MIDDLE-AGED WOMEN 40-60ish

Loral

Elimar..thanks for the link, good site.

ndgrrl

I was diagnosed at age 44 and my surgeon kept saying I would most likely have chemo as he said the oncologist would throw the book at me because of my age. I really think he may have as the oncologist- first time I met him- was telling me about what chemo I would have and wanted me to be in a clinical trial- so I asked about the Onco DX test and he said- OH U want that?   I said yes.

It came back with a score of 18 so he said your fine - no chemo- her is a prescription for Tamoxifen and basically left.

I have since changed oncologists for a 2nd opinion and he also says I do not need chemo. Which really put me at ease.

I am so happy for the Oncho test!!!!!!!!!!!!

marlegal

thanks Eli. Nodes clean thank God. I think she is more of an information gatherer than a poster at this point.

Ulur, how long have you been on AI's? Have tou tried more than one? 

elimar86861

ndgrrl,  Well, you bring up an interesting point...whether the Onco trumps age in the chemo decision, or vice versa.  In your case, the doc did defer to your (borderline intermediate) Onco score, and does not seem to have made any special dispensation for your "young" age.

But then, I think of what SchoolC wrote, that the study group for Onco scoring was predominantly older, so do the scores translate down to the younger women as accurately or not?  Tricky, tricky.

ndgrrl

I had a 2nd opinion just to make sure that I didn't for sure need chemo. I swear its all a big guessing game at times.

Right now the new oncologist asked me to find out what type of stomach cancer my older sister passed away from at age 44.  he said there is a genetic link between some stomach cancers and some breast cancers so I was able to get her records- sent them to him and he called me into his office to tell me she had the type that is genetically linked to breast cancer- So now I am required to have further genetic tests- I already had the Braca tests done which I am negative but this is additional quite new testing-- If I am positive for that gene I will be watched very closely for not only stomach cancer but other cancers as well- its all SCAREY!!!

elimar86861

ndgrrl, Let us know how the test turns out for you.  I didn't know of a link between some B/C and some stomach cancers.  Looks like B/C could turn out more genetic all the time (as discoveries keep being made.)

macatacmv

eli and ndgirl, the geneticist told me that would save my blood and test as more tests came up. I hear this is the future of cancer tx, don't even call it a "kind" of cancer just treat it genetically. We are all helping the research. (yay!?) 

I am beat! Today was the reopening of the shop. Everything hurts, hands, feet, my fingernails are dirty and I smell like machine thinner. We only had one customer, but it was raining hard most of the day. There is plenty of work to do, getting the machines working smoothly, organizing and cleaning. I got the credit card processor set up and my desk area more organized. I am going to have to schedule in a nap tomorrow. 

Everyone is excited, except for me I think I might be crazy.

Anonymous

ndgrrl, sometimes I think it's scarier when we DON'T know. At least this way, they'll be keeping on top of things, and hopefully, you'll be fine each time! I love hearing, "You're fine for another 6 months/year"

luvmygoats

I was recruited years ago as part of the Nurses Health Study. Somewhere my blood (or parts of it) is banked as part of that study. When I filled out the last year's survey was notified they may ask for a records release for the BC. Hope that my contribution will help somehow.

Rdrunner

ndgrrl.. the link is to due with loss of e-cadherin expression. This is specific to lobular breast cancer. There is a gene that can be responsible and it causes a rare stomach cancer, that is diffuse stomach cancer. I have lobular and my grandmother had stomach cancer and breast cancer.. the genetic counsellor said that if i had that gene defect we would be seeing alot more stomach cancer in my family.

its really good they are being careful though..

ndgrrl

Rdrunner-were you ever tested for the genetic link?  

       My sister did have diffuse stomach cancer diagnosed at age 41 and she passed 6 days after her 44th Bday.  My grandfather also had stomach cancer and one of his daughters and possibly two had lobular breast cancer. I age 44 myself along with a  45 yr old cousin, a 33 yr old  niece and my 60 yr old sister were all diagnosed with ductal breast cancer this past year.

  Even though I have ductal breast cancer he feels I should be tested anyway. I got an appointment on January 23rd. The genetic councellor was going to consult with the Mayo Clinic in Rodchester MN to see what all had to be done as its something they have not done at the Cancer Center I go to prior. Will be seeing what my insurance says about the whole thing.

Waiting is so hard, and its really scary!! 

elimar86861

Welcome, Rdrunner!  That is interesting to know about the ILC connection.  I am following ndgrrl's story and I really am in suspense now about her test results since she had IDC.  For that reason, I hope her results prove negative.  Then again, many of with a family history could have come genetic component that they just haven't discovered yet.

marlegal

It's so good to have this vehicle of sharing info. I know that personally I've learned more from my sistas here than anywhere else/ other sources of information. I'm so grateful for everyone who shares their stories.

Dianarose

Hello everyone, I have missed you all. Things have been crazy for months. I go on and read sometimes, but either I am so tired I go to bed or not home long enough to wrote anything. I am not sure if I posted after I got my nips tattooed or not. They came out amazing. 3-d and they look so real. I feel like a girl again.  Back in November future hubby got very ill. He had a very high fever and passed out on me. He spent that week in the hospital. They even brought in the CDC and they never did figure out what he had only what he didn't have. We have been making all the arrangements for the wedding. It started out small but now is turning out to be big. I love my dress. It makes me feel like a princess. The wedding is February 16th, so it is getting close. 

We went to NC to see my daughter for a week.it was great. I am going to send this post and continue with another one. Last time I lost everything I typed.

Dianarose

ok' I had to take some clothing off as well. These dam hot flashes are doing me in. 

My sweet daughter  arranged a private horse drawn carriage ride in historic Wilmington on New Year's Eve. It was romantic and beautiful. 

I have the shop up for sale. We want to do some traveling and I am just plain tired. Doc did the A13 test and it was high so she has doubled my Metformin. It does a number on my stomach. 

Welcome to all you new ladies and sorry to see you are here..

Hope everyone is doing well. Going to PA this weekend to meet Paul's family. Will try to catch up on all the posts when I get back. Love ya ladies

elimar86861

Well, hello, Dianarose!  Can we all be virtual bridesmaids?

Although I am sorry to hear that the Queen Of Tarts has closed its doors, I am so very happy to hear that you and soon to be husband have plans to travel and just enjoy each other, without any exhausting work taking away from that.  We have missed you here.

marlegal

Diana, I echo Eli's comments.

Where in PA will you be??? 

desalonde

Hi, Just noticed this forum. I am 59 diagnosed after abnormal annual mammogram in 3 months ago; its was stage 1 , grade 2 and no palpable nodes and RI negative for other lesions so I went for "breast conserving" lumpectomy. However now I am second guessing myself. I am in 2nd week of rads with a very insensitive RO.... worried about radiation on my upper arm muscle and axilla( nodes were negative) but RO says that's unavoidable to get in the breast tissue close to underarm and so that extra area is like collateral damage as is part of my lung and rib cage which are exposed to "scatter" . I have read in other boards and articles in med literature about late occurring side effects on arm/shoulder range and strength and I am scared because I am right handed/Rt arm dominant. and because I am an active kayaker and rower ( before my diagnosis anyway). He said there's no guarantees but he hasn't seen any. He also says if I am unhappy with the results on my breast, "you can always still get a mastectomy"..... yet the plastics doc told me that basically he has very few cosmetically equivalent options to reconstruct irradiated tissue...

I am so scared and confused.

Has anyone with prior rads years ago have any experience to share?

Thanks

marlegal

desalonde, welcome...glad you found this thread. Now - exhale! While we're all different, I had rads on my dominant right side, including axilla area, and I have full use/range, etc. Good luck hon.

funthing42

Hi

My younger sister was Dx with DCIS in 2008. Sister carries a Ovarian CA gene and has had precancerous polyps removed from her colon.

2009 I was Dx with invasive DC. In 2013 Dec.  BC is back but I'm Her 2 now.

My grandmother had stomach CA.

Im Braca negative. 

My doctor has asked if I've had the BART test. 

I'm not sure if I should get rid of ovaries now they have been shut down due to the fact I was unable metabolize Tamoxifen.

Anyways it makes me feel unless there is a way to switch off DNA defects. Chemo will be my best friend. Thinking of my grandchildren which I do not have yet. Trying to stay positive Spinning my wheels. 

desalonde

Marlegal, Thanks for your reply. I am trying to stay positive. Staying busy helps. I am so happy to have my job but also grateful I can work from home ( telecommuter) so I am not forced to put on a happy face when I am sad.

I appreciate your encouragement and hope you also find comfort here.

Desalonde

funthing42

Hi

4 years ago. I Kayak no problems.

I plan to after b/l Mx as well no recon planed maybe later.

desalonde

Thanks funthing42 for your reply..... so why a bl mastectomy if you had rads 4 yrs ago? Did you have a recurrence?

funthing42

Yes Dec 2013 still stage 1. Same breast I cannot have more radiation. 

Breast are fibrous.

Staying up beat.

Momine

Desalonde, I had lots of chemo, BMX with 22 nodes out and massive rads. You can get inflammation in the shoulder, what is called "frozen shoulder." However, if you are active and exercise, this is much less likely to be a problem. I did have the beginnings of it a few times in the last 2 years, but each time, I just stepped up my stretches and shoulder rolls and kept lifting weights. After a few weeks it passed without developing into a serious problem. In Danish we say "don't ask for an advance on sorrows." 

barbe1958

Less than 10% of all breast cancer is hereditary. That's a very, very small percentage.....

elimar86861

desalonde, welcome!  You can see my Dx below this post, and it was similar to yours.  I was wondering where your tumor was located?  Mine was in the 6:00 position and I have to say that my big rectangle of whole breast radiation never did get all the way up into my armpit.  It did cover the area where they took out the sentinel nodes, but because they were clear the rads went no further up or over.  Maybe for that reason, I did not have frozen shoulder, cording, or lymphedema, I don't know, but all I had was a tightening in the area probably due to scar tissue.  By tightening, I don't mean anything that limited activity, but when I did (and still do) my stretches (hanging from a doorframe) I can feel my right side is tighter than the left.  About 13% of my lung was in the rads field.  and it got off mostly unharmed (changes were not noticeable on the standard res. chest x-ray.)  I'm not short of breath.  My treatment side ribs were sore to the touch for 2-3 years, but now seem like the other side.  They never bothered me during regular activities.  I can't say what long lasting effect the rads will have on me, but in the short term I have recovered fairly well and am not limited in what I do.  Don't get me wrong, I still hate them and see the whole procedure as barbaric and am waiting impatiently for something better to come along and take its place.  

Just like I am waiting for a cure.  

Now, on to your statement:  He also says if I am unhappy with the results on my breast, "you can always still get a mastectomy"

My first thought was, if you are unhappy with having a snarky, smart-ass RO, you can always still get a different one!  WHAT A JERK!!!!  If there are some others in the practice group, maybe a switch is in order.  Just because one in the group throws off comments like that does not mean the others will be as untactful, and with your records right there, I don't think it would too difficult to switch him out for a more decent colleague.  Can you really take that insensitivity another 4 & 1/2 weeks?

furthing42, welcome to you also!   With those close relatives having possibly related cancers, it does make you think that there could well be some genetic factor at work.  Is your current B/C a recurrence from the 2009 IDC, or a new primary cancer?  Is it one or both breasts?  Are you taking an AI now?

barsco1963

Welcome desalonde and funthing - glad that you came across this great bunch of gals. Always someone here to answer a question, encourage and support when things get tough, listen when you need to vent and celebrate when things are going well.

staynsane

Great discussion points, ladies.  I don't have much to add because I have not had rads, but I am reading with interest...

Dianarose- Great to read your updates.  So happy for you that you have found a partner that's a keeper and that your wedding is right around the corner!  You have been through so much... I often wondered how you could possible start the new time-intensive business and handle medical issues while kindling a romance!  You must be relieved that the decision to sell your bakery has been made.  So great to hear that you feel like a princess in your dress; we all deserve to feel that way, especially after what we have been through.

Barsco- Love your new avatar.  Is that you?  My parents divorced when I was four, and I never saw many pictures of myself as a little girl.  Last Christmas my Dad sent me a CD of pics from 1955 through 1970, including many taken in Japan when I was born.  I cried seeing them!  I felt that my Dad was pretty much absent during my little girl years, yet HE was the one who apparently took pictures every time I visited.  Damn was I cute!  I thought I was an ugly-duckling when I was young, but now I have proof that that wasn't the case!  Isn't it amazing how seemingly small things can touch our hearts?  Boy am I getting more emotional the older I get...

barsco1963

DianaRose - so good to hear from you and that everything is going well. Sad to hear that you had to sell the bakery. I guess our dreams can change at any time huh? I bet you are excited as you look forward to a wedding and many years together with your new love. I am sure I can speak for all of us when I say we couldn't be happier for you and all the good that is happening.

SnS - ya that's me when I was a little gaffer. Being the 5th of 8 kids, I find that there isn't a lot of pics of me when I was little. Funny how the camera seems to become less active as the family becomes more active - lol. How great that your Dad sent you a CD of pics when you were younger. Must have been wonderful to see them and realize that your Dad was recording your years as you grew!