Stage IV need help on a decision.

420crew

I have a hole in my c2 at the base of my skull the doctor is trying to find a way to strengthen it. One suggestion is to put a balloon in it. I had chemo yesterday and was told that i am uncurable. because of the bone and lungs being infiltrated. 

I just had a lumpectomy at the beginning of march and then a radical modified mastectomy on the right breast. With the removal of my axillary nodes of 3 out of 22 have cancer and.

I have a wife and a 4 month old and 2.5 month old. I really need someone to add some light. The doctor said he thinks he can control my cancer with chemo but the major problem is my neck.

Any help or suggestions would be appreciated, 

420crew

Thanks for the prayers My biggest fear is for my children to grow up not knowing their dad

I know my wife is strong in faith and will be ok we have a term life insurance plan that will help her but is is small.

We moved across the state for my career and all of our family is at least 3 hours away.

I feel so alone!!

I feel like I could have done something to prevent this.

I am the one working and it is real hard to work when you dont know how much time you have left. It is hard to go there when your children and wife are at home all day. 

ithaca

I also know many people living with Stage IV breast cancer with a good quality of life. This is a link for a brief article that might help:

http://www.crcfl.net/content/view/cancer-as-a-chronic-disease.html 

Know that you aren't alone. There are lots of guys with breast cancer - including me - who are with you in spirit every step of the way.

Bob

Bren-2007

Dear Crew .. a dear friend of mine had mets to his C-spine.  He was greatly helped by posting and reading at the following website.   After clicking on the link, please scroll down the page to the "Cutting Edge" forum.  My friends name was was MREanes and you may find some of his posts to help you.  He and Edge took many of Edge's suggestions to Mike's onc with some success.  Please feel free to ask Edge any questions.  He will get back to you ASAP.  Treatment for male breast cancer can be different than that for women.

http://www.nosurrenderbreastcancersurvivorforum.org/

There is a nother man who posts there with the screen name 1rarebird.

I am so sorry you are going through this.  Sending you love and strength,

Bren

420crew

thanks I will check all of them out My head is in a fog today this is day three out of chemo and I had a dose of newlasta yesterday today I am having the classic bone pain  pretty severe. 

ChocolateLover

420crew, my Dad also had bc and they put him on tamoxifen for 5 yrs. Did they test for hormone receptors on your diagnosis? The tamoxifen helped Dad immensely; he was dx in 2002 and is still going strong.

Larry44

Crew,

You have not said where you are being treated. If I had the situation you have I would head to the nearest NCI Designated Cancer Center for an evaluation and treatment recommendations. My advice is assuming that you are not already being treated at one or at a facility which has a strong relationship with a NCI Designated Cancer Center. The link to the list is at http://cancercenters.cancer.gov, part way down the left hand side of the page. That way you could be sure that you are getting the best treatment for your case.

I will echo what other posters have said. I've met many stage 4 patients in the chat room on this site and many of them live a long time, I heard of one who was still going strong 20 years after the stage 4 diagnosis. Today's treatments are much better than they were even 10 years ago.

chainsawz

420 - the neulasta shot caused me about 6 days of bone pain.....that's why I called it newnasty.  Everyday I took a claritin and an aleve.  The combo does some strange trick to help the pain.  On my bad nites, I took a vicoden but usually the claritin\aleve helped enough.  Hang in there!! 

Bren-2007

Crew .. I contacted Gina at her website nossurenderbreastcancer to be on the lookout for you ... she and Constantine (Edge) can be a huge comfort and help in supplying info so you can make the best decision possible.

Hugs,

Bren

Deirdre1

Crew - it is really important what ChocolatLover and Larry said above.. find out if you are ER+ and start asking if you should be on Tamoxifen..  I know that chemo is rough (my Dad also had bc and ended up living several years after being dx'ed with Stage IV - but the chemo part was very rough) and fortunately my bc was found very early (TG).. It's really time to encourage your wife back into the job front, I know that sounds like a lot and it is but right now you need support so you can take some time off work.  Yes that means the little ones will be in day care or with a supportive family member - but YOU need to be the center of the world right now.  If  you haven't already taken Larry's advice above please please do so..  Now is when you need to react to your situation - don't wait 'til later.. You have a chance to be here for quite a few more years and that's what needs to be put on you "white board" right now..  I'll keep you in my prayers and you are not alone..  I remember my Dad talking to me because he "didn't want to upset your mother" after he passed she really wished he had come to her as a best friend in his darkest hours..  Your wife is stronger than you think and it is now that you need her as your best friend.. Find that friend and together you can find the best treatments for you and PG you will be here for a long time..  Blessings, Deirdre

Mazy1959

Crew I am assuming they want to do a kyphoplasty on ur neck. Its where they insert a balloon and then inject bone cement. It does strengthen it. I had it done last fall on my L5. I still have pain but its alot better. At least now I dont have to worry about it so much. I hope it all works out for u. Hugs, Mazy

Bren-2007

Crew .. My friend Mike also had this procedure ... where they put the cement in the bone to stabilize it. 

Please let us know how you are .. we really care about you.

Bren

1rarebird

Crew--

The best advice I can add to that which has already been offered you by the others posting here is for you to get copies of the pathology reports from the tissues removed during your mastectomy.  Read every word of the reports and have your doctor to explain anything that you do not understand.  Ask follow-up questions here and you'll get answers. 

You'll find much help at the link BinVA gave you.  If your pathology shows that you are Her2 positive, you can find additional information at Her2support.org.

Knowledge is power over this disease and you can add a lot to your comfort level by becoming the best informed on the subject that you can.  It will help ease some of the uncertainty and loneliness your are feeling. 

I am stage one and certainly can't fully identify with you and your stage four diagnosis.  But I did find the more I learned about breast cancer, the more I became convinced that the situation is not hopeless and there are very many things that can be done to improve the outcome.  

Good luck--bird

Bren-2007

Crew .. just checking on you.  Been thinking about you and hope you're okay.

  Please check in when you get a chance.

Hugs,

Bren