Lost Confused Scared

SugarGlitter

My husband and I were both laid off in March of this year.  We moved to a small town away from our families and I don't know many people here.  I did all the self exams, I went to all my mamogram appointments, and my doctor, and the mammograms did not discover the lump. I had a double mastectomy, no reconstruction because the surgery was done so poorly. Went through chemo and was on tamoxifen for as long as I could take it (it made me so so sick).   We haven't been able to find work and things have been getting pretty bad financially.   I was happy to be celebrating my four-year cancer free date on September 2, 2009  when I got the news that the hip pain I had been experiencing for about a week was in fact bone mets. Now it seems it's all I can think about.  Never even dawned on me that it could be cancer.  Heck it was just a pain in the hip. I probably walked goofy on my chronicly sprained ankle.  No. They say it is in my shoulder blade and my hip. My oncologist doctor was horrible and I switched.  The new guy is hard to get a hold of. My husband is in denial. He thinks I'm fine and won't talk about it.  My 30-year old is suicidal (and back living at home), which he likes to blame on my health problems.  I don't know anyone else in this situation.  In the last month I've had my ovaries removed, had bone chemo (pamidrinate?), started tamoxifen (again, it makes me sick), did 15 rounds of radiation to both shoulder and hip, and still am trying to nurse the burn the radiation caused, so many doctor appointments, and all of them are more than an hour away, one way. I'm so tired. My hip hurts so much. I can't walk normally anymore.  I don't want to die of this. I don't want to be a big baby about it. I know people out there are much worse than me. I am so mad that this disease hasn't been better handled and that there has not been a cure found.  I think of poor Bette Davis and Ingrid Bergman and Vivian Vance and Linda McCartney (to name a few celebrities) and all the other wonderful women that have died of this stupid horrible disease.  I feel like I have to vent, but I don't have anybody around here to vent to.  I think about dying all the time. I don't know if my treatment is the correct one or if there is a correct one. I don't know if I can call what I've gone through a treatment at all.  I am anxious and afraid to cry. I'm not brave at all.  My husband and son are around the house with me all the time and I'm trying to be so brave for them but I feel so shaky and scared.  I am so sorry to bother people who are obviously much worse off than I am.  Please help me. I feel so alone.

Anonymous

Sugar, having breast cancer forces us to travel a very lonely road.  I am so sorry you are going thru all of this.  I also worry about bone mets and asked my rad onco dr. about pain I have been having in my hip the last week.  BC causes so much worry.  It's horrible to have financial problems while going thu it all.  My husband lost his job last year.  It was really hard.  We always were very financially comfortable, and I was a stay at home mom while my kids grew up.  Health insurance is very expensive now.  Something I never had to worry about when I was younger, suddenly is a major drain on us financially now.  I know how scared you feel.  It comes with this beast disease.  I sometimes feel so overwhelmed with all of the information I need to know just to stay on top of my treatment and this cancer.  Breastcancer.org is the best place to be for me.  The women here are all wonderful and there is so much support with the information.  Yeah there are disagreements and little spats but all in all you're in good place to let out your feelings of fear and frustration.  Much Hugs to you, sugar.

lovemyfamilysomuch

Dear sweet Sugar---I am so sorry you are going through this.  I am glad you reached out to us.  There are many women on these boards who will offer you comfort and support.  I will send all my good wishes out to you for strength as you cope with the beast.  Please keep talking to us, we are here to listen. Please take care of yourself.  In sisterhood, xo

lovinmomma

I do not know the answers to your questions, but htere are many here that have answers. Keep on posting and looking. I knmow that it is hard.

TenderIsOurMight

Dear Sugar,

Like others I truly am saddened by your circumstances. To get a bone mets diagnosis or any type is so hard on the mind. Please join the mets forum should you wish. It's filled with good people like your self.

I don't wish to over step but I do have one question for you. It has to do with the use of Tamoxifen. I'm wondering if you might ask your doctor talked with you about a different hormonal treatment route, called an aromatase inhibitor like Arimidex or Aromasin or Femara? These drugs function in a different manner from Tamoxifen, and since you've had prior exposure to Tamoxifen and now have the bone met, often they are then selected instead. If you have your ovaries in, they could be suppressed sometimes (depending where you are in menopause) or possibly removed. Just a thought if you are menopausal.

One other question is is your oncologist advising a bone biopsy? Many docs and patients like to see a biopsy result if feasible to just check the cancer is still estrogen sensitive and that the HER2 pathway has not been activated (i.e., the biopsy is + for HER2). If it is, then theres another great drug which may benefit you called Herceptin.

Older kids, traumatized by a mom's cancer or a dad's, often are depressed and blame it on the cancer patient herself/himself. I hope he might be able to talk with you more openly, as well as his friends, find a support group or family counseling cancer center. Small communities have the same problems as large ones, so these support groups are around or within distance. I feel for you both and the guilt a mom can have from this issue is tremendous so please look out for yourself.

I'm glad you posted. We'll all try to be helpful to you. 

Tender

TenderIsOurMight

One more important point:

I write my Congressmen (no ladies here) and the White House regularly about the need to focus on job creation. Not a day goes by when I don't think of the ramifications for people not able to find work. It's a demoralizing time just now and we all have that added to our personal and family angst. I write them once a week, focus on jobs, jobs, jobs. They keep people healthy and going in ways far beyond any description I can offer. 

I hope your family gets a break. You're under enough stress and need financial support too. 

Write everyone, write.

Tender

SpunkyGirl

I am so sorry for everything you are going through.  You are right to switch doctors if you are not getting the support and proper treatment.  I am also so sad that you have so many financial and family woes on top of it.  Can you find out if you have a breast cancer support group in your area?  The social worker at the Oncologist's office should know that, and he/she should also be able to point you to foundations that can help you with the financial burden.  That is what they are there for.  I hope they can help you. 

Thinking of you and praying for you
Bobbie

ipursuit

Dear Sugar,

 My heart goes out to you - having to deal with so much and having so little support!  I also do not know the answers to many of your questions, but I can suggest you search on these BC.org boards to find out more info on every thing you have a question about.  I think these boards are the single most helpful source of info around.  Also, you will find some comfort in our shared challenges.  I would think the Stager IV / Mets boards would be the most helpful to you. 

I have spent many hours reading these boards and not a single moment of that was wasted. 

Secondly I would suggest you reach out to any church or house of faith that may appeal to you.  Faith-based organizations are often particularly strong in rural areas and can be a tremendously helpful.

Here is hoping that you find some glimmers of hope very soon.  ((HUGS)) E

McScared1

I am so sorry that you are going through this. You always have us online for support! Cancer is so hard on family and friends. People are afraid and don't know what to do and they want to do something. Sending you hugs.

mason204

Dear Sugar:

You've come to the right place to vent.  You have support here.

I don't know what I'd do without the ladies here on the boards who are so understanding and helpful. 

Do you have a support group in your area?  Somewhere you can go to get support from others?  I find that once I vent elsewhere, I have the strength to "keep up a brave face" at home.  Your husband is in shock right now and doesn't know how to handle this.  Hopefully, he'll come around in time.  If you meet new friends at a support group, you'll have people you can call when you're feeling down.  Local support groups also have the "dirt" on the good/bad doctors in your area.  As you go forward, they may be able to recommend more reliable resources for you. 

Sending you (((((hugs))))))) also.

Cheryl.

Anonymous

Sugar, you said you had your ovaries removed.  You are "eligible" to go on one of the Aromatase Inhibitors that Tender wrote about.  I was on Arimidex and my onc changed me to Aromasin.  Armidex was obviously no longer working.  I had a biopsy, but now I need to know if the status of the tumor is the same as my original diagnosis.  Also, if one of the Aromatase Inhibitors is a financial problem, there are places that will help you.  We will be happy to help direct you to that info.  I believe there's a place on this site that gives several places for one to apply.

Please let us know how you are doing.

LuAnnH

Sugar, you have been given lots of good advice.  After looking thru the posts I might have missed it but there is a breast and cervical cancer program.  It will pay for all your tx if you don't have insurance.  Someone else might know the proper name of the program but that may be of help to you.

I myself have bone mets, I am three years past my dx with this stage IV so there is hope you can live with this.I'm not sure why you are still on tamoxifen if it makes you so ill.  I understand not wanting to stop a tx that is working but sometimes they take away too much quality of life (QOL) that it is not worth it.  You can take any of the following drugs instead of tamoxifen:  Arimidex, Femara, Aromasin and Faslodex.  Those are other AI's that work similar to tamoxifen and can give you a decent QOL.  I'm sorry your home life is rough right now but you need to start focusing on you and the others will need to take care of themselves.  If you are on an antidepressant I would look into that also.

dlb823

Sugar ~  I'm so sorry that you are where you are right now, but I hope that finding us will give you some of the support you've been missing.

I don't know if it was mentioned above, but I think a Stage IV diagnosis may qualify you for Social Security Disability without any further questions, which could be a huge help to your finances right now.

And here's an incredible list of resources that another BCO gal has put together.  Hopefully, there are one or more agencies or programs in your area that can help you get the treatment you need:

http://bb67.wikispaces.com/

One more thought... Many cancer centers have psychologists or social workers on staff and available as part of our ongoing care.  Someone like this could be beneficial for your entire family to talk to, and they will also know of any programs that can help you.

You will be in my prayers ~      Deanna

Irina

Hi Sugar!!! I see you are from WI. This is web site for you

http://www.ci.mil.wi.us/BreastandCervicalCan23789.htm

For more information about the Well Woman Program in your area, contact your local Well Woman Program coordinating agency (PDF, 26 KB), or the Well Woman Program directly at 1-608-266-8311. 

 I was Dx with stage III in 2004, with stage IV in 2007. I don't have job too. But it still hope.

PRAYERS and (((HUGS)))