New Here! Mom in the UK w/reoccurance of BC and met in bones

tmma · New User Joined: 04 Oct 2007 Posts: 5

Hello Everyone.
I am new here and I am so grateful to have found this forum. I am living in Texas, and my Mum lives in the UK. 15 years ago she was diagnosed with breast cancer that had not spread and was given a mastectomy followed by 5 years on Tamoxifen.
3 months ago she developed severe bone pain in her legs and pelvis and found out she had bone cancer in her leg, pelvis and skull. They have told her it is likely the breast cancer spread, although they have not found any lumps either at the mastectomy site or the right breast.
Anyway, her condition has worsened quickly, and despite being on painkillers and a "hormone blocking drug" and radiotherapy-there appears to be no improvement. I call her and my sister multiple times a day- she is so depressed and cannot still get out of bed ( she has been in bed now for 3 months). I am beside myself and preparing to go over there ( to the UK) for a visit ( and to find out what exactly is going on-as no one I talk to on the phone has ANY answers at all).
I am tearing myself up here and feel so helpless....I know when I go to the UK, I do have to return here-my family ( husband and 7 year old) need me too-but the position I am in, I need some indication as to what is happening there. My family there are NOT asking any questions of the specialists ( I understand why, I really do, we are all frightened and upset)-but in this position here-I am out here not knowing which way to turn and worrying myself sick about her.
I know this post probably makes NO sense whatsoever...and I apologize to you all for that-it feels good to actually get this out, and I do appreciate any feedback.
As far as my mother's condition, the only information I have is what I have written up there.
I am worried sick about her-the nurse that comes out to visit her thought she would be at least out of bed for short lengths of time by now, and the fact that she is not worries me alot.
I should add that I, myself have multiple sclerosis, and I am doing my best not to put myself in hospital with an MS flare-up through this, as then I am of no help to anyone.
I keep looking on the internet, as that is my only source of information and I don't know what to think.
I am on the phone with my Mum all the time trying and trying to keep her positive and believing- but she is very depressed and it's getting so hard to keep her believing....I understand she is angry, and I am there for her to get at least some of the anger out. I feel so inadequate, but from here right now that's all I can do...And not knowing what exactly the treatment plan is, or what exactly the specialists have said or not is honestly driving me crazy. I am not trying to make this about me, I am really not...just confused, upset and frightened...and I feel safe expressing this here.

Thanks for reading, and sorry for my jumbled up rambling.
tmma.

brainman

tmma, no need to apologize. Both of my parents died of cancer and I was able to be with them so I cannot even begin to imagine how difficult this is for you... plus your own health concerns with MS! I assure you that you go to the UK with my thoughts and prayers. Keep us informed as you find out more information about your mother.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

tmma · New User Joined: 04 Oct 2007 Posts: 5

Thank you so much for reading and responding. I will be taking your well wishes to the UK with me and will update this post and let you all know as I find out more.
Thanks again.
tmma

Muttsmom

Hi tmma,

When you get to the UK, I'd be asking her onco when they plan on finding out if it's a reccurence of BC or a new primary. Also, is she not on any bone strengthner? Usually when they do rads to bone mets, they also give me Aredia, Xomeda (ap) or another bone strengthner that makes the bones stronger so the pain is a lot less.

The UK is where we get our info from a lot because the studies are able to be done more timely then in the U.S., but someone is missing something it seems like with your mom. I know many that have mets to the bones that have been stable for many many years and are virtually pain free. I'm not a doctor, but it might be time for a 2nd opinion. It may be that you learn a lot more about your mom's condition when you get there since no one is asking questions.

Please keep us posted and you take care of YOU too!!!

You're all in my prayers.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

Muttsmom

ooops. I put a (sp) because I wasn't sure of the spelling and even typed the wrong letters for (sp).... sorry
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

tmma · New User Joined: 04 Oct 2007 Posts: 5

Thank you all!
I do have some updates-
-I am leaving in 2 weeks-( it would be sooner, but my own neurologist/ MRI scan for my MS cannot be moved any sooner than next week, and I want to get that done before I leave).
-My Mum has started on some " ?biophosphates[sp]?" once a month to "build her bones" and has received a large dose of radiotherapy.
-She definatly "perked up" when I told her I was on my way- and it was so good to hear her sounding more like herself again...
That was until yesterday she was rushed to the ER with a DVT!! She is stable and on warfarin...They discharged her and now she is back in bed at home again...Right when she was starting to get out of it.....She is still angry and depressed, even more so now and tired, she is not eating either.
My heart is breaking as I want and need to be there,
I cannot wait to get over there-I really can't.
Thanks for reading another jumbled up post of mine-I'll update as soon as I get the chance.

brainman

tmma, I am glad that you will get to go see you mother in the UK. It will be good for you and for your mother to spend so quality time together. Please, let us know how the trid goes. I know that it is two weeks from now. In some ways, these next two weeks will pass so slowly but in other ways it will seem like time is flying by you.

Have a good and safe trip.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 648 Location: UK

Hi, tmma. What a difficult time for you and your family.

If your mother is not eating, suggest that she be prescribed "Esure" by her GP. I found it invaluable when my appetite disappeared as it was so easy to take and provided all the basics. It is bland, but it comes in several flavours, and can be used in recipes as well as taken straight.

Biphosphonates are standardly prescribed for bone conditions - they are what are given to those with osteoporosis.

tmma · New User Joined: 04 Oct 2007 Posts: 5

I mentioned to her about maybe getting a liquid supplement a couple of weeks ago, she mentioned it to her doctor and now they are going to deliver a case a month. Ensure is what she is getting, and she is drinking one a day, I believe, which is good news.
Thanks again, all....

tmma · New User Joined: 04 Oct 2007 Posts: 5

Hello Everyone, and thanks to all that read and responded to my thread. I just returned from the UK afew days ago and during my stay, my mother passed away.
The cancer was more extensive than originally thought.

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 648 Location: UK

Oh tmma - my deep condolences. I am so glad you were able to be with her at the end.

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