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Angiosarcoma

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Re: Angiosarcoma

Hi! So sorry that you've had a recurrence! There are many treatment options, but too many physicians are unfamiliar with angiosarcoma! We have a number of very long term survivors with secondary AS of the breast. I hope to see you on our site! You would laugh, there are at least 20 people awaiting your arrival on the site :-) they were all watching and waiting to see if my post would make it past the moderator as at first they ( the moderators) thought I was trying to advertise something LOL. Sending love, strength and all the best!
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Re: Angiosarcoma

Just adding another chapter .... on Monday morning I suffered an episode of TGA , ( transient global amnesia ) and ended up in the local A& E scaring my poor hubby half to death . I have no memory of Monday morning at all , it is wiped from my memory banks .Apparently this is scarey but not serious , rarely re-recurrs and is caused by trauma and stress ..... brain going into overload I guess !!
Feel as if I have been whacked with a wet haddock , but coming round a bit today although Monday morning is still a complete blank !!
Hope everyone else is OK .
Hugs ,
Jill xxx
Member

Re: Angiosarcoma

Hi Eileen ,
I am so sorry to hear the sad news of the death of your daughter , that must have been so dreadful to bear . Yes you are correct, I have secondary angiosarcoma , caused by the radiotherapy treatment that I received for breast cancer in 2009 . Hard to cope when the treatment meant to save you is actually killing you . Mine is very aggressive and has returned in my mastectomy scar and other breast after only 4 months , with little treatment to offer apart from surgery at the moment .
Thank you for the heads up on the FB page , I shall look out for it .
Hugs,
Jill xxx
Member

Re: Angiosarcoma

I guess I need to be very careful with this post as I got an email saying they rejected the last one as they thought I was advertising something! My daughter died in 2011 of primary angiosarcoma of the breast.  If I understand correctly, you developed angiosarcoma due to radiation of a previous breast cancer.  Our facebook page, " Angiosarcoma Cancer" has hundreds of members from all over the world.  They are  fighters and survivors of angiosarcoma or caregivers of someone with AS.  We have a number of survivors of secondary AS of the breast due to radiation. We even fund our own research via cycle for survival, and numerous other events as angiosarcoma is, as you know, very rare and being an orphan cancer is not funded.  I wish you all the very best in your fight and know that you are more than welcome to our FB page for lots of information, latest studies, love and support!  Eileen

Member

Re: Angiosarcoma

I had long hair too Tess , down past my shoulders of which I was very proud !! I knew my chemo would cause it to fall out , so I went to the hairdressers and said please cut it ,short like a boys . She was horrified and tried to persuade me against it , so eventually I said I was having chemo and it was going to fall out !! She was gobsmacked , but immediately set to with the scissors . She told me years later this had a real effect upon her . About two weeks after my first dose of Epirubicin , I started to get clumps of hair on my pillow , and lumps in my comb !! I decided , being vain , that I could not bear to be seen with bald patches , as if I had ringworm or something ,so got my lovely hubby to shave it off with hair clippers . I usually did his with those on a number three !!
I did get a wig but hated it , so always wore big scarves tied into turbans , with fancy knots and brooches pinned into them . Large and showy !! I hated the little caps and hats the cancer specialists seemed to provide felt they made me look like a victim , I wore my headgear with pride . LOL . Gots lots of compliments ... eventually I also lost my eyebrows , eyelashes , which was horrid , but also all my body hair etc . so some bunuses !!!!
What cocktail will you get ? I had accelerated Epirubicin and Capecitebine (sp ) as I was on the Tact 2 Trial , thank goodness I was as they followed me up for longer than normal , which helped my Angiosarcoma to be spotted !! Goodness knows how long I would have ignored it for after my mammogram came back clear if not !!!

Have had friends call in today , which was nice , lovely to see them again , but was shattered after they left , needed a few zzzzzzzzzs to recover . LOL .
My armpits seem to have been wrecked with my surgery on both sides , was just thinking as I washed today , no showers yet , due to stitches , that shaving will be fun in future ...NOT !!!

Lucky you to live near the beach , I really envy you that , whereabouts are you ? My hubby comes from Whitby , so we do sometimes get back there and enjoy the beach .

Take care and keep well .
Hugs,
Jill xx
Member

Re: Angiosarcoma

Hi Jill, sorry that you are in a lot of pain just wish I could take it away for you.  Three weeks is a long time to wait for your results but I am sending good vibes and hope time does not stand still. With the waiting it seems to be forever but normally time flies by and we never have enough hours in the day.  I am having to wait just over a fortnight for my chemo and have done about 10 days now but it does seem forever.  It starts on the15th. I have to pluck up courage and have my hair cut shorter and it seems silly but I really don't want it cut. I keep thinking I won't have it cut and nothing will happen.  I know if I don't have it shorter I will lose it even quicker. I'm pathetic really but it is like an admission that I have cancer.  I know I have but it will be like telling the world.  I am having the cold cap but also got an appointment booked for a wig. My oncology nurse gave me the information on the cold cap and then promptly booked me for a wig appointment.  I did think was he trying to tell me something.  Probably my imagination.  I know two of my drugs on the chemo cocktail (I wish) I will definitely lose my hair and the 3rd is a possible. Sorry about the negativity but occasionally it comes in waves a bit like the tiredness. On a lighter note my new trick is putting my tops on back to front.  I have been doing this all week.  Maybe I should start a new fashion.  One thing my friend noticed that with the 4 nodes gone I have no batwings on that arm. I did think about designing a one armed jumper to show it off. This morning we went on the beach with my daughter and two friends and our three dogs. My daughter is so bubbly I felt so happy and had a fabulous time.  I forgot all that had happened and what will be happening.  It was wonderful. My hubby (I now call him Pingu due to his broken hip as he walks like a penguin) and my friends hubby who has had knee op hobbled on the promenade while we girls went down to the sea. The dogs swam and had a brilliant time. After all this treatment I have this to look forward to plus a really good holiday. Someone said you have to give up a year of your life. I will do that and then get my life back.  Knowing me though I will still make it to the beach no matter how I feel.  To me it is like taking medication to watch the dogs and us having such fun and a good laugh.  They keep joking saying they will be chasing my wig down the beach.  That should be a sight for sore eyes but good for a laugh.  Tomorrow I am going shopping with a friend so that should be good.  I have a knack for finding bargains and have loads of clothes but can still find room for some more.  I have a lousy memory but I can remember almost all the things I have bought and how much they cost.  Weird that as someone last night said what did you have for dinner yesterday and I truly couldn't remember. This forum keeps me from losing the plot it helps so muchknowing we are all in a similar position.

I am thinking of you.  Keep in touch and let me know how you are getting on.  I hope I have made you smile at my antics which are even worse than before but they make me laugh.

Love Tess

xxxx 

Member

Re: Angiosarcoma

Hi Tess , good to hear from you . Sorry that you are so tired , please be careful in the car !!! My hubby has been great too , making homemade soup for me today , bless him !!
Am feeling sore and tender , this mastectomy seems more painful than the first , last time he took the chest muscle too , which left everything rather numb I think . I am also more bruised , black and blue all over , beginning to wonder if he let his students loose on me ...LOL Hopefully things will improve slowly but surely .
When do you start chemo ?
Hugs ,
Jill xxx
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Re: Angiosarcoma

Thank you so much Petal . Have to wait 3 weeks for biopsy results to find out if they need to do anything else .....why do we spend so much of our journey waiting for results ??? Wish they would quicken that part up to spare our shredded nerves !!!
Hope you are recovering from your rads and the herceptin trial is going OK .
Hugs,
Jill xx
Member

Re: Angiosarcoma

Hi Jill, so so pleased no further spread and that you have had your op and you are now home. I was thinking of you and wondering how you got on and suddenly had a light bulb moment Woman Wink (me before I start chemo)  and went into your thread.  I think that is what it is called as I am a newbie at this.  Home is definitely the best place to be. I am thinking of you as I know, as you do how painful it is but you will get through this but as you know it takes time and patience.  None of us appear to have a lot of that as time stands still and we just want to be getting on with things.  I took my son to work the other day and fell asleep at the traffic lights. He woke me up and I shot off and the car started bleeping.  I was going with the handbrake on.  Luckily I didn't break it. My body is telling me to rest but the brain or what I have that stands for a brain is ignoring the message. Today hubby cooked me roast beef and all the trimmings.  He is spoiling me as well as trying to build me up ready for chemo.  He cooked a joint which serves 14-15 so we will be eating a lot of beef this week in different guises. Keep in touch when you feel well enough.

Take care and get plenty of rest.

Love Tess

xxxx

Member

Re: Angiosarcoma

That's great news Jill about the CT scan. Have been thinking of you and checking this thread to see if there had been any update. Wishing you a problem free recovery. Hope you're getting plenty of rest and that everyone is looking after you. Sending lots of love and hugs xxx
Member

Re: Angiosarcoma

Hi Jill

I'm so pleased that the CT scan was ok, and that the surgery is done. Now you just need to concentrate on getting better. I can't imagine what it feels like to have to go through it again but you have been so strong to get this far, especially with all the waiting etc, that I am sure you can do this.

Take it gently and feel better soon Smiley Happy

Hugs, Emxx

Member

Re: Angiosarcoma

Hi Em , last few days have been a bit of a blur really !! Got to the ward for 7.00 am and CT scan result was through , no further spread thank goodness , so happy to go ahead with mastectomy and WLX of my scar . had my surgery on Thursday , bit woozy Friday ,with low blood bressure . Surgeon said he needed my drain to stay in till Monday , so could either stay in hospital till then , or go home and empty drain myself then come back Monday . so chose the latter . LOL
Hubby and I did this last time and coped quite well . Am quite tender and sore , this side more painful than last one to be honest ...but good to be home .
Hope you are keeping well .
Hugs,
Jill xx
Member

Re: Angiosarcoma

Just wanted to say that I hope everything is going alright. If you had the mastectomy today I really hope all went well and wish you the swiftest recovery.

Take care, Emxx

Member

Re: Angiosarcoma

Hi Jill.

I'm really pleased they are moving quickly and keeping everything crossed that the ct scan doesn't show anything more sinister than the stuff you already know about.

If you do go in tomorrow then I really hope that everything goes well and I will be thinking of you. Stay strong Smiley Happy

Emxx

Member

Re: Angiosarcoma

Thank you Petal and Em , everyone has been so wonderful an supportive . Been for my CT scan this morning , they are trying to rush the images through to the surgeon , if they can get them to him today , he will do my mastectomy tomorrow ! If not next week on the 11 th . Am waitng on tender hooks for phone call from the hospital , to see if I am going in tomorrow . If so have to be there at 7.30 am !!! So much stress ...... aaargh !!
Hope everyone else is OK.
Hugs ,
Jill xxx
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Re: Angiosarcoma

Good luck for today Jill, will be thinking of you xx
Member

Re: Angiosarcoma

Hope all goes well tomorrow Jill.

Emxx

Member

Re: Angiosarcoma

Hi Jill

I'm really pleased that your support nurse is being supportive Smiley Happy

And that the CT scan is not a long wait - although I know even a few days will seem like forever. Will keep everything crossed that there is no more spread. Hope you find something nice to do over the weekend.

Take care.

Emxxx

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Re: Angiosarcoma

Thank you Em , I really appreciate your care and concern . Just heard today that my CT scan is on Wed 3rd June and mastectomy and WLX the following week on the 11th June . Just want to get it all over with now ...but they need to know if it has spread before they operate , hence the wait for the CT scan results . Have to say my support nurse has been brilliant .
Hugs
Jill x
Member

Re: Angiosarcoma

Hi Jill

I hope you are doing ok. Just wanted to let you know that I am thinking of you.

Take care,

Emxx

Member

Re: Angiosarcoma

Thank you Petal , all your support means a lot .

Hugs,
Jill xx
Member

Re: Angiosarcoma

Oh Jill

I was thinking of you yesterday and hoping it would be good news for you. This is such a horrible disease and very unfair.

Try and stay strong we are here for you. Sending you lots of love and hugs xxx
Member

Re: Angiosarcoma

Thank you Sharon , Em and Lucy for your caring thoughts . This group has provided such wonderful care and support .

I am feeling stunned and shell shocked to be honest , can't believe this is happening to me , just hope the CT scan happens soon and the results allow them to let the operation go ahead .

Hope things are going better for everyone else ...

Hugs,
Jill xxx
Member

Re: Angiosarcoma

Dear Jill,

 

I'm so sorry to hear your news, really don't know what to say so just wanted to let you know I'm thinking of you and sending every possible good wish your way.

xx

Sharon

Member

Re: Angiosarcoma

Hi Jill
I am sorry to read that you are having such a worrying time, please don't forget that our helpliners are on hand for you with a listening ear and support - lines are open 9-5 during the week and 10-2 Saturdays on 0808 800 6000

Take care
Lucy BCC
Member

Re: Angiosarcoma

Oh Jill I am so sorry Smiley Sad

 

I don't know what to say really, other than I am thinking of you and sending love and hugs.

 

I hope they pull their finger out now and the ct scan is very soon. Stay strong.

 

Emxx

Member

Re: Angiosarcoma

Well today brought the worst of all possible news !! The angiosarcoma had returned to my scar site , and has also developed in my remaining breast !! It is very aggressive to have returned so soon , plus really unusual to be in the other breast . As it is a cancer of the blood vessels I suppose it can move anywhere ...bummer .

Next step is to have a CT scan to see if it has spread to my brain , lungs or liver ....then more surgery . Second mastectomy and another WLX on my scar to remove that patch !! To say I am stunned is an understatement . I thought it might be back in the scar but did NOT see it being in my other breast .
Nothing can be done till CT scan is done ...so guess what ? Still playing the waiting game !!!
Jill xx
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Re: Angiosarcoma

Thank you so much for your love and support Em and Petal , means a lot . Will let you know how I get on ...am going to try munching my way round Malton Food Fair to take my mind off things . Worry and stress are really NOT good for the diet !!

Hugs ,
Jill xx
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Re: Angiosarcoma

Keeping everything crossed for you Jill. Good luck and sending lots of hugs xx
Member

Re: Angiosarcoma

Since this whole thing started I think it is the waiting for results that has been the most stressful part. I hope you can have a peaceful weekend, and I will be thinking of you on Tuesday.

Hugs.

Emxx

Member

Re: Angiosarcoma

I have an appointment for my biopsy results , Tuesday 26th . It has been really stressful waiting , almost two weeks since my biopsies were taken . Can't really believe that it takes soooo long for the path labs to do the tests .

Roll on Tuesday .... hope everyone else is coping with treatments and keeping well .
Hugs,
Jill x
Member

Re: Angiosarcoma

Thank you Em , everyone on this forum is really wonderful . It is so good to have a place where you can write and say what you think , can't tell you how much it helps .
Hope things are going well for you .

Hugs,
Jill x
Member

Re: Angiosarcoma

Hi Jill

Sounds like you have had quite a couple of days! I hope you have something good to distract you while you get through the wait for results.

I will keep everything crossed that you get the best news possible.

Take care,

Emxx

Member

Re: Angiosarcoma

Latest up date ....feeling a bit like a Swiss cheese tonight ...so full of holes in my chest , I shall have to be careful how I drink my tea . LOL.

Went for my skin punch biopsy on Monday , and my consultant was lovely ...said he was not too concerned with the patch on my scar , but did the biopsy anyway . He expressed more concern over a lump in my one remaining good breast ....prodded and poked and said I needed a mammogram and ultrasound biopsy as soon as possible !!! Eeek .

By this time the Imaging Suite was closed , so I went back this morning ....had a mammogram , then ultrasound scan .....lovely young radiographer , said she could see the lump so would do guided biopsy there and then . Also said that they could see a swollen lymph node next to the lump , so would biopsy that too . Double eeek !!!

Upshot was the doctor did about 4 punch biopsies on the lump and a FNB on the node ....so feeling very battered and bruised . Of course now I have to wait for the results ....probably take 7 - 10 days ......

All I can think is , here we go again .... but is this the angiosarcoma spreading or the breast cancer returned ???? Why oh why do results take sooooo long to come back ? Nerves are in shreds ....

Hope everyone else is faring better ....
Hugs ,
Jill x
Member

Re: Angiosarcoma

Hi Nenya,
Thanks so much for asking , really appreciate that . Finally managed to get an appointment for Monday afternoon , so hoping that will know more then . Of course if he does a biopsy then , will have to wait for results . Have just stuffed my face today trying not to worry ...waiting is not good for the diet .LOL .
Hope you are keeping well and recovering from the rads without too many reactions .
Hugs,
Jill xx
Member

Re: Angiosarcoma

Have you had any news? Xxx
Member

Re: Angiosarcoma

Just keeping my thread alive , as I feel it is important not to let this awful disease be swept under the carpet . Still not heard from the hospital re my skin punch biopsy , so will have to ring on Tuesday and enquire . Why have all my biopsies and results fallen on bloody bank holidays ? ...grrrrrr. It is soooo stressful having to wait those extra days . Keep looking at my mastectomy scar trying to work out if there really is a patch of bruising there or not !!!
Now also have a tender ' lump ' on remaining breast just below the armpit . Will mention this when I ring ....to be honest I would be happy with a second mastectomy .
Hope everyone is keeping well and coping .
Hugs,
Jill x
Member

Re: Angiosarcoma

Went for my first visit to the oncologist today , lovely young man ....wonder if his mum knows he is out !! Very nice bedside manner ,and answered all my questions . Some good news and bad ....good news was that the biopsy from my haematomas was clear ..hurrah ...bad news was he didn't like a small bruise on my scar line , so is sending me to the clinic for a skin punch !!
As the most common site for recurrence is in the lung , he also sent me for a chest x-Ray . Apart from all that the plan is to have three month follow ups with any necessary tests etc .
So holiday to France is put on hold again for a while ...bummer .
Hope everyone is keeping well .
Hugs ,
Jill x
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Re: Angiosarcoma

Well missing out on our holiday had its bonus , as I went back to see the consultant about my seroma . He sent me for an ultrasound and then they drained it whilst watching the image . Turned out to be a haemotoma and they drained 350ml of blood from it . At least it was only that and not the sarcoma returned , which the consultant did think was a possibility as it was so large and hard . they have taken a sample for biopsy just in case . Nothing is ever straight on this BC journey !!
Hope the rads are still going well and the boob is not too sore and red . Is the Doublebase cream water soluble ? They told me I had to use a cream that was water soluble and soap alternative and dolled out aqueous cream . So that it washed off easily in the shower...
Hugs,
Jill xx
Member

Re: Angiosarcoma

Hi Jill
Session 5 this teatime, my poor boob is cherry red and a bit swollen and slightly puffy under my arm. Apply loads of aloe Vera and doublebase cream.
First trip beginning of June then walking festival first weekend in October, today whilst waiting for my session (over an hour late) I was thinking I could do with some time away before my return to work!!

My thoughts are with you. I personally find waiting to know what the plan is is the hardness so you are in my thoughts. Take care lots of hugs Jane xx
Member

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

Re: Angiosarcoma

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

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

Re: Angiosarcoma

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
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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

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 ☺️
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Member

Re: Angiosarcoma

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

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

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

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