MIDDLE-AGED WOMEN 40-60ish

elimar86861

SchoolC,  Yes, I was wondering if you had the Oncotype test, but good point about the study group the results came from.  I know that chemo is often given to "younger" women, under 50, but I thought that was mainly because more of them were HER2+.  With a mastectomy, I think the chance of recurrence is under 5%, so with chemo on top of that, I think you must have lowered your risk even more.

Good Luck with the PET scan.  Let us know how that goes.  They always have to check for the worst, but the back weakness may very easily be due to the muscle wasting that is caused by the chemo, so don't worry too much about the PET.  (I think the worst part of that scan is the sitting still after they give you the pre-scan drink.  As if it weren't boring enough!!!)

macatacmv

school, let yourself rest and recoup some energy. eat well as your taste buds come back to life.

I have the painters here again, they have taken over my office, so the internet has been down. So I am just catching up. 

Friend just came over so gotta go for now. back later

edited to add I thought I posted this hours ago. but I forgot to push submit. lol

Sherryc

Elimar you make me laugh, I love coming here.    Yes I was in bed with the crud not your husband. LOL

barbe1958

elimar, the recurrence rate for masts may be lower but the mortality rate is the same!! Rather than a recurrence in the breast area, we would get a metastasis somewhere else in our body, just the same as anyone else. A recurrence isn't considered mets as it's "local" and they figure it's just dormant cells that got activated. So AFTER my breasts were taken off I learned this.....sigh.

Anonymous

school counselor, I can relate! Was dx'ed 1st time (1996) with DCIS/IDC, triple neg, chemo with CMF. Told 96% chance of non-reoccurrence. I wonder what oncotyping would have shown if they had it back then. 

elimar86861

Barbe, You are right...I was only thinking about the stats for local recurrence.  Now that I think of it, the saying is lumpectomy + rads is equal to mastectomy, so in having that, I think I brought my chance of recurrence down to 5%, but that would only refer to local recurrence, wouldn't it?  I did have the Onco, and that listed my chance of distant recurrence (mets) at 12%.  Were you ever told what your chances were for distant metastasis?  Did you have any chemo?

 

barbe1958

I was never told my chances as my surgeon had emergency heart surgery! When I finally saw an onc 9 months after my masts she said "You really fell between the cracks, didn't you?" I got no rads (which I was trying to avoid with my masts as my tumour was 6 o'clock on my left side and too close to my heart and lung) and no chemo or AI. My onc said there was no point starting something so far out. So I just sit here waiting..... I even see her more often now that I'm 5 years out as my ER+ cancer is slow growing and it's now that I'd recur or get mets. Even my surgeon had said to "Save the big guns until next time!"

So apparently, those of us in lower stages have a 30% chance of recurrence as we weren't treated as aggressively as those in higher grades!! Problem is, they don't know which ones of us will recur and which won't!!! I think my risk might be higher with nothing but surgery, but again, who knows???

elimar86861

Question for you Barbe...I know that you don't put big celebration into the 5-year mark (and with ER+ it isn't the finish line that it gets made out to be, but congrats on reaching that point as of last Nov.) so I am curious as to when YOU might start to feel that your cancer is gone for good?  Putting you on the spot here, but only because I ask myself the same question (and my answer is that I will feel pretty safe if I can get to 10 years, even tho' I've heard of recurrences coming after that for us ER+ girls.)

One thing that is happening for me is that, because of my second (CRC) cancer, I'm destined to be CTed somewhat regularly over the next 3-5 years, so if B/C decided to cause any organ problems I think/hope it would be spotted.  I mean those scans aren't cheap, so I will definitely pose the question, "Hey, while you are looking, see anything that looks like B/C mets in there?"  When that monitoring is over, I should be about 9 years out from B/C, and poised on the brink of pushing two cancers into my past.  Can I actually be badass enough (read: LUCKY enough) for that to happen?  Time will tell.

Meanwhile, as I seem to be moving past cancer myself (one step at a time,) it is still looming in my life because of my best friend going Stage IV this summer.  She got rads on a couple bone mets, then went on Tamox.  Her tumor markers came down a few hundred points and things were looking tolerable for long term maintenance, but no!  Instead, she got leg pain, which turned out to be a superficial clot in the calf (phlebitis) and when they did the US to assess that, they found an asymptomatic DVT (deep vein thrombosis) clot in her groin.  The warfarin was quick to follow.

So, in a phone call we had as that all was going down, I pointedly asked, "Did they take you off the Tamox.?"  Her reply, "No. Not yet anyway."  Well, her PCP was handling the clot situation, so I told her to call her MO directly and ask about whether she should still be taking the Tamox.  She did, and that answer was to come off of it immediately.  Of course I was MAD after that phone call,  I mean, if that was one of the first things to cross my mind, don't you think the PCP should have addressed it?  Anyway, because this is my oldest and best friend, I can't just listen impartially to these things.  It is a little like me having a recurrence by proxy.

That brings me to another question for all you readers of the many threads:  Have you ever heard of someone getting a clot because of Tamox., going off of it, and then EVER coming back on it when the clot gets resolved?  I know my friend is on the blood thinner for 6 mos., and something besides Tamox. is going to be used on her BUT does that mean she can never use the Tamox. again?  The the Tamox. had been nice and effective, judging by her marker numbers.  Have you heard of anyone ever going back on Tamox. after something like this?

SchoolCounselor

I actually asked for the oncotype as a reference point. It came back as a 12. Which meant an 8% chance of reoccurrence. But as I said it would not have mattered anyway since I was going to do chemo. 3 years ago I had ADH and met with the MO about tamoxiphen. We decided that given my risk of 1.87 chance of developing BC in the next 5 years I would not take it.  Then bam, here I am, for me 1% is a huge number. 

I asked a girlfriend who is 5 years out, when foes the fear of it coming back go away. She said, it doesn't, you just get used to living life to the fullest everyday. 

elimar86861

SchoolC, I know you are planning on doing the Tamoxifen NOW, so I just want to point out that the Onco score you get does assume that you will be on Tamox. (or an AI which will give you approximately the same score.)  If you were to skip Tamox. now, that recurrence number would raise up.  Getting an Onco score of 12 indicates that Tamox. should be fairly effective for you but not too many people who get a 12 do the chemo.  Chemo is thought to benefit the ones who score around 18-20 range and above.  While it could have some benefit for you, generally, the risks are heavier than the benefits at that point.  But don't mind me, because you have done the chemo already and there is only moving forward now.

luvmygoats

Elimar - Chrissy runs a question about Stage IV - I think it is actually for those thinking Stage IV is approaching rapidly/worried. Wondered if your Tamox. question is appropriate there? Not many places to ask Stage IV questions without intruding. I think there is one for caregivers too but again may not be appropriate. I'll look thru as a surf around today and see if there is something. Don't think Chrissy would mind you asking. You can PM her even. Barsco replies on there a lot too. Maybe she has an idea where to ask.

SchoolCounselor

elimar. My MO and I discussed those numbers. As did the second opinion I has at memorial Sloane Kettering. We all however agreed that  in my case, due to my age and race, the benefits of chemo would outweigh the risks for me. I am also aware of a study. Tailorx, I believe, that is reassessing how we look at the numbers in the intermediate range. I find it fascinating that there are so many ways to treat us as individual patients and reassuring at the same time. 

elimar86861

SchoolC, Sorry, I forgot that those numbers are not as meaningful to you because of the study focusing mainly on Caucasians.  I am ignorant as to how the stats change for Afro-American or Asian women.  You definitely are lucky to receive a more individualized approach and be able to go to a top notch facility such as MSK.  Beneath my pink doggy avatar, lurks a White woman, and I have to say that maybe because I fall in the predominant race of the study groups, I have often felt like I was not very individualized...just another B/C woman to hop on the treatment hamster wheel and run with it.  I'm not saying my docs were uncaring, but I did feel that the charts and projections that they hauled out for me were the ones they gave to all (most all) of the others.  The rads schedule they gave me was the usual one they gave to most other women, etc.  I really had to struggle to be taken as an individual.

luv, Good idea about chrissyb; or I will have to look for something appropriate among the Stage IV threads. 

Jeannie57

I had an Oncotype of 13 but because I had big cancer in three nodes, I went with "chemo-lite," as my MO called it. It was CMF but I had infusions at a lower dose weekly except for the C which I took every day. I didn't lose the hair on my head but every where else. I do occasionally wonder if I'll get leukemia from it...

luvmygoats

Seeing Jeannie (waving Hi) reminds me where have we lost Dianarose? Are you busy making wedding plans?

Jeannie57

Ha! I bet she is! I haven't heard a peep from her.

Loral

barbe1958....I chose no radiation too, 6-7 o clock left breast by heart, BS said she got it all, I believe she did...No chemo either, and now taking a break from Tamoxifen. I'm 1961.

I'll hope and pray for you and you can hope and pray for me..........

marlegal

My 45 yr old niece was dx'd rectntly. Bilat mast. Saw two diff med oncs and both recommended chemo due to her 'youth'. Two separate tumors, dcis, no node involvement. pr/er+ her-   I didn't know decisions were made at 45 being young. She's handling amazingly well. She did join bco right away and loves it. Of course, I hate that she needs it, but.....

SchoolC, welcome to this thread. Stick around for our parties...we do a good job there too!

Love and hugs buds. Friday is on its way!

barbe1958

loral, I'm certainly praying for us both!!! schoolc, isn't it more common for African Amercians to be triple negative? It seems you have dodged THAT bullet, thank God!! Also, note that a couple of these gals have Grade 2 cancer. That is a faster growing cancer. Chemo only works on fast growing cancer (grade 3 preferred, but...) and will not work on slow growing cancer. My cancer is slow growing. I said years ago I'd rather be a stage 3 grade 1 than a stage 1 grade 3 and I've proved myself right as I've read the posts all these years! Remember, these stats are ONLY for treatment, not MORTALITY, which so many people count on.

There is no cure for breast cancer. Thus, the "Run for The Cure" events that take place all over the world. When will I feel safe? Probably never, but the fear is more cautionary now, rather than reactive. I have had other more dangerous health events occur after my cancer diagnosis, so it all falls into perspective.

ulurudog

I'm 62 but still juggling full time work, homelife, and poisoning my body with Aromatase Inhibitors.  I'm trying to locate discussion by women who have said "enough" when it comes to taking AIs.  I know they are out there, because the side-effect information on AIs all state "many women are so badly effected that they quit taking the drug."  I want to know what happens to them.  I've finally had enough.  I've been through all of the AIs once, sometimes twice, but will not risk the deep-vein thrombosis of Tamoxifen.   I want my life back, even if it foreshortened, because what I am going through on AIs is not life.  Thanks for listening.  Marilyn

Momine

Marilyn, a lot of women do quit. Often they do not tell their doctors, so it may be a bit hard to get accurate stats. However, it obviously depends on your stage etc. If you go to cancer math, you can plug your info into the treatment calculator and check what the difference is with and without the AI. If your QOL is severely affected and the advantage is slight anyway, if may well make sense for you to quit. Have you discussed it with your onc at all?

elimar86861

ulurudog, welcome!  Since you haven't filled in your Dx information yet, I'm not sure how long you have been on the AIs or how aggressive your cancer is, so I can't comment specifically.  I will say that ALL the treatments carry the risk vs. benefit factor.  If we get the honest info. on that, and know what quality of life we are seeking, we can make the best decisions for ourselves.  Look in the forum "Hormonals--Before, During and After" and you should find some ladies like yourself who have come off the AIs due to the side effects.

mar, Sorry to hear your niece has had to join our ranks.  Did she have any in her nodes?  How is she doing on the chemo?  At that age, does that mean she might show up on this thread one of these days?

barsco1963

marlegal - sorry that your niece is having to deal with all of the crap that goes with this crummy disease. Glad that she has you for support and that you have directed her to bco.

Hello to SchoolC and ulurudog - lots of women here to support, encourage and advise.

Anonymous

Marlegal, I was told I was young at 41 to get 1st bc DX and have been told that several times since 

Elimar, great thread header!

SchoolCounselor

45 and under is considered young.

mstrouble16

I was 47 and peri-menopausal, the first time my onc and breast surgeon said "your young" I asked them if they had the right chart. 

Anonymous

Hey, I'll take young any day! Went to the movies last weekend, guy selling tickets asked if I wanted a senior one. Huh? Before I told him, NOT, I took the discounted ticket along with my bruised ego!  

SchoolCounselor

LOL trouble!!!!!

I'm sorry 2nd!

Anonymous

thanks, School Counselor, after I got over the sting, I saved a dollar!

What's even more confusing, I had a facial a month or so ago, and the aesthetician said I looked 45. Hard to believe I aged that quickly.

elimar86861

See, like it or not, this so called "middle age" label actually fits.  When they call us young, we laugh or are a little dumbstruck; but not fair to call us old either.  Most of us ('cept you 2TA cannot) get the senior discount yet.  

------------------------

I've been wanting to share an interesting website.  Read the "About" section, then open up the "Lists" segment and read what you might be interested in. 

Choosing Wisely

The idea is supposed to be to provide info. that can raise talking points between patient and doctor.