Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Went in yesterday for the WLX on my previous mastectomy scar , the surgeon took quite a large patch and am back home again with another drain !! Hopefully it is also draining the haematoma that was the result of my first mastectomy in January and has been a nuisance ever since !!
Will have to wait the usual 2/3 weeks for the pathology results to see if he has got the clear margins that he wants . Fingers crossed !!
Hope everyone is keeping well .
Hugs,
Jill xx
Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Hi Em ,

Yes as far as I know , as long as they get clear margins and there is NED , there is no other treatment . Just regular check ups and scans plus chest x-rays . So fingers crossed .

I had a couple of compression garments made for me , they helped my back and side , but not the area in the breast .... although I had a few courses of MLD and that helped . I also got a video on how to do it for myself , which was very good . Hope they don't keep you waiting too long and can help .

My brother lives in Putney and had his hip op in St Georges last year !!
Hugs,
Jill xx
Member
Posts: 183
Registered: ‎22-05-2014

Re: Angiosarcoma

Hi Jill

I think you are right that getting it over with will be fo the best, then you can put all your effort into getting over both ops together. I know it's not fun being called in at short notice - when I went in for lumpectomy they phoned to call me in when I was walking round Sainsburys, and now I can never look at the pasta aisle in the same way Smiley Happy

When the ops are done and they have clear margins will the treatment be complete? 

 

My lymphedema seems to be everywhere, although it is worst in my arm and side of axillary clearance (I still have no feeling in the back of my arm and my armpit). I have seen the local clinic and they were great and ordered me a compression garment to help across my chest, but I think they are just overwhelmed so it is such a long wait. They ordered it in February and I don't have it yet Smiley Sad Now I have got an appointment for St George's hospital (Wandsworth?) but that isn't until the end of August. As we know, the waiting is not fun.

 

I will be thinking of you on the 1st, and I am sure it will go really well. Stay strong.

Best wishes, Emxx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Hi Em ,
Less time to relax and chill than at first thought !! Got a phone call from the sarcoma team , they have a cancellation , so can do the op on Wed 1st July instead , only 5 days to wait now !! Will be glad to get it over and done with .

Hope you are keeping well and improving . Have they suggested seeing a lymphoedema clinic for your problem ? I went to a local clinic and they were brilliant , I had it in my boob after axillary clearance and in my back and side . Luckily not in my arm , thank goodness .
Hugs,
Jill xx
Member
Posts: 183
Registered: ‎22-05-2014

Re: Angiosarcoma

Hi Jill

Thank you for posting. I'm very glad indeed that there was some good news! And I know it's horrible, having to go through it all over again, but at least they know what they are dealing with and are on the case. I hope between now and 8th July you will be able to relax a bit and maybe enjoy some time in this glorious sun Smiley Happy

 

Take care,

Emxx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Well the news was mixed . The metastatic area in the right breast , where they did the latest mastectomy had clear margins and there was no lymph node involvement , which was great .
However , they did not get a clear enough margin in recurrence site in the scar of the left hand side mastectomy , they had < 5 mm and felt they needed more , am going back in on the 8th July , so that they can have another go . Bit of a bummer , but it could have been worse , might have needed to lose chest muscle on right side as well !!
Hope everyone else is doing well ..
Hugs,
Jill xx
Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Thanks Em . So glad to hear you had a good break in the country , seems an age since we last really went away ....Sept last year . We tried to go to France in April , inbetween hospital appointments , but were thwarted by the French Traffic controllers strike !! So instead of a nice break in the South of France , we got one night in Liverpool !!! LOL .
Will let you know how it goes tomorrow .
Hugs,
Jill xx
Member
Posts: 183
Registered: ‎22-05-2014

Re: Angiosarcoma

Hi Jill

I'm really pleased that the wait is nearly over, and hope all goes well tomorrow.

 

I have just got back from a holiday in the country - I didn't realise how much I needed one until I was there!

 

Take care and let us know how you get on.

Emxx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Great news , have appointment tomorrow to see surgeon and find out results from MDT meeting today . Fingers crossed .

Hope everyone else is keeping well .
Hugs,
Jill xx
Member
Posts: 8
Registered: ‎06-06-2015

Re: Angiosarcoma

All good to hear! Sending you all the best thoughts Smiley Happy
Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Thank you for your care and concern Eileen , however I AM being treated by a specialist sarcoma team , in a specialist cancer centre and not just a breast cancer care team in an ordinary hospital . They already know that I have secondary angiosarcoma as this is my second op . I am waiting , not for a diagnosis , but a follow up to see if they have clear margins etc . and follow up treatment plans . I was told the path report would take 2/3 weeks , but was just hoping it would be quicker .They are discussing my case on Monday in the MDT meeting .
I do not need a family member to advocate for me thank you , as I am quite capable of fighting my own battles , in fact I much prefer to be on my own when going to consultations and appointments . My husband takes me to the hospital , but I do not let him come in with me . I really prefer to be on my own . I am quite capable of questioning consultants and oncologists about my treatments and have done so all along , I am actually quite feisty when I need to be LOL .
I have visited your site , although I don't wish to join ( as I mentioned before ) as it is an open one , and have made contact with another UK member so far , which I am sure will be interesting .
Jill
Member
Posts: 8
Registered: ‎06-06-2015

Re: Angiosarcoma

That time frame for biopsy report is unconscionable. I will use our AS Facebook site to search out UK members being treated for angiosarcoma. I will get their emails if you like or you can friend them on FB and private message them. Please please have a family member advocate for you if you are uncomfortable speaking up. I am a nurse of 41 years and it is a shame but folks need to hold their doctors accountable or find better doctors! Secondary AS of the breast isn't like a regular breast cancer. You need answers and options ASAP. I will help connect you if you like. If not, I understand but keep me and our group in mind.❤️
Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Got my letter to say follow up appointment with path results etc is on the 29th !! I can't believe it means yet another whole week to wait !! You would think they would try and give you the news as soon as possible ...I had my op on the 4th June , so it will have taken the whole month to get back to me !!! Am really fed up and depressed with it all !!
Hope everyone else is doing well .
Hugs,
Jill x
Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Went back to the ward on Friday afternoon and they finally took my drain out , hurrah . So much better without it , feel I can actually go out into the real world a bit now . Was really housebound whilst that was in place !!
Still waiting for my results appointment , my lovely breast cancer nurse said my case is down to discuss at the MDT meeting on the 22nd , so will hopefully be soon after that !! The waiting and not knowing is always the worst part of this !!
Hope everyone else is OK .
Hugs,
Jill x
Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

[ Edited ]
Hi Em ,

Only problem is I can't remember if I was doing anything good . LOL . My lovely hubby says he found me in bed looking at my chest ....or lack of it , asking why I had dressings on it ????? Weird to have such a blank patch in the memory banks ....

Our local hospital does have cancer charity centre , that does alternative therapies etc , and my GP 's practice does relaxation , trouble is getting there whilst you feel grot !! Plus can't drive for six weeks , after my mastectomy . Hopefully by the time I can drive again I won't need it all so much . although I did use my GP's relaxation class , before all this started and hope to go back to that again soon .

Hope you are keeping well and doing OK?
Hugs,
Jill x
Member
Posts: 183
Registered: ‎22-05-2014

Re: Angiosarcoma

Hi Jill,

Really sorry to read about your bout of amnesia. That must have been shocking! Fingers crossed they are correct and it won't happen again.

I hope you weren't doing anything really fun on Monday morning as it would be a shame not to remember that Smiley Happy

I also hope you are recovering well after the op. I know my local hospital has connections to a charity that offers services to cancer patients such as massage and aromatherapy, with the aim of reducing stress and promoting relaxation - maybe you have one near you?

Take care, Emxx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Thanks Eileen , I will look into the private messaging . The Royal Marsden is in London , and I live at the other end of the country .... in the north of England in Yorkshire . However Leeds has also got a brand new specialist cancer centre , called the Bexley Wing , at St James University Hospital , which is why the sarcoma team is based here , so I'm sure I am in very good hands . Just a b****y awful disease as you say !!
Hugs,
Jill x
Member
Posts: 8
Registered: ‎06-06-2015

Re: Angiosarcoma

Whoops I forgot, many members that come on our site, meet up with other members who have similar diagnoses and experiences and then they private message each other. I totally understand your hesitancy to open post! we even have some physicians who specialize in angiosarcoma as members! We earn business with this beast of a disease! 😎
Member
Posts: 8
Registered: ‎06-06-2015

Re: Angiosarcoma

I understand. Many folks just come on to get the ideas and feedback from others. We have many members from the UK. I know there are some very good doctors left treated some of our members very successfully at Royal Marsden. Not sure how far you are from there. ❤️❤️
Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

[ Edited ]
Hi Eileen ,

I am being treated by a specialist sarcoma team in Leeds , as my local hospital didn't have one . I had my second mastectomy and WLX of recurrence in my scar on Thursday , so am now at home with a drain in my wound and waiting for my next set of pathology results and follow up appointment to come through . When they have those , I guess I will find out more . I had a CT scan on Wed before my operation , and was told that at the moment there is no further spread , thank goodness .
I am not sure about joining the FB site , as it is open , and I really don't want to inflict all the misery and pain on my friends , but I will certainly keep looking at it . It is also very difficult being in another country , where drugs , and treatment are very different . As our health treatment is totally free , we can really only go with what the surgeons and oncologists offer or suggest . It is not possible to request treatments that they don't have on offer or are not willing to fund . But I have downloaded all the PDFs and will read up what they say , so that I can discuss things with my sarcoma team . It will be interesting to hear what they have to say .
Thank you so much for all your love and concern , it really means a lot to me .
Hugs,
Jill x