a little early via chemo may work in my favor cancer-wise. Since my cancer was on the move, starting to go to the nodes, it made me fearful that a stray cell or two may have escaped somewhere else. With chemo, any stray cells should be killed, and that's much easier for me to live with mentally than always wondering if anything is still hanging around. I know Tamoxifen is supposed to keep any cells from growing, but I feel more comfortable killing them first with chemo then picking up with Tamoxifen. It's all your own personal comfort level.

The Oncotype DX test is only one tool in our decision for chemo. The test itself is only a few years old, and although it's a marvelous leap forward, I personally don't feel comfortable accepting it as gospel. For me, it goes back to the fact that it still hasn't been proven for pre-menopausal women with node involvement. My onc said we should mentally add a few points to the score to account for the node involvement, but again, that is best guess at this point.

Am I happy I took the test?  YES!  I am delighted and actually shocked that I had such a low score. It makes me feel great to know my risk is that low, even though it should be adjusted slightly upwards because of the nodes!  Has it changed how I am being treated? YES!  Instead of a longer dose of chemo or maybe more potentially harmful drugs, I am only having a short round. So although I may not have used the test for the purposes intended, it has still been of great value to me. I do believe it is a great test, just not the definitive test for someone like me -- at least not yet. I believe it can be generally believed for those of us with node involvement, but I'm still too scared to accept it completely. I may be too conservative in my thinking, so please don't allow my fears into your mind. If your onc believes in it absolutely, then that's much more important than what someone like me thinks.

Kat, these are only my thoughts and feelings about it, and I freely admit that fear of the future weighed heavily on my decision. Whatever you decide, know that it's the right decision for you and what anybody else thinks makes no difference. Do what you are comfortable with.  I hope you have a great low score!

Cindy

CinD,

Thanks for the encouraging words on chemo.  I stopped by the onc's office today as I was at the hospital for second round of fills today anyway.  I met with the head nurse there (who happens to be my neighbor's sister).  She took an interest in us and met with us ahead of time and recommended the onc that specializes in breast cancer only.  I knew she was concerned about the 2 surgeries, so I popped in so she could see I was upright, dressed, and pretending to be "normal".  She was glad I did; said it is one of the things they look forward to!  I asked her about the chemo and she gave me a contact (a chemo nurse) who has been there 30 years and seen it all.  I will call her and see what advice/recommendation/information she can give that might help in the decision process. 

Kat,

They didn't do any labs because the decision is still up in the air until we get the test back.  But I am sure they will do a lot of "benchmarking". 

Re the 2nd round of fills.  This was incredibly easy.  Only felt two very slight pin pricks.  Did 100cc in each breast (first fill for the right since surgery and second the for poor, sad left that had been deflated after surgery and filled again last week).  I forgot to take any med's before I left, so I popped an 800mg Iburprofen.  I feel fine. (NOW); we'll see if sleep is an issue tonight.  I have cleavage and surprisingly never had cleavage before....is that a silver lining I see???  This was never about boobs, but I do see a benefit.  Before the PS did the fill he made sure to ask how I handled the 100cc last week.  When I said no problem, he asked if I was ok doing 100 again?  He said that he doesn't mind if it is 50cc every week or 50cc every other week (like one of his other patients).  He said it is whatever we are comfortable with.  As for restrictions, he lifted them slightly---said I could chip and putt this week----but too soon for a full swing!  I feel good; the iron must be getting my energy level up. 

CinD and Kat, The onc is recommending Arimidex in my situation because I am postmenopausal.  I just can't wait to have hot flashes again.  They were so much fun!!!!  And we, too, are worried about the bone density thing as when one loses natural estrogen via menopause that is one of the issues----why I chose HRT (w/ a very low dose of estrogen).  But ONC says they will give something to counteract that. 

I have begun to realize this is all about action, reaction, and counter-action.  We're going to give you this - which will kill all the bad stuff (oh, and by the way, it will kill the good stuff, too, so we are going to give you this other thing, which will cause this third thing, so here's an Rx for that!!

Sun is shining....off to do more research,

Love you Sisters!!!!!

ps...Marianne...chipping and putting!  You go girl!

Kat and Donna - I will pray for low scores tomorrow.

Lola - Are you ok?  How did it go on Wednesday?

Robin - I love the timing of your latest gift.  You've had a hard week, and it was a good time to get that extra little support.

Marianne - congrats on the second fill going smoothly and for the new found cleavage    You are right, this is not about getting new boobs, but you have to look for that siilver lining anywhere you can find it

I did absolutely nothing today.  My PA told me to quit overdoing so that my fluid would not build so quickly.  I told her I wasn't, but after thinking about it some, I guess I was a little.  The fluid in my abdomen is causing a lot of pressure, but fortunately no pain.  I am hoping to hear from them tomorrow as to when my appt will be.

Strength and Courage Ladies !

I hope everyone is able to have a great nights sleep.

Sally

Regina,

Hang in there honey.  We know what it's like, but are here to tell you, it is going to get better.  Crying washes out the soul....so go ahead.  There is lots to cry about.  Let the drains do their work.  We all wanted them out right away.  I had 3 and only 2 came out after a week.  It is discouraging, but remember the longer the drains are in the better....you don't want that drain out too early --- the fluid will go where it's not supposed to.  Keep your eye on the target.....sleep will be an issue for a while.  Get it when you can.  Naps are good.  Pillows are great.  Try benedryl.  Be patient with yourself.  I am three weeks out from surgery and feeling much better.....you will too!

Marianne

Sending hugs, prayers, and encouragement.



It is so hard: making decisions, unknowns, and all the emotions.



Somehow to live for this day -- while continuing to have dreams and hopes for the future. Accepting the ups & downs as a temporary challenge.... all while reaching out to others. (Please remind me during my next crash of my wisdom. LOL)



We are here for each other.



Strength and courage.

Strength and courage.

Strength and courage.



xx00xx00xx00xx

Burley -- check the main page of breastcancer.org.  They have a great area that walks you through your results.  "Infiltrating ductal carcinoma in both breasts, .08cm left, 1.8cm right, Grade 3, T1b N0 left, T1c N0 right, ER+, PR+, 5 lymph nodes taken and all negative" basically means you had two tumors, one in each breast.  They 'stage' the tumors based on their size, so you are about a 1 or 2.  the grade has to do with how many dead cancer cells are in the tumor, which means it is growing and spreading.  ER+ is 'good' as it means it can be treated by turning off your estrogen.  One thing you will want to find out is if you are HER2 + or -.  That will determine how aggressively they treat your cancer.

For those of you waiting your oncotypes, best of luck.  Unfortunately being HER2+++ means chemo, as it signals a more aggressive type of cancer and they want to be sure there are no random cells lurking about.  So 6 sessions of 3 chemicals, then continue for one year with Herceptin to be sure those HER2 receptors get kicked in the butt.  Then if my period really is gone (I'm pre-menopausal), I will do some other type of hormonal treatment.  If my period comes back, I get to do Tamoxifen and do those wonderful hot flashes TWICE (once with chemo and then again with Tamoxifen).  Yippee.

The weather here in the Seattle area has been gorgeous.  We headed up north to another beach today and it was wonderful and almost 60 -- probably warmer than Florida, huh Faith?

Morning girls....something random to share here...

Goose Bumps!

Oh my goodness....I watched Sex and The City last night (for about the 3rd time in the last 3 weeks) and I always get goosebumps...and it is the weirdest feeling ever!  It goes over my foobs like a quiver and then the incision lines tingle.  WILD. 

Not the same goose bumps as before but not objectionable either...and dare I say, kind of nice? 

Here's to a day of new discoveries!
Have a great one all!
Kat

Good Morning JanGals, Thanks for all the great post. I really appreciate all of you. !

 But I have a ? for any of you that had drain tubes after surgery. The Surgeon took 1 out yesterday ,left  the other cause it was 50cc -(24hrs) & then this Morning I Got 70cc, 20cc more than yesterday. Is that normal? I wondering if it because  he took the other one out ?

 Thanks for letting be vent!

Hugs

Gina

Here's a picture from yesterday's sunrise here on the Atlantic.

I was wearing my winter coat and gloves -- as it was just above freezing at the time: seriously!!

They are predicting we inch into the 60's today. Florida??

Donna, I am sorry you fell into the middle.  Hopefully, you oncologist will be able to give you some more info for this decision. 

Never Surrender!

oh debbie your killing us...what a sight.  i guess i shouldn't complain too much as our winter is mild this year, but oh to be elsewhere!  although this mornings sunrise over the lake could rival your picture, but it is cooler here.

prayers for you gals with the toughest decisions to make.  i guess i feel somewhat lucky that things were spinning for me & there wasn't much choice, although i am fighting to not have more surgery.  just have such a horror of lymphedema.....ugh

has anyone heard anything from becky lately? 

i am sooooo glad i got the port in after my first treatment!!!  it is so sore, the thought of them accessing it right now makes me ill.  but it should be healed enough by next wed...and i do have these lovely meds...  for such an anti pill person, am i turning into a junky???

hubby is getting me out of the house today or tomorrow for an rv show...such a thrill to not be going to a clinic.

kat---sex & the city huh,  never watched that...maybe should check it out...would be nice to have a tickle instead of a hot flash for a change!!

tata

Frosty-thank you for the hint.  I will check the main page about typing my diagnosis.

Grdnslve-I am with you on the port!  Mine is horribly sore-I think mainly because I'm supposed to be wearing a sports bra 24/7, and it's super tight across the port site.  The scar is fine-ugly, but fine.  I had my first treatment using the port already and it hurt when they accessed it, but it was fine otherwise.  I think part of the problem is also because I'm thin, and where my port is seems to just be skin-the skin is stretched so tight across it, the 3 points are bright red and a little scaly.  ugh.

Faithandfifty-I am so jealous of that gorgeous picture!  That would inspire me to actually get out of the house each day instead of slumming around in my PJ's.  The weather is gorgeous here in AZ, but I'm also supposed to stay out of the sun because of the chemo, so...

I feel the pain of those of you deciding on whether or not to have chemo.  For me, it was a no-brainer.  Probably because I chose to view it that way.  I put my faith and trust in my surgeon and oncologist, and went with what they recommended.  I saw the percentages, and chose the most aggressive route immediately-I don't even remember what the percentages were now.  I just know I want to take every possible step, regardless of the side effects, to have this completely wiped out.  So I have 8 rounds of ACT; 4 of Adriamycin and Cytoxan, then 4 of Taxotere, then 5 years of Tamoxifen.  Expecting to lose my hair next week, if what everyone says is true.  I had my period last week (pre-menopausal at age 39), but hoping it may be my last!  Bonus!

Kim

Hi Kim!  I also had my period last week and wonder if it will be the last. It was one week after my first chemo, and I had been wondering what would happen about periods. I'm 49, and my ovaries seem to be fighting to the bitter end. The onc says the chemo will throw me into menopause, but knowing my luck, that's the one thing that won't go!  The hair loss thing is strange. It's been two weeks to the day of my first chemo, and so far it's hanging in there (no pun intended). My neighbors are on a "hair watch", though. The husband saw me in the backyard with a hat, mentioned it to the wife, and they were upset thinking it was due to the chemo. Actually, it was so dang cold here in supposedly sunny Florida, that I donned a hat just to keep warm.

Have a good one!

Cindy