Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Well, my letter from the oncologist came this morning ( second class post would you believe ??  ) and my chest x-ray was clear ....yeh !!! No sign of my angiosarcoma , so NED for the time being . That makes 8 months and 11 days so far . Counting ....moi ???? LOL . 

 

Whilst being delighted , I am also hugely apprehensive of the future recurrences that may happen . Such a bum disease that leaves you terrified of its shadow . Have being going to a series of Mindfulness classes , which do help one to appreciate the present and fear the future less . 

 

Tat , you must be nearing the finish line this week , hope the skin is holding up and the pain bearable . I went on " cooking " for quite a while afterwards , so keep up the moisturising and skin care . Have they any further treatments on the cards for you , or is it a regime of scans , x-rays and follow up appointments ? Am rooting for you all the way .... let me know how things evolve ....and oh yes ...FUAS !!! 

 

Hugs,

Jill xx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Hi Tat ,

 

One more down ...yeh !! Only 11 to go now , say it quickly though . LOL . 

 

Hope the CT scan goes well , and doesn't find anything lurking !!  They injected the contrast when I had my last one , but I had to sit and drink pints of water ..... yuk !! I actually like water and drink quite a lot normally , but all that in set space of time made me feel quite sick ....not to mention wanting to wee , when you're not allowed to 😳. 

 

Am waiting to see the x-ray results , then hopefully booking a trip to Portugal . We never got away last year due to AS and operations , then to crown it all our Mobile Home was washed away in the floods in the south of France in October 2015 . Bummer !!! Still it could have been worse , at least we weren't there at the time .Friends spent several hours sitting on the roof of theirs , in the rain and the dark

, before being winched up into a rescue helicopter !!! 

 

Hope you manage to get away too and can chill and relax .... FUAS as they say indeed !! 

 

Hugs,

Jill xxx

Member
Posts: 398
Registered: ‎18-11-2015

Re: Angiosarcoma

I know what you mean about side stepping the question and the 'everyone's different' comment could have come straight from my CNS's mouth!  I'm not criticising them as they are working on limited data too, but it's not much of a help for us trying to work out how to live with this awful cancer....  

 

Rad number 22 today after a day off yesterday while the machine was serviced.  The dressings are nothing short of miraculous!  I've carried on taking anti inflammatories for the swelling, but no other pain relief needed.  My energy levels have been near normal the past couple of days, possibly because I'm not in pain and am sleeping better.  All in all, I'm much more hopeful of finishing the rads now.  My onc wants a baseline CT scan so next Weds will be a long day with rads follwed by 2 hours in the CT unit chugging down more contrast liquid.  Good job I don't have a life outside of cancer at the moment!!   Excited to see signs of spring now though and planning to make up for lost time this summer Smiley Happy  Hope you manage to get away too.  Big hug and, as the Americans on the AS FB page say, FUAS!! xxx

 

 

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Hi Tat ,

 

So good  to hear from you , have been following your progress on other boards and am sorry to hear that your skin is so sore . 21/ 33 !!!  The pain must be awful , can really sympathise with you .

 

I only had 15 sessions and that was bad enough . Because  my boob was a tad on the generous side I had awful blisters on the underside , and  they gave me some great dressings  that were intended for ulcers !! Your rads are going straight on to your scar , I can't begin to imagine the pain !!  So glad that they have given you some dressings  that are really soothing . Hope the pain meds are good too !! 

 

Yeh , I am hoping it means " if " rather than  " when  " too . They changed my oncologist to the lung sarcoma specialist and he keeps inferring this is the favourite site for mets . I don't like to keep mentioning that mine has  already behaved out of character by metasticising into my other breast !!! LOL . I have asked them outright ( several times ) what they think my prognosis is , but they always sidestep the question , by saying everyone is different !! One reads such depressing statistics on the old tinterweb  , 70 % chance of recurrence within two years ( already hit that stat ) and only 30% chance of making five years disease free !! Bummer . Oh well ....onwards and upwards !!

 

Will let you know what results of x-ray are ....and keep following your progress .

 

Hugs,

Jill xxx

 

 

Member
Posts: 398
Registered: ‎18-11-2015

Re: Angiosarcoma

Hi Jill.  Good to see you posting, hope you are feeling well and managing to enjoy yourself despite the constant background anxiety.

 

When you say 'they expect it to metastasise to the lungs' I hope that means IF it metastasises the most likely place is the lungs???  I still haven't been given any view on prognosis despite asking direct questions and that is extremely hard to live with.  Sounds like your team are a bit more open about all the possibilities.  I'd definitely prefer that, rather than filling in the gaps myself with the limited published data I've found!

 

I am due rad number 21/33 today.  It's hard going, very sore, very tired and not a little fed up!  I was munching a lot of painkillers and seriously questioning whether I could continue rads until they gave me some PolyMem dressings yesterday.  The relief from soreness/itching/pain has given me hope I can finish the course and the tiredness will mean I put up less of a struggle being bundled into the car to rads!!

 

Please let us know when you have the results of your chest x-ray?    Tat x♥x  

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Been for my three monthly check up and chest x- ray today. Have to wait for the results of the x-ray , but am hoping all will be clear .....fingers crossed .

 

They expect my angiosarcoma to metasticise into my lungs , so my follow up appointments are all with a lung sarcoma oncologist now !!! He will see me every four months for a check up and chest x-ray , for the next two years , then every six months if we make it that far !!! 

 

Still waiting for a follow up appointment re my haematoma , rang up and was told it will probably be April !!! That two months is certainly elastic !!!

 

Hope everyone is keeping well .

 

Hugs,

Jill xxxx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Hi Sharon ,

 

Thank you for your lovely kind words , it is really good to hear from you here. I follow everyone's progress in the " Marching Together " thread . Glad you are enjoying your new job and looking forward to a nice break . Lets hope we all have a better year than last !! 

 

Have my three monthly check up with the oncologist on the 29th , so am keeping my fingers crossed he doesn't find any problems , so that we too can hopefully have a break in the sun .. yeh !!!  

 

Last time we had a holiday was in Sept 2014 , during which I hoped that the bruise on my left boob would heal up in time for my yearly mammogram in Oct !!!  If only I had known then what I know now !!! 

 

Lots of love and hugs and take care of you too. xxx

Jill xxx

 

 

Member
Posts: 600
Registered: ‎24-12-2014

Re: Angiosarcoma

Hi Jill Smiley Happy

 

Just nipped in to see how you are doing and I'm so pleased to hear you're NED at the moment, although I know the fear and worry are always present.  I just can't believe how positive you manage to be throughout all of this, you really are an amazing woman. I'm sending you every single good wish and positive thought in my possession for a happy and healthy year.

 

Lots of love and take very good care of yourself

xx

Sharon

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

I'm really sorry that you also have this bum disease Tat , but it is comforting to be able to talk to someone else who understands what it is !! 

 

I keep this thread going to try and keep some awareness of this disease out there . I live in hope that folks might be more aware of the symptoms and not ignore them in their ignorance like I did . It is rare , but sadly on the increase !!

 

Here's to an AS free 2016 for both of us .

 

Hugs,

Jill xxx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

I'm really sorry that you also have this bum disease Tat , but it is comforting to be able to talk to someone else who understands what it is !! 

 

I keep this thread going to try and keep some awareness of this disease out there . I live in hope that folks might be more aware of the symptoms and not ignore them in their ignorance like I did . It is rare , but sadly on the increase !!

 

Here's to an AS free 2016 for both of us .

 

Hugs,

Jill xxx

Member
Posts: 398
Registered: ‎18-11-2015

Re: Angiosarcoma

You've been through the year from hell, Jill.  Four lots of surgery, a neverending heap of stress and anxiety and yet you are NED; you give me hope against this dreadful disease.  

 

Here's to 2016 without the hateful angiosarcoma in it.  And you may be flat, but you are most definitely fabulous, girl!

 

Hugs, Tat xx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

[ Edited ]

 

Well a year ago today I was in hospital having a radical MX for my secondary, radiation induced angiosarcoma . I remember being devastated with the AS diagnosis  and convinced it was a death sentance . 

 

I was even more convinced that was the case , when only three months later it recurred in my mx scar and metasticised to my other breast !! And yet here I am against all odds , had to have  two wlx for recurrence and two mx , but all things considered I am fine , flat and doing well . Hope 2016 is kinder to us all.

 

Hugs,

Jill xx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Shall have a bit of a poignant day tomorrow  K , remembering the anniversary of my diagnosis , and all the fear and dread that came with it !! Knew the news was bad when the surgeon came in with the BC nurse and she took hold of my hand !!! 

 

Then OH  and I are going to have a nice quiet Christmas Day ,  stuffing ourselves ...or should that be the turkey ? We plan to over eat , then veg out in front of some moldy old film on the telly .. surrounded by chox and pressies !!!  

 

At one point earlier on this year , I wasn't even sure I would make it to Christmas , so to be NED and here to enjoy it all is brilliant . 

 

Hope all you wonderful  folk  have a really lovely  Christmas and a healthy New Year . 

 

Hugs,

Jill xxx

Member
Posts: 398
Registered: ‎18-11-2015

Re: Angiosarcoma

Just wanted to say I hope you have something lovely planned for tomorrow, Jill, that doesn't involve hospitals or AS in any way, and your Christmas is full of fun and laughter with the people who mean the most to you.

 

K xxx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Hi Rose , 

 

Good to hear from you again , hope your problems with your neck are no worse . Am relieved to be NED at the moment and am keeping fingers crossed it continues . 

 

Twas my birhday last week , so been out to celebrate both things !!! Not good for the diet though , LOL. We went to the Box Tree in Ilkley , very yummy . Cost three arms and a leg , but who cares !! 

 

Hope you have a great Christmas and an even better 2016 . 

 

Hugs ,

Jill xxxxxx

Member
Posts: 398
Registered: ‎18-11-2015

Re: Angiosarcoma

Thanks, Lizzy Smiley Happy. That makes sense - happy to wait for a PM button if it keeps trolls off the forum Smiley Happy
T4T x
Member
Posts: 863
Registered: ‎09-11-2015

Re: Angiosarcoma

Hi Tat4tit, 

 

I am sorry you have been having problems accessing private messenger.

 

We usually wait for relatively new users to post a few posts in the forum before they can access PM. This is just to avoid spam messaging.

 

It looks as though there was a bit of a technical problem with allowing you access but I have now fixed this. You should now be able to see the private messages icon in the top right hand of the screen. I hope this helps!

 

If you or any other users have any other problems I will be happy to help Smiley Happy Just email moderator@breastcancercare.org.uk . 

 

Best wishes, 

 

Lizzy 

 

Digital Community Assistant 

Member
Posts: 429
Registered: ‎29-10-2014

Re: Angiosarcoma

HI
I have also lost the PM function somewhere. I know , careless of me, but I've lost worse before now! Jill, I'm so happy to see that you are still NED and the chest xrays were clear. You little wonder woman, you! I realise that it's impossible to escape the fear of return but I hope you are enjoying this brilliant news!
Much love
Rose xx
Member
Posts: 398
Registered: ‎18-11-2015

Re: Angiosarcoma

I'm so glad your x-ray came back clear, Jill.  One in the eye for AS!  It seems that when you noticed the AS in your irradiated breast it all happened fairly quickly, so 5 months NED is definitely something to celebrate.  Just thought how ridiculous that would sound to a non-AS person!!!

 

I have requested a copy of my histopathology report, but have to go through 'access to patient records' which is a bit of a drag.  I've already done that for the misdiagnosing hospital and the diagnosing tertiary hospital, so this should be the last one from the treating hospital!  What a palaver!  My surgeon suggested they would monitor me via CT scans, maybe I should speak to the sarcoma team to find out the risks/benefits of x-ray vs CT... My sarcoma nurse is lovely and really proactive, but I find I have to follow up a lot more with the BCNs and see a different one every time I am there.

 

 

I'm still learning to find my way around this forum and can't see why you couldn't PM me.  I've checked all my settings, but haven't found the key yet.....  I only joined in November so I don't know what it was like before, but I wouldn't put it in the 'blindingly obvious' category for ease of use Smiley Wink  It's really kind of you to offer your email address Smiley Happy This forum is a lifeline to express thoughts I really daren't share with anyone else and wonderfully supportive.  

 

 K xx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Hi Kerri ,

 

Sorry it has taken me so long to get back to you , but I have had problems with my password for this site ....the new format is awful ...same old story ..take something that works and change it , but not for the better !!!

 

Yes,  I am the same Jill from the AS UK FB group , thank you for all your lovely comments , but believe me I have my moments ..LOL . I have been lucky and had some psychological support through my GP and that has resulted in having some  ' Mindfulness '  therapy , which does help.

 

I do know only too well the see saw of emotional states , and yes I have also been down the planning my own funeral road !! I have been NED for 5 months and can't quite believe it ...keep thinking they must have made a mistake and it is still lurking in my scar tissue .!!! Then I have times when I feel it really  has gone and I am on the road to recovery .....it is a very hard disease to live with because it is so aggressive and treatment seems limited .

 

I got my results for the chest x-ray last week  and thankfully it was clear .

 

Glad to hear that you are recovering from your mx and managing to get out for walks . But it is hard ....especially when you have the long wait for your results . It is always difficult the waiting period. One thing I would urge you do do when you go for the results,  is to ask for a copy of the histology/pathology  report. It is useful I think,  to be able to see it all written down later , when you can digest it more.

 

I will send you a PM and give you my email , so that if you want you can rant and let it all out , or if you prefer just do it here .

 

Take care , hugs,

Jill xxxxx