What to do?

New Contributor

What to do?

New to this forum thingy but here goes...

Diagnosed 12 years ago with metastatic breast cancer. Had spread to lymph nodes, liver, lungs and bones.

Following chemo lung and liver clear but multiple sites in bones remain. Currently on Herceptin and all stable.

The last 5 years have been hell with multiple health issues... renal aortic stenosis resulting in limited ability to walk  (PVD). This followed by an angiogram and stents in legs 3.5 years ago. Surgeon basically said I wasn't worthy of having the aorta cleared and a Stent wouldn't work. Result.. bugger all. Apart from nerve damage lower back caused by stent placement procedure.

Renal failure 2.5 years ago (unknown cause but all good after a week in hospital). While in hospital discovered I had osteonecrosis of the jaw due to the use of bisphosphonates. Now have four teeth at the ONJ site that are loose and need to ge removed. One is infected but very loose..... the cause of the pain which specialist said was from ONJ.

Surgeon wants to remove affected jaw bone which means altered facial features (I'm definately no stunner as it is), speech, ability to drink and eat. Feeding through a tube is not something on my bucket list!!! I refused the surgery and am hoping the tooth removal will eliminate the pain. I don't think I could go thru

with it and if I did, would be as miserable as buggery for the rest if my life. 

Should it be the only option I'm seriously considering stopping Herceptin and letting nature take its course. I have enough daily pain, which is manageable, limited mobility and need to hire a cleaner, gardener and dog walker. Kids have grown and moved away (although visit regularly) and partner passed away two years ago. Will just wait and see I suppose.... anyone else in a similar predicament?

5 REPLIES 5
Super Contributor

Re: What to do?

Hi Mummy1,

I'm sorry to hear what you've been going through.

This is tough, and I won't try and tell you that I know what you are going through, because I know that only someone who has had to live through it could ever possibly know how hard and difficult it is.

Have you talked to your family about how you are feeling and your fears and concerns?

 

-sch

Reply
0 Kudos
New Contributor

Re: What to do?

Thanks sch. Yes, my family are well aware of my thoughts. Totally understanding as they have seen me go thru it. They are also aware of a DNR in place on my advanced care directive.

I know I sound like a whinger but I am tired all the time, fed up with limits to what I  can do, etc. If I  am faced with this surgery I know I couldn't cope and I'd be a pain to be anywhere near. I would totally stop going out or having people visit.

Will just wait and see what happens and go from there.

Super Contributor

Re: What to do?

Hi Mummy1,
How are you? I hope you are well or at least feeling a little better.
I don't think you sound like a whinger at all. I think you sound like someone who is doing it tough.
What ended up happening with the surgery?

-sch
Super Contributor

Re: What to do?

Hi Mummy1,

I was wondering how the fatigue was going? Is there improving any?

What ended up happening with the surgery?

Thinking of you.

-s

Reply
0 Kudos
New Contributor

Re: What to do?

https://www.youtube.com/watch?v=KpNZoowANNU

Human itself is the most powerful machine on earth !

I believe him, at least it make so much sense than those drugs you'd spent so far without any effect and god knows how damaging it will cause to your body unnecessarily.
Reply
0 Kudos
Post new topic
Talk to a health professional
Cancer Council support and information 13 11 20Mon - Fri 9am - 5pm
Cancer Information and Support

Online resources and support

Access information about support services, online resources and a range of other materials.

Caring for someone with cancer?

Find out what resources and support services are available to assist you.