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Angiosarcoma

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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

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

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

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

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

Re: Angiosarcoma

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

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

Re: Angiosarcoma

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

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

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

Member

Re: Angiosarcoma

Thank you Sue and Lynne for your support and caring posts . I can't tell you how much it means ...am feeling rather emotional at the moment . It has been a real roller coaster ride since I was first diagnosed with breast cancer in 2008 ....then thyroid cancer in 2012 and now this in 20014 .
The Sarcoma surgeon was lovely yesterday and said he was pleased with the way my wound was healing . There is no more treatment to be had , so he is referring me to Oncology for future monitoring .They are part of the MDT so if any problems arise they can refer me back to the Sarcoma team quickly . When I asked about a prognosis he said it wasn't a good cancer to have and my tumour was particularly large , but each case is different (heard that before lol ) so it was impossible to predict what my specific cancer would do in the future !! At least he didn't tell me NOT to start reading " War and Peace " LOL .
So all in all it was as good as I could get ...just have to live each day as it comes .
Waiting for my oncology appointment then perhaps will start to think of a holiday .
Hope everyone is keeping well .
Love, Jill xx
Member

Re: Angiosarcoma

Hi Jill,
I have been following your recent posts and I want to thank you for bringing your unfortunate situation to our attention.
I agree totally that you should have been forarmed with the possible side effects and can understand that you must be feeling very angry and many other emotions too.
I sincerely hope that your forthcoming appointment will give you some much needed hope. Sending you lots of positive vibes and a big big hug! Take care and keep us all up to date with any developments. Xxx lynne.
Member

Re: Angiosarcoma

Hi sue,
Know exactly what you mean about over thinking everything! I do the same and it always causes me extra worry and anxiety.
Good luck with your forthcoming treatment. My radiotherapy starts on 12th march eeeek!!! Take care xxx
Member

Re: Angiosarcoma

Jill, hope your appoinment went well today

 

Sue  xx

Member

Re: Angiosarcoma

 

Thanks for your comments ladies, I always seem to overthink everything!

Just can't help thinking there is an 80℅ chance there will not be a recurrence, the tumour was grade 1, I am taking letrozole, which is working as it shrunk my tumour by 50%, surgeon got clear margins.......ho hum - guess it will be done,  but know I will be screaming inwardly at each treatment!

Take care everyone  Sue

Member

Re: Angiosarcoma

Everyone's case is so different Bobtail, so you have to weigh up the pros and cons carefully and look at your own risk situation .
I already had lymphoedema of the left breast following my axillary clearance , which immediately put me at higher risk , I might have gone ahead with rads even if I had been warned , just wish I had been able to have that choice , but it was never mentioned . I think it is important to be told the truth and involved rather than just have treatments thrust upon you . Good luck with whatever you choose to do .
Hugs,
Jill x
Member

Re: Angiosarcoma

Hi bobtail,
Please think carefully regarding not having your planned radiotherapy. If you have a 20% chance of the cancer returning without radiotherapy and a less than 1% chance of developing a angiosarcoma from having radiotherapy, its surely worth the risk? My oncologist said that out of the 1000s of people he treats with radiotherapy a really small number develop it. Im just about to embark on my radiotherapy and although like you I have reservations I think the return of the cancer troubles me more.
Take care and I hope you reach a decision which is right for you soon. Xxx
Member

Re: Angiosarcoma

Good luck with your appointment on Monday Jill. I am seriously considering refusing radiotherapy, although the oncologist said there was a 20% chance of recurrence without and did have 1 positive node, but I just don't feel comfortable with it

Member

Re: Angiosarcoma

I seem to be a lone voice with this horrid disease , but will continue to post as I feel it needs more publicity . Am going to see the sarcoma team on Monday as a six week follow up to my radical mastectomy . Hopefully will find out more about any treatment plans and prognosis .
Hugs,
Jill xx
Member

Re: Angiosarcoma

Thanks Nel , but there doesn't seem to be anything about this aggressive cancer in that thread .
Hugs ,
Jill x
Member

Re: Angiosarcoma

Thank you for the link Jo , I have posted on that thread , although as it is rather old am not sure if anyone is still there to reply . I will also give the helpline a call to see if there is any info they can give me . All I have found through my own research is very depressing . I feel so cheated that the treatment supposed to help me is going to kill me !!
Hugs,
Jill x
Highlighted
Member

Re: Angiosarcoma

Hi lavendersblue

 

I have done a search of this website and have found a thread from 2013 where angiosarcoma is discussed.  I have put you the link below.  As this appears to be quite rare you may find it helpful to give our helpline team a ring and talk to them about your concerns, they will be able to research any up-to-date information there is out there on this condition in order to support you.  Calls to the helpline are free from landlines and most mobiles 0808 800 6000.  Lines open at 9am today through to 5pm (weekdays) and 10-2 Saturdays.

 

Heres the link: http://forum.breastcancercare.org.uk/t5/New-members/Radium-Induced-Angiosarcoma-following-BC/m-p/741...

 

I hope you find this helpful.

 

Take care,

Jo, Moderator

Nel
Member

Re: Angiosarcoma

Hi lavendersble if you look in the post directly below yours. You make get some information there x
Member

Angiosarcoma

I was diagnosed with angiosarcoma on Christmas Eve , a direct result of the radiotherapy treatment I received for my breast cancer in 2009 . I can find no reference to it anywhere on this site and was wondering if there was anyone else out there suffering from the same problem ?