Alone - recent double mastectomy

TAG- I am glad you made it to the support group?  Dare I guess you found some help? I am also glad you are sleeping better- That makes a big difference.  So what if you needed a little help- getting sleep in important enough to do that!  I hope your daughter  sees the wonderful person whe and your grandchildren are missing and comes around.  I will continue to pray for you, You continue to look for help - It will come.  Please take care.

Good morning!

Hi! 

I wish I was up in your neck of the woods, I would make you some food in a heart beat!!! I live in MA, and like you, LOVE Cape Cod, so, once the kids are gone, will probably be heading there to live. I need to think about the food issue... that is a big one for helping you heal, I wonder if a local church outreach would be able to help you.... even if you don't belong... I am not sure how many churches are in your area, how welcoming they are, but I know if my church learned about you and your situation and how you are on your own, our outreach would be there to help you in a heart beat... is there a First Congregational Church locally? 

I don't know about tamoxafin, but I just was diagnosed with dcis, long story short, just had lumpectomy and at the end of February or early March I am going for the unilateral mastectomy... Just like you, my dcis is er+ and pr+. So from what I hear, tamox is good for preventing recurrence of estrogen positive dcis, but not sure how it applies when a double mastectomy is involved. someone else on the boards will probably have insight on that!

 Hugs to you!!!

Hope you have a good night sleep tonight   

TAG

I have to wonder if there are other issues coming in to play with your daughter.  Forgive me and this is in no way meant to be insulting, but what springs to mind is drugs.  Alot of users will justify there actions ie locking the door when you come, being angry at you for no apparant reason etc, all in an effort to hide substance abuse.  A very old friend of mine (totally clean now) came clean to us all years ago that she had been doing crack cocaine BIG TIME.  None of us knew AT all and I for one was very shocked.  We just figured she was busy with the kids and the man.  She even went on to tell us that one day when someone dropped by in the middle of them getting high that they locked the door and pretended they weren't home.  This was mainly due to paranoia and the fear of being found out.  Just one example.  I hope that's not the case though.

I'm really glad you were able to attend a support group, makes such a difference to know you're not alone in this.

Theyaregone- just found this thread. I am glad that others found it sooner. One thing that I have learned from bc.org is that we never have to be alone. There is always someone here to understand and support us. I am glad you are able to get around a bit more now.

TAG, check with your oncologist's office. The one I went to in Portland had a social worker call me shortly after dx to see if I needed anything. I'm fairly sure that's a free service. It's there for precisely people like you who fall through the cracks. Even though you're doing better, use this service if it's offered.

TAG

Big Hugs to you!  It has to be hard with your Daughter but you sound like you are really finding your inner strength.  Only having a UNI with support from others and I admire you for it.  BTW once you get those boobie cami's, it will have a positive affect believe me.  I hated being lopsided and the day I got mine I felt a bit more like myself.  The day prior to that was my first shower after surgery and then the nurse came to remove the drains!! That was a good day!  Those little things meant so, so much!!

An onco test is a test done on the tumor which helps determine your risk of cancer recurrence and whether you would benefit from chemotherapy. I believe the criteria are that you be post-menopausal, have clear nodes, early stage (1 or 2) and estrogen receptor positive. If your onco score is below a certain level, the benefits of chemo do not outweigh the side effects and it would probably not be recommended. If the score is above a certain level, chemo would most probably be recommended as the benefits would strongly outweigh any side effects. If you fall in the middle range, the decision whether or not to have chemo would require some careful consideration between you and your oncologist. Of course, any decision about any part of your treatment is your decision. This is just another tool to help you make an informed decision.

It is a very expensive test ($4000) but is covered by most insurance. It is NOT covered through Tricare, which is what I have, but my supplemental insurance, Marine Corps Association (through CHAMP-VA) does cover it. You'd have to see if your insurance covers it. But the lady I spoke with at Genomic Health (the lab that does the test) did say that they work hard to see that anyone who needs the test can get it.

Jumping on board to give hugs and lots of support to theyaregone.  So glad you found this board and the truely amazing women on it.  ((((hugs)))

Cats 

Hey TheyAre!  I'm so glad that you're up and at 'em.  This is tough as hell with a good support system.  I'm so sorry for all the pain that you are going through.  I just have to say too that it's not about swallowing your pride to ask for some help.  Everybody needs help sometime.  We don't belong to a church, but the neighbor up the block does. Someone from her church brought us a meal each Friday--the days of my chemo.  I'm glad you found the wonderfully supportive community here, but you just never know who in your life may be the one to help.  Let people know, and don't feel embarrassed to accept help.  That was hard for me, but it made a really big difference when I did.  

Hang in there, love.  We're all with you!   

As far as the Oncotype test, just want to add: you do not have to be post menopausal. It is to calculate "Distant" recurrence rate, and can also be done with minimal nodal involvement; one or two or micromets... But, it is just one tool that the MO's use to determine whether or not they advise chemo.

TAG -Please take your temp - if is not normal call your BS (Breast Surgeon- unles your are having reconstruction- then call your PS- Plastic Surgeon)  Tight is not good.  Sloshing- i think there are a couple of people that had that, you will probably hear from them.  HER2 is tested from the breast tissue removed in the BMX. if you are HER2 negative, no problem.  If it is positive or equivacol, they do further testing called the FISH test to determine the result.  ONLY if it is "amplified" is it a problem.  They also test for Estrogen and Progesterone receptors.  If ER and PR positive, it means that you may need further treatment for that - usually an Estrogen blocker.  All of this is from the tissue already sent in from the BMX.  The Tomoxifen is an Estrogen blocker- so you are probably ER+, You can get a copy of your Pathology report if you want.  If the ER test is in, and he didn't mention Her2, you are probaly ok, but sometimes it takes a while for the test results, so next time you talk, ask.  The MO(Medical Oncologist) will call you if it is positive as you will have some decisions to make.  ONCO testing is done to see what "score" you have and if it is high enough, they recommend chemo.  If your MO did not recommend it, then the best Tx (treatment) has already been planned, and they will tell you what to expect.  I hope that this helped.

TAG, maybe call your surgeon in the morning but ask for the last appt of the day. That might help since surgeon can't help if he doesn't see the problem.

Best of luck.

Leah

get some sleep- I hope you feel better.