Angiosarcoma

[tat4tit]

You've been through the year from hell, Jill.  Four lots of surgery, a neverending heap of stress and anxiety and yet you are NED; you give me hope against this dreadful disease.  

Here's to 2016 without the hateful angiosarcoma in it.  And you may be flat, but you are most definitely fabulous, girl!

Hugs, Tat xx

[lavendersblue]

Well a year ago today I was in hospital having a radical MX for my secondary, radiation induced angiosarcoma . I remember being devastated with the AS diagnosis  and convinced it was a death sentance . 

I was even more convinced that was the case , when only three months later it recurred in my mx scar and metasticised to my other breast !! And yet here I am against all odds , had to have  two wlx for recurrence and two mx , but all things considered I am fine , flat and doing well . Hope 2016 is kinder to us all.

Hugs,

Jill xx

[lavendersblue]

Shall have a bit of a poignant day tomorrow  K , remembering the anniversary of my diagnosis , and all the fear and dread that came with it !! Knew the news was bad when the surgeon came in with the BC nurse and she took hold of my hand !!! 

Then OH  and I are going to have a nice quiet Christmas Day ,  stuffing ourselves ...or should that be the turkey ? We plan to over eat , then veg out in front of some moldy old film on the telly .. surrounded by chox and pressies !!!  

At one point earlier on this year , I wasn't even sure I would make it to Christmas , so to be NED and here to enjoy it all is brilliant . 

Hope all you wonderful  folk  have a really lovely  Christmas and a healthy New Year . 

Hugs,

Jill xxx

[tat4tit]

Just wanted to say I hope you have something lovely planned for tomorrow, Jill, that doesn't involve hospitals or AS in any way, and your Christmas is full of fun and laughter with the people who mean the most to you.

K xxx

[lavendersblue]

Hi Rose , 

Good to hear from you again , hope your problems with your neck are no worse . Am relieved to be NED at the moment and am keeping fingers crossed it continues . 

Twas my birhday last week , so been out to celebrate both things !!! Not good for the diet though , LOL. We went to the Box Tree in Ilkley , very yummy . Cost three arms and a leg , but who cares !! 

Hope you have a great Christmas and an even better 2016 . 

Hugs ,

Jill xxxxxx

[tat4tit]

Thanks, Lizzy :). That makes sense - happy to wait for a PM button if it keeps trolls off the forum 🙂
T4T x

[Lizzy_BCC]

Hi Tat4tit, 

I am sorry you have been having problems accessing private messenger.

We usually wait for relatively new users to post a few posts in the forum before they can access PM. This is just to avoid spam messaging.

It looks as though there was a bit of a technical problem with allowing you access but I have now fixed this. You should now be able to see the private messages icon in the top right hand of the screen. I hope this helps!

If you or any other users have any other problems I will be happy to help 🙂 Just email moderator@breastcancercare.org.uk . 

Best wishes, 

Lizzy 

Digital Community Assistant 

[Rosemaryanne]

HI
I have also lost the PM function somewhere. I know , careless of me, but I've lost worse before now! Jill, I'm so happy to see that you are still NED and the chest xrays were clear. You little wonder woman, you! I realise that it's impossible to escape the fear of return but I hope you are enjoying this brilliant news!
Much love
Rose xx

[tat4tit]

I'm so glad your x-ray came back clear, Jill.  One in the eye for AS!  It seems that when you noticed the AS in your irradiated breast it all happened fairly quickly, so 5 months NED is definitely something to celebrate.  Just thought how ridiculous that would sound to a non-AS person!!!

I have requested a copy of my histopathology report, but have to go through 'access to patient records' which is a bit of a drag.  I've already done that for the misdiagnosing hospital and the diagnosing tertiary hospital, so this should be the last one from the treating hospital!  What a palaver!  My surgeon suggested they would monitor me via CT scans, maybe I should speak to the sarcoma team to find out the risks/benefits of x-ray vs CT... My sarcoma nurse is lovely and really proactive, but I find I have to follow up a lot more with the BCNs and see a different one every time I am there.

I'm still learning to find my way around this forum and can't see why you couldn't PM me.  I've checked all my settings, but haven't found the key yet.....  I only joined in November so I don't know what it was like before, but I wouldn't put it in the 'blindingly obvious' category for ease of use 😉  It's really kind of you to offer your email address 🙂 This forum is a lifeline to express thoughts I really daren't share with anyone else and wonderfully supportive.  

 K xx

[lavendersblue]

Hi Kerri ,

Sorry it has taken me so long to get back to you , but I have had problems with my password for this site ....the new format is awful ...same old story ..take something that works and change it , but not for the better !!!

Yes,  I am the same Jill from the AS UK FB group , thank you for all your lovely comments , but believe me I have my moments ..LOL . I have been lucky and had some psychological support through my GP and that has resulted in having some  ' Mindfulness '  therapy , which does help.

I do know only too well the see saw of emotional states , and yes I have also been down the planning my own funeral road !! I have been NED for 5 months and can't quite believe it ...keep thinking they must have made a mistake and it is still lurking in my scar tissue .!!! Then I have times when I feel it really  has gone and I am on the road to recovery .....it is a very hard disease to live with because it is so aggressive and treatment seems limited .

I got my results for the chest x-ray last week  and thankfully it was clear .

Glad to hear that you are recovering from your mx and managing to get out for walks . But it is hard ....especially when you have the long wait for your results . It is always difficult the waiting period. One thing I would urge you do do when you go for the results,  is to ask for a copy of the histology/pathology  report. It is useful I think,  to be able to see it all written down later , when you can digest it more.

I will send you a PM and give you my email , so that if you want you can rant and let it all out , or if you prefer just do it here .

Take care , hugs,

Jill xxxxx

[tat4tit]

Hi Jill, I've just found this thread and part of me wishes I hadn't 😞  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 😉  

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

[lavendersblue]

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 

[catokitty]

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

[lavendersblue]

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

[lavendersblue]

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

[Nenya]

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

[lavendersblue]

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 

[Rosemaryanne]

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

[lavendersblue]

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

[lavendersblue]

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 

[emilysss]

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 🙂

Best wishes, Emxx

[lavendersblue]

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

[lavendersblue]

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

[emilysss]

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 🙂

Take care,

Emxx

[lavendersblue]

Thank you Petal and Sheena , the support you give is wonderful .I am so grateful .
Hugs,
Jillxx

[Petal123]

That is fantastic news Jill, so pleased for you. Xx

[missmore]

Hi Jill
lovely to see some good news for you x all the best for 27th
Sheena x

[lavendersblue]

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

[lavendersblue]

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

[emilysss]

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

[lavendersblue]

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

[lavendersblue]

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

[emilysss]

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 🙂

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 😞 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

[lavendersblue]

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

[emilysss]

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 🙂

Take care,

Emxx

[lavendersblue]

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

[lavendersblue]

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

[emilysss]

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

[lavendersblue]

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

[Ejollinee]

All good to hear! Sending you all the best thoughts 🙂

[lavendersblue]

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

[Ejollinee]

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.❤️

[lavendersblue]

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

[lavendersblue]

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

[lavendersblue]

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

[emilysss]

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 🙂

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

[lavendersblue]

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

[Ejollinee]

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! 😎

[Ejollinee]

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. ❤️❤️

[lavendersblue]

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