Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Sorry about the insurance problem Jane , I have a similar one , as I have 3 different kinds of cancer on my form ...breast , thyroid and now Angiosarcoma .....no one wants to know . LOL . Hopefully E111 will cover most things .

We have decided to wait until after the appointment with the oncologist before we book again , hopefully we can fit something in between air traffic strikes ....and any follow up scans I might need etc .

Hope your boob continues to hold out and you can get away on your trips too .
Hugs,
Jill xx
Member
Posts: 31
Registered: ‎18-02-2015

Re: Angiosarcoma

[ Edited ]
Hi Jill
Started rads on Wed so had 3 out of the 15. Busy applying cream. Nipple is cherry red and sore and rest of breast very pale pink. Try to go out walking most days but sometimes my resolve is weak. But I have nearly finished the quilt I'm making

When do you hope to travel to France or will you have to wait until you see your Onc and find out what he suggests. We have booked 2 trips even though at the moment I can't get insurance due to my recently discovered platelet disorder.
Best wishes and hugs Jane xx
Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

How are the rads going Jane ? Is your skin holding out and have you managed to get out walking ...or has the fatigue hit you ? Hope you are coping well with it all .

I feel as if I am just twiddling my thumbs now , waiting ...and trying to gen up on questions to ask the onco bloke when I see him .
Hugs,
Jill xx
Member
Posts: 31
Registered: ‎18-02-2015

Re: Angiosarcoma

[ Edited ]
So sorry to hear your news, I hope he has a good positive plan to help you. Often been wondering how you are doing Wishing you well for the 30
Jane xx
Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Would you believe it ..... our holiday fell foul of the French air traffic controllers strike !! Got to Liverpool airport only to be told flight was cancelled and no chance to get away before Tuesday . So came home again ..... now planning to go after my appointment with the oncologist ...bummer !!!
Hugs to all ,
Jill xx
Member
Posts: 31
Registered: ‎18-02-2015

Re: Angiosarcoma

Hi Jill
Planning CT and tattoos went well today, start Rads on 8 April. Hopefully will get insurance sorted after seeing specialist haematologist on 30 April.
Have a fab time in France
Hugs Jane ☺️
Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

[ Edited ]
Hope the walking group is fun Jane and you manage to get out with them . The holiday in Spain sounds wonderful and something to really look forward to after your treatment is over .
I know what a problem travel insurance is !! No one wants to know when I mention that I have had breast cancer , thyroid cancer and now this ...lol !! Luckily in France I can use my E111 if I really need to . Although there you have to pay at source and claim it back later .
Good luck with the planning session and the start of rads in April ....hope it all goes smoothly for you .
Hugs ,
Jill xx 😊
Member
Posts: 31
Registered: ‎18-02-2015

Re: Angiosarcoma

Hi Jill
Too cloudy in Sheffield to see the eclipse. Going for planning CT Wednesday 25 March and hope to start sessions 8 April. Booked hotel and flights for a walking festival in South of Spain in October. Hope to have finally sorted out travel insurance but then as hospital found I had a rare platelet disorder ( I don't clot properly) and insurance companies don't like "little bleeders" like me wanting to go off into mountains to do activities, too risky !!!! New best foot forward walking group starting here in Sheffield on 31 March, I plan to go along
Hugs and best wishes
Jane🌞 🌸
Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Thanks Jane . That is a coincidence as I too am in Yorkshire , and having my treatment with the Leeds' sarcoma team . Too grey for any sights of the eclipse today ....shame .!!
Hope things are going well for you with your treatment .
Hugs,
Jill x
Member
Posts: 31
Registered: ‎18-02-2015

Re: Angiosarcoma

Hi Jill

I hope you have a wonderful time in France. A little warmth and blue sky's are good for the spirits.. We have had too many flat grey days here in Yorkshire the last few weeks.. Wishing you well and hope the next few weeks fly past rather than drag.
Hugs
Jane x
Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Thanks Em , I suspect that the Easter hols have some part to play in the time gap . Still , will try to make the most of the time doing fun things for a change . Hope you are keeping well on your journey .
Hugs,
Jill x
Member
Posts: 183
Registered: ‎22-05-2014

Re: Angiosarcoma

27th April does seem far too long! If they really can't do better than that then going away seems like a good plan. I hope you are able to relax and enjoy the break, and that the weather is kind to you Smiley Happy

Best wishes,

Emxx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Got my appointment with the Sarcoma Oncologist , it will be on 27th April !! Seems an age away , but have decided to take the opportunity to get away to France for a couple of weeks to try and chill out .
Hope everyone is doing well .
Hugs ,
Jill xx
Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Thanks for your thoughts and support Jane , I can't tell you how important the wonderful support this site gives is .
Will report back when I get my appointment with the oncologist , just wish they would hurry up , waiting is so stressful .
Hugs,
Jillx
Member
Posts: 31
Registered: ‎18-02-2015

Re: Angiosarcoma

Hi Jill

Thanks for the info. Wishing you well with your journey. It sounds like a very tough few years.
Sending you big hugs and positive thoughts xx
Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

[ Edited ]
Hi Jane , I understand that it usually presents on the irradiated area as a bruise , blood blister , but there can be a lump and thickening of the tissue .

I already had lymphoedema of the breast , so had lumps and thickened tissue to start with . I asked every time I saw the consultant , with lymphoedema how will I ever know If there is a recurring problem ? I was always told the annual mammogram would pick up recurring problems ..... Unfortunately it doesn't pick up angiosarcoma !!!

I always had lumps and pains with my lympho so although they may have been early signs of the angiosarcoma I was ignorant of the fact . The first time I knew there was a problem was when I found a bruise on my left boob , which I thought was caused by an ornate belt buckle catching under my bra , whilst I was driving in the car. It didn't seem to improve , but a mammogram and ultra sound said there wasn't a problem !! Luckily my consultant went on to do a skin punch , which diagnosed angiosarcoma . By this time the bruise was turning into large blood blisters ...so knew it wasn't good news , even though I had never heard of angiosarcoma !!!

Just wish I had known more about the risk initially especially as I already had lymphoedema in my breast .
Hope your treatment goes well ....lots of love and healing thoughts for the future .
Hugs,
Jillxxx
Member
Posts: 31
Registered: ‎18-02-2015

Re: Angiosarcoma

Hi Jill

I am so sorry to hear about your situation but thank you so much for raising awareness.. I had my consultation with the Consultant Radiologist today and it was not mentioned at all.. Please excuse me asking Does anigiosarcoma always present on the skin suffer and does it always look like a bruise or are there any other things to be aware of. Wishing you well and once again thank you for sharing
Big hugs Jane

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

[ Edited ]
Thanks Lynne and everyone , for all your wonderful warm and caring messages. Am waiting for the appointment with the oncologist now , to see what the monitoring programme will consist of , and where I go from here .
On a cheery note , I drove the car for the first time since my mastectomy 6 weeks ago ....yeh !! At least I can get out and about now .
Hope everyone is keeping well on their journeys .
Hugs, Jill xxx
Member
Posts: 92
Registered: ‎08-01-2015

Re: Angiosarcoma

Hi Jill,
I am sorry to read that your sarcoma surgeon has told you that there is no more treatment to be had.
I wish I had a magic wand and I could take all this stress away from you.
We are all still here for you and please keep posting updates and we will all hold your hand on the journey.
Your in my thoughts and prayers,
Take care,
Love lynne xxxx
Member
Posts: 210
Registered: ‎03-02-2015

Re: Angiosarcoma

With all you have been through Jill, you deserve the best holiday. I have read so many times where people say live every day and do what you want, and when you join this 'club' you realise what it means. You sound very positive and that's what we are told to be, so my sweet, take that holiday, do as much as you want, and enjoy. Masses of love and keep smiling xxxxxxxx