Member
Posts: 398
Registered: ‎18-11-2015

Re: Angiosarcoma

Hi Jill, I've just found this thread and part of me wishes I hadn't Smiley Sad  I believe we've 'met' via the Angiosarcoma UK FB page... not the group anyone wants to belong to, as you said!  I feel very emotional reading what you've been through in the past year, especially, but on top of bc and thyroid cancer and yet you appear so 'together' and upbeat.  I'm sure you have your moments/days/weeks, but when I grow up (got to happen soon, I'm already 51!) I want to be just like you Smiley Wink  

I had my mx on the 26th and am doing OK physically, even been on a few walks with my husband and our lab (followed by lengthy naps!) which helps a lot.  I'm currently in the dreaded waiting phase for pathology results but received an appointment letter yesterday and will learn my fate on Monday 14th.  My emotional state is a different matter - I'm pretty well emotionally incontinent at the moment, see-sawing between feeling really positive or in complete denial or planning my funeral!  I have masses of support, but how can you put into words how alone you feel facing AS? My children both have important years academically and I feel so angry that this (long delayed) diagnosis of primary AS has come now when they have enough on their minds already.  And then the knowledge that the worry will never completely go because of the nature of AS... 

I feel a little better for having acknowledged my fears.  Trying to keep things upbeat at home for my daughter's sake is hard at times (my son is away at uni so somewhat cushioned from the day to day happenings) so it is a relief to be able to let it all hang out, so to speak, on here.

Have you now had the results of your most recent x-ray, Jill? 
Kerri xx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Hi Catokitty ,

 

Thank you so much for your lovely care and concern , I really appreciate how wonderfully supportive everyone on this forum is . Still to get the results of my chest x-Ray , but I guess they are fine as no one has got back to me urgently . I am still NED after four months , which is brilliant . Keeping my fingers crossed for longer !! 

 

Hope you and everyone else is keeping well .

 

Hugs,

Jill xxx 

Member
Posts: 178
Registered: ‎19-02-2015

Re: Angiosarcoma

I just wanted to say I hope your appointment went well today. You have been through such a lot and I really admire your fortitude. Hope it was good news today x

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Seems an age since I last posted !! Consultant said he did not want to operate on my haematoma as he felt my chest had taken some hammer this year , two mastectomies and two WLE in my scar !! So best left alone . I agreed I wasn't keen on more surgery , but have to say it is so uncomfortable I wish they would aspirate it !! 

 

He will see me again on the 8th Dec , but I don't think anything will have changed .

 

Go to see the oncologist on Monday , 3 monthly check up and chest X-Ray !! Feeling a tad apprehensive , in case he finds any recurrence ( he found it last time ) . 

 

Hope everyone else is keeping well in this gloomy November weather . Can't believe it is almost a year since my diagnosis last Christmas !! 

 

Hugs,

Jill xx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Thanks for the hugs Nenya , things much the same at the moment , back to see the consultant in a couple of weeks , so will see how things go then . 

How are you keeping ? Hope things are good for you .

 

Hugs,

Jill x

Member
Posts: 88
Registered: ‎04-02-2015

Re: Angiosarcoma

Oh Jill, sorry I've not been on for ages and seen the wars you've been through. Sending hugs and hope this is you on the way up now. Xxxxxxxx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Hi Rose ,

 

Really good to hear from you , I do still follow the " Marching " group  even though I don't post in it , but feel as if I have been on your journeys with you all , we all seemed to start about the same time  . So sorry to hear that you are so down due to the Tamoxifen , that is horrid . Hope things pick up and improve for you soon . I got fed up of saying I was fine , when I wasn't . No one really seems to want to hear that you're not do they ?  Now I just say I am improving , slowly !!! 

 

I think I need a whole bloomin volume of the Lancet to myself  LOL . If something is rare or unusual you can bet your bottom dollar that I will collect it and add it to my list .....  

 

Will let you know what happens at my next check up !! 

 

Take care of yourself lovely lady .

Hugs,

Jill xx 

Member
Posts: 429
Registered: ‎29-10-2014

Re: Angiosarcoma

Crikey, Jill. If it ain't one thing...!

Very happy to see the NED, hopefully they will be able to sort out this latest development.

Are you being written up in the medical journals yet?

All well this end, just fed-up of trying to be a little ray of sunshine through the Tamo fog. It'll pass.

I have everything crossed for good news at your next check up

xxxx

 

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Well back to the clinic yesterday  to have the haematoma below my scar looked at . The surgeon said that when they did my last WLE they actually went into the haematoma and emptied it , cleaned it out and put a drain in , so was really surprised to see it refilled. Said it was very unusual . I seem to collect the rare and the unusual !! 

 

Part of the problem is that they have pulled so much of my flesh upwards to avoid skin grafts , they have disturbed the layers of tissue below the skin which have filled with blood . I had an ultrasound scan and they said it had formed pockets , so they felt that it was now too difficult to aspirate !! 

 

Am going back in three weeks for them to see it it has improved !! 

 

Hope everyone else is doing better .

Hugs,

Jill xx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Hi Em ,

 

So sorry to hear that you are having such awful problems with the blood clot and enlarged heart , that must be so worrying for you . Hope they can find a solution for you very soon . 

 

My BCN is trying to sort out some help from the physio , she has been great at sorting things out , but not heard anything yet . I did get an appointment with the Lymphoedema Clinic last week who were great and after measuring my arms and hands etc decided I now have lymphoedema in my right hand and arm after my latest mastectomy . They provided me with compression gloves and sleeves , which was great and will arrange for me to have some MLD in a couple of months . She also gave me a wide bandage to wrap round my chest to see if it would help the swelling on my scars . 

 

Hope they can help you out when you go on the 12th and ease some of your problems .

 

Look after yourself and take care,

Hugs,

Jill xxx 

Member
Posts: 183
Registered: ‎22-05-2014

Re: Angiosarcoma

Hi Jill

I'm really pleased it went well, and although I know you need to stay vigilent I hope that life can at least get back to being a bit more 'normal' (whatever that is!).

 

My appointment at St Georges has been brought forward to the 12th, although it has kind of been overshadowed now by haematology and cardiology appointments - my blood clot still hasn't gone, and a recent ecg is showing that my heart is enlarged. After my WLE I decided not to go ahead with radiotherapy, not least because I was worried about the possibility of angiosarcoma given that I already had lymphedema. Now with everything else I am more relieved than ever that I decided against it!

 

I hope your physio comes through soon and that it really helps. Stay well Jill Smiley Happy

Best wishes, Emxx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Went to see the oncologist yesterday and he confirmed that as my histology report for the WLE showed clear margins and CT scan was clear, then for the moment I am NED . Will have 3 monthly check ups and chest x-Rays as a follow up .
However as it recurred within three months and also metasticised into my other breast , I need to be very vigilant in looking for signs of recurrence . So good news in some respect but still worrying .
Still waiting for news on physio for cording though!!!
Hope everyone is keeping well .
Hugs,
Jill xxx
Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Thanks Em , We didn't do much over the weekend , but are having a little trip out tomorrow ....so that will be good . Haven't thought too much about a holiday in case I had to have more surgery ....but if all goes well with the oncologist on 27th , hopefully might even be able to make some plans .

How is your lymphoedema ? I have developed cording in my right armpit and am concerned that my whole arm is tender and sore now ...with some swelling round my hand !!! Waiting to hear about physio !!!
Keep well ...
Hugs,Jill xx
Member
Posts: 183
Registered: ‎22-05-2014

Re: Angiosarcoma

That really is good news Jill!

I'm so pleased for you and your family. I hope there is some serious celebrating in your house this weekend Smiley Happy

Take care,

Emxx

Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Thank you Petal and Sheena , the support you give is wonderful .I am so grateful .
Hugs,
Jillxx
Member
Posts: 23
Registered: ‎18-03-2015

Re: Angiosarcoma

That is fantastic news Jill, so pleased for you. Xx
Member
Posts: 757
Registered: ‎01-06-2015

Re: Angiosarcoma

Hi Jill
lovely to see some good news for you x all the best for 27th
Sheena x
Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Back to see surgeon for results today , and the great news that he got clear margins this time !! Have to remain vigilant for recurrence as it is so aggressive and have apppointment with Oncologist on 27th so will see what he says , but for the meantime this is really good news . Best we could hope for .

Hope everyone else is keeping well .
Hugs,
Jill xx
Member
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

Had my drain removed yesterday as it was down to 20 ml a day , am just hoping that it has done the trick as far as my haematoma is concerned . Am feeling a bit battered and bruised today and both MX scars feel tight and pulling . So taking it easy with some painkillers !!

Hope everyone else is keeping well and pain free .
Hugs,
Jill xx
Member
Posts: 183
Registered: ‎22-05-2014

Re: Angiosarcoma

Hi Jill

Thanks for posting. I'm glad you are ok and hope that they get those clear margins this time. Would be great if this surgery can clear up any lingering problems from the first one too.

Wishing you a speedy recovery.

Emxx