Double trouble

Public Archive
1

Hey everyone.

My wife had breast cancer diagnosed last year, had the op to remove the tumour, found two types of cancer, full lymph involvement.
Had scans that showed no spread at all!

Due to other conditions they did not put her on chemo but went with just Tamoxifan and then in December just gone a six week radio therapy course.

We thought that was it!

However, she had been having lots of back pain and so her doc sent her for scans including a bone scan.
We got a phone call saying they had found ‘hot spots’ in her pelvis.
And a urgent appointment was made with the Oncology doc.

When we saw the scans it looked like someone had stood there with a paint brush loaded with black pain and spattered her skeleton with it!
She has it on her skull, pelvis, hips, and bones that go from hip to knee.

OMG.

He wanted to put her on Arimidex but she is still not pasted the menopause (49) so can’t.
Instead she has been give a Zollodex implant that we understands switches off the ovaries.
Carry on with the Tamoxifan and have treatment once a month with Zoledronic acid.

We were torn apart.

At the same time my mum is going through almost the same thing.
She had breast cancer way back and had a lumpectomy, Tamoxifan and then arimidex (not 100%) this kept her safe for 18n years then it came back and in 2005 she had to have a mastectomy.
Then, just like my wife she started getting pains in her back about a year later.
Found tumours in her neck, and two places on the lower vertebrae.
Radio T for them with some success, then a MRI showed a small area in her pelvis.
She starts a bone booster similar to my wifes tomorrow!

My wife has to have a MRI tomorrow to “check for any other surprises” as the doc said.
God I hope not. So very scared.

How can this flippin thing spread so fast in less than a year?
Gone from no spread to loads of spread.
My wife is in great pain, as is mum.
For me looking in its so hard to take.
I want to help them both but can’t do anything helpful for either.

When does this horrid cancer leave you alone?

Sorry to moan, desperate of Sussex

Mike

2

Hi Mike,
sorry to hear about your wife and mum. I have bone mets and started pamidronate last May it has really helped and my last scan showed good improvement. I already knew it was working as last year I could not get in or out of the bath without doing some very strange movements which defied gravity! So lets hope they put both your mum and wife on byphosphonates a.s.a.p.
The cancer thing is the pits and puts so much pressure on all the family. Hope you find that this site helps you, it has certainly helped me.
Love Debsxxx

3

Hi Mike, I am so sorry to read what a hard time you are all having right now. This disease follows no ryme nor reason and it strikes in so many different ways.

I hope that the teams responsible for your Mum and wife get good responses for them to their treatments. I am only early on in my coming to terms with spread and dealing with the effects (last Oct it returned) but so far I am doing ok and getting through life as best I can, I hope for the same for your Mum and wife.

Good luck
Nikki

4

Hi Mike,

I really hope that tomorrows MRI holds no more surprises for you and your wife. It is always so shocking when we face the news that it has spread - it’s a very scary place. My original dx was 19 years ago now - I have had a few ups and downs but was dx with extensive spread to my bones in 2002. I know what you mean about the paint brush splatterings -only mine had a more artistic hand. They were perfect back circles throughout my skull then the splatterings everywhere else - in my shoulder, ribs, all of the spine pelvis and hips. The pain too was pretty awful BUT… I was put on a bone drug - not the same one but pamidronate. From thinking I had very little time left and in a wheelchair at that I was amazed at the difference the bone drug made. It takes a little while so she will probably need pain meds and maybe some radiotherapy to help the pain until the drugs kick in. But they do and they work well. So take courage and I hope all goes well with the scans tomorrow.

We will be here when you need us.

Dawnhc
xxx

5

Hi Mike

Ye are having a dreadful time - and i know how sick ye will have felt the day they told you about spread. Had the same news given to me the week before christmas. I was clear before chemo in may and had a CT done after surgery as i had complete lymph node involvement. I have it in all of my spine and pelvis - i couldn’t believe it - and like you find it hard to believe that only 7 months earlier i had clear bone scan/CT and MRI !!! but at least with early detection it might give us a better chance at preventing further progression. I’m on Zoladex (37yo) and femara and the Zometa infusions once a month.

Hope scan goes well

Best of luck to all 3 of you

Mariax

6

Hi Mike and all you ladies

What a double blow to you. Hopefully once treatment starts there’ll be a vast improvement. I, too, have bone mets and my skeleton has perfect round dots at every joint and other places. I’m on bondronat, a bisphosphonate, and have very little pain. In fact, “they” now consider bone mets as a chronic disorder rather than life-threatening.

Your wife and mum are very lucky to have so caring a husband and son.

Good luck to us all.
Maureen xx

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Hi Mike and all,

I’m on Zometa for the “black spots” on my ribs and have to say that there has been no change to them for more than a year. I had chemo and am now on Femara. Like GrannyScouse said, they now consider bone mets as a chronic disease. But what awful timing for both your wife and Mum to find out they have it!! I really feel for you all. Hope your medical team will be able to do something about the pain and hope the biphosphonate will quickly kick in.

Peggy

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I don’t have bone mets but just wanted to say that I think we should be very wary of considering any secondary breast cancer as a ‘chronic disease’ Yes some medics are beginning to say this and the words may bring some comfort to some people with mets, but they are not accurate and they are premature.

Bone mets alone don’t usually kill but they can do…and of course one big problem is that if you have active bone mets then your cancer could spread elsewhere at any time.

It is great that some people are living a very long time with bone mets…but some aren’t and if we are to keep in the forefront of our campaigning the fact that breat cancer is killing over 12000 women every year in the UK then I think it does no one any favours to talk about it being a ‘chronic’ condition.

Jane

9

Hi Jane,

I stand corrected. Was a comment one of the oncology doctors made to another patient I shared a room with and somehow it stuck. Of course we shouldn’t consider any mets as a chronical disease. Just wish we could.

Peggy x

10

Hi all, thanks

Due to the snow here we got called into the hospital for the MRI early! this was a welcome thing I must say, they had a number of cancellations.

When we got home there was a message on the phone from the same department asking when she could come in for a CT scan!!!
If only they had checked could have done it directly after.

Seems like her Onco has pulled out all the stops for her and a number of ‘urgent’ letters have been sent.

Well, the MRI has been done so its in the lap of the gods now.

I don’t think she could take anything more, poor lady has had crap most of her life now this :frowning:

Mum, had her first treatment today.
Bisphosphonate again and a different name to my wifes one.
They seem pleased with mum.

I am encouraged to read your experiences of bisphosphonate treatment! let us hope it will give her back some life quality and let us live a little before the next slap in the face comes!

She is in a lot of pain! I hate to see it and feel so helpless, have to take myself away and go and wash up or something at times, then feel guilty!

Still, we never know what development might be around the corner! a new drug or treatment may be just waiting for us.

Thanks again.

Mike

Snowy Sussex