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Found out today I have secondaries

35 REPLIES 35
Susanne_A
Member

Re: Found out today I have secondaries

I have a colleague who has had bone mets for five years, and is still sailing, working full time. Of course it gets everyone different, but it doesn't have to mean the end of the tune - not even the last few bars.

trash
Member

Re: Found out today I have secondaries

Good luck Rhian, I have recently joined the 2nds club and am finding it so helpful and the experience of every one is inspiring.
Hope every thing goes well with chemo.I have to admit it's the thing I dread most of all after finding I have extensive bone mets. So far have had one course of radio and am having second course this week.
Love to all
Trash xxx

Happyfeet
Member

Re: Found out today I have secondaries

Good luck Rhian - sorry you have joined the 2nds club, I joined in June this year. I remember you from 2009 when I was first diagnosed. Losing the use of your arm is a tough one, how are you managing? The forums give a must needed boost to each other, great for swapping info on treatments - I am having 5 rads to area of concern in my neck then oral chemo (Capecitabine + Vinoralbine) for extensive bone mets.Wishing you all the best. x

sarah68
Member

Re: Found out today I have secondaries

Hi Rhian,

Good luck to you! Glad you have finished rads and hope chemo goes OK. Sign me up for a really good "gadget"! I have been researching them! Thanks for the laugh! I just get Twinnings green tea - cranberry or pineapple and grapefruit and add plenty of lemon - not too bad.

Love, Sarah x

Rhian
Member

Re: Found out today I have secondaries

hello

i finished my 10 rads on my shoulder last week, i am now having a two week break before startng chemo (Tax) and Avastin. I feel strangley calm about it all. I was surprised how tired i was towards the end of Rads, but do think taking so much pain relief does numb you somewhat. i have decided to eat healthily, as in 3 weeks i have put on a stone arrrgghhh , i had managed to loose 3, i know its the steriods, that have turned me into a two legged pacman, munching my way through the day especially when i am awake in the early hours. Also decided to drink green tea and have found a company called Tea Pigs, who have some really good teas, they are a little expensive, but as the tea doesn't taste of poo, like most green tea so i think they are worth it.

........me thinks the 'S & all that jazz; thread needs ressurecting to give us all a giggle so girls hope you have kept up the K excercises and have adequate supplies of the super glide.....lets get slip sliding away........ or induce a shortage ....aka Delia and Cranberries.....on Ann Summers and gadgets 😉

love to you all and thank you for all the good wishes :@))))))xx

alexamay09
Member

Re: Found out today I have secondaries

Hi Rhian - I just read your post and wanted to add my love and thoughts to those of the others.
alex
xx

cathjue09
Member

Re: Found out today I have secondaries

rhina, im so sorry to hear this news, you are one lovely ladie

julie x

debs
Member

Re: Found out today I have secondaries

Rhian, so sorry to hear your news, hope you are now in less pain and that the rads help, sending a big hug, Debs xx

Lulu34
Member

Re: Found out today I have secondaries

There is def some spooky goings on in this thread! it shows last comment by sailingmungo but the last post is by Drabble. But when I go to post the previous posts show up as a preview and it is sailingmungos post that's last.

Es mui estrango!

Lulu x

sailingmungo
Member

Re: Found out today I have secondaries

Hi Rhian,

Sending you lots of love and cyber hugs, thinking of you.

Sue x

cleomie
Member

Re: Found out today I have secondaries

Hi Rhian,

Sorry to hear about your diagnosis. You sound very positive and I am convinced attitude is really important in helping us to cope with these set backs.

I am having to learn to walk again and each day set myself a little target. Today I have gone up and down our back step twice with the walker and feel really pleased with myself. Silly really but I find it helps to have small but achievable goals.

Best wishes.

Thinking of you. Cleomie

Welsh_girl
Member

Re: Found out today I have secondaries

Love your spirit!
Go girl!!!

(hoping the fight isn't too wearing and that there are sunnier days ahead when you hear more about your treatment plan.)

Welsh girl x

drabble
Member

Re: Found out today I have secondaries

thinkin of you my tamworth friend,really dont know what to say,love you loads mate xxxxxx

NIM41
Member

Re: Found out today I have secondaries

Hi Rhian
So sorry to read about your latest news...
I loved your sense of humor on one of the other threads a while ago - just when I needed it. So herewith some cyberhugs coming your way, because you need it!
Nikki xx

Lulu34
Member

Re: Found out today I have secondaries

Glad the meds are helping Rhian. And good luck with your appointments, I hope the news is encouraging.

Love and hugs xxx

Rhian
Member

Re: Found out today I have secondaries

OH BOY! thank you all sovery much for writing, reading all your posts...though not sure were the disapearing ones have gone......reading through made my internal batteries re charge and glo.

i am still in a strange place at the moment as it hasn't sunk in, but i am determind to fight this i have too much living to do and the crapola, has no space in my life....

yes Lemongrove i agree there are positives in the strangest of places, but i will dig them out. Also i will keep humour, at times rather dark, but definately a little crazy and full of mischief

i find out more later this week, so for the moment i am happy to drift along (the meds help)enjoying not knowing and just dealing with the here and now.

Again thank you everyone for your posts , truly the are appreciated so it's 'the gloves are off, bring it on crapola, you have picked on the wrong girl'

love rhi xxx

hollymeg
Member

Re: Found out today I have secondaries

It is Halloween... could explain the missing posts... i just wanted to say Rhian how sorry i am to hear you have been re diagnosed... i hope your doing ok and everyone is looking after you. sending you a breast buddie hug xxx

alesta29
Member

Re: Found out today I have secondaries

This is def. strange because I posted on here last night too, and sent a pm!

Hey Rhian, hope you're OK. Let us know

Laurie x

Lemongrove
Member

Re: Found out today I have secondaries

I'm so sorry that this has happened to you. When I was diagnosed with secondaries, I felt shocked, terrified, and confused, and I suspect you may feel the same at the moment. If that's the case I hope to reassure you that these feelings will change. Obviously there will always be the odd wobbly moment, but eventually, when you begin to accept that secondaries are usually managed for years rather than months, and that there are numerous treatment options/new ones coming along all the time, the intense anxiety you are feeling now will diminish. What's more, if you're like me, at some point in the future, you may even see some positives. Obviously none of us want cancer, but I know that prior to my diagnosis I sort of lived on automatic pilot, my priorities were wrong, I took everything for granted, and had no spiritual dimension (I existed rather than lived, if you understand what I mean), but that has now changed.
In the meantime, try not to project into the future, give yourself time to make decisions (particularly about treatment), and just try to cushion yourself (family, friends, this forum, and chocolate/ wine are good).

JulieD
Community Champion

Re: Found out today I have secondaries

Yes, very spooky Welshgirl! I can see your latest post but not mine or Hollymegs!!!
Wherever they've gone to I hope Rhian has seen them!
Hope you are all managing, whatever stage you're at, love and hugs, Julie

Welsh_girl
Member

Re: Found out today I have secondaries

Not sure where my post to Rhian has gone to!
I'd love it to come back!
It was one of support and it now seems to have disappeared but I can read it and other recent messages from Hollymeg and JulieD if I scroll back but these three messages don't seem to appear in the forum section????

Where has it gone? Must be something to do with Hallowe'en after midnight!!!
Just wanted to empathise with Rhian and wish her well after reading her very sad story.

Tight hugs to you Rhian. xx

Welsh girl

Welsh_girl
Member

Re: Found out today I have secondaries

As I have a broken arm which will mend, I can only imagine your angst.
Such a heartbreak for you.
I know from my experience with other breaks (lasting for nine months of inability) that developing the strength in the other arm does improve quite rapidly....
Writing especially is easier to master than you originally imagine and other tasks can be developed but balancing activities where you need two hands is especially frustrating!

I admire your spirit and hope that improvements will occur with your future rads but in the meantime I just wanted to commend your incredible attitude. I hope you have extra 'hands' at home to support this terrible setback.

You have an amazing attitude to your sec dx.
I am so glad your pain is currently under control and that plans are in place for further treatment.
I have a little understanding of your situation but in no way want to minimise your devestation.
I am so sorry that you heard your arm could have been saved if people had listened to you more responsibly.
The anger must be horrendous for you.
Maybe use your left hook for attacking some of those who didn't listen..... I don't normally advocate violence but your case is just so difficult to read.

Tightest hugs to you tonight.

hollymeg
Member

Re: Found out today I have secondaries

Rhian, just stumbled across this and i am so sorry to hear your news... i hope your feeling better now they have sorted you pain management out and i hope your active treatment isn't too harsh on you. sending you a big breast buddie hug ... take care xxx

JulieD
Community Champion

Re: Found out today I have secondaries

Hi Rhi,
So sorry you've had the news we all dread. Glad to hear you are feeling a bit stronger and very pleased to hear that pain is getting under control. I won't lie, it's tough getting your head around a secondary dx, but somehow you will find a way. I still have wobbly days but 18 months on from secondary dx I generally manage to just live with it and am makimg plans to redesign my garden, trying to work out how to finance solar panels .......you do find a new normal.It's early days for you so allow yourself to go through all the emotions and be gentle with yourself. Love Julie x

Louise_BCC
Member

Re: Found out today I have secondaries

Hi Rhian

Sorry to hear of your diagnosis, but it's good to see that you've already received lots of support and reassurances from others.

We have a couple of publications which you may like to have a look at.

Our Secondary Resource Pack, it has information about diagnosis and treatment options and key questions for your treatment team:

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-resource-pack-bcc...

Also, our Take Each Day DVD might be of interest to you, it's a 30-minute film charts the lives of four women living with secondary breast cancer.

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/take-each-day-living-second...

Both can be ordered through the site.

Very best wishes.

Louise
Facilitator

Louise_BCC
Member

Re: Found out today I have secondaries

Hi Rhian

Sorry to hear of your diagnosis, but it's good to see that you've already received lots of support and reassurances from others.

We have a couple of publications which you may like to have a look at.

Our Secondary Resource Pack, it has information about diagnosis and treatment options and key questions for your treatment team:

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-resource-pack-bcc...

Also, our Take Each Day DVD might be of interest to you, it's a 30-minute film charts the lives of four women living with secondary breast cancer.

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/take-each-day-living-second...

Both can be ordered through the site.

Very best wishes.

Louise
Facilitator

Rhian
Member

Re: Found out today I have secondaries

thank you so much for your posts, the strength this site and you fab ladies give is amazing.

my anger has calmed as i realise it just not worth wasting the energy

the meds are working meaning for the first time in weeks i have had no pain, the relief is enormous.

there is no good time for what this damn bc throws at us, but i have just moved to my cottage on a hill, with a garden and a month ago i was so happy thinking i was putting so much behind me and closing the door, yet it managed to seep through. losing the use of my right arm is going to be devastating, but hey i have another, it writes like a 6 year old and will need some training but boy i will have a left hook worthy of a prize fighter ha ha

i will slide over and join you on the reoccur thread,

fairyqueen, my arm use went from full to nothing in less than 4 weeks so scary,hope your scan results good but chase them, i was told yesterday . i could have saved my arm if i had dealt with it sooner, but with the house move etc etc i just put it down to bad lymphodema and no one listened to my shoulder pain moans apart from my gp (who is far to dishy to be a gp)who pushed me to the front of the que last week and insisted on an mri

love and hugs to all , this won't beat me , i have to sort the garden for next summer for goodness sake, rhi xx

DJ007
Member

Re: Found out today I have secondaries

Rhian - so sorry to hear this. Hope the rads reduce the pain and that the CT comes back clear.
Sending hugs
Dx

junieliz
Member

Re: Found out today I have secondaries

Hi Rhian, sorry to hear your news and you having gone so far, and hope you will be able to get pain relief to help you over this, sending love to you, love junieliz x

Tawny
Member

Re: Found out today I have secondaries

Rhian, so sorry to hear your news. BCC have just produced a booklet written by people with secondaries which you may find useful. You can order a copy via http://www.breastcancercare.org.uk/secondary

Reading about others' experiences can often help us make sense of our own situation. Wishing you the very best for your forthcoming treatment.

Alison x

http://www.drbaba.wordpress.com

Manny
Member

Re: Found out today I have secondaries

I'm so sorry to hear this Rhian - and amazed at the strength your post shows already so close to your diagnosis.

Hope the radiotherapy helps reduce the pain quickly xxxx.

cannoliwings
Member

Re: Found out today I have secondaries

so sorry to hear this Rhian.

Sandytoes
Member

Re: Found out today I have secondaries

Rhian, so sorry to hear that you have developed secondaries. You were so lovely and helpful to me at the start when I was put on the same regime as you and I have followed your posts with interest and was very upset to see this one. So glad you are getting strength from this forum. xx

fairyqueen
Member

Re: Found out today I have secondaries

hi rhian, am so sorry you have secs dx i too am awaiting scans results as too have pain in shoulder and slowly losing strength in right arm and hand numb so i expect similar dx its so c*** that you have done so well for 3 yrs but as tina suggests come to our tn recurrence thread love and hugs rachel xxx

Gingerbud
Member

Re: Found out today I have secondaries

Hi rhi
so sorry to read ur news- I've followed ur posts on here being another triple neg lady. It must be very difficult for u as uv come so far- 3yrs on u must have hoped u had beaten this shi**y disease...
Best of luck with scans 🙂 fingers X'd there are no surprises anywhere else. Come+ join us on the triple neg recurrences/ secondaries thread if u want to chat.
You take care
tina xx

Rhian
Member

Found out today I have secondaries

Following months of pain in an area starting in the back of my shoulder, rib area running through to the front top rib area, i was told today i have secondaries in the shoulder.(my profile has my original dx details) the tumor is unoperable apparently too deep, but i am to start rads on thurs, though i did have rads to the same area with my primary. CT next week to see if it has spread to anywhere else
the pain during the last 3 weeks has been unbearable but tonight thanks to the cocktail of pain relief i am coping with it. i have lost the use of my right arm/hand and have been told i won't regain the use of it
i came away from the consultation today with very little info as i really wasn't expecting to be told it was back, tonight is the eve of my 3 year post surgery anniversary. having read through many secondaries posting tonight, i feel emotionally much stronger to deal with what lies ahead.
rhi x