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Angiosarcoma

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Member

Re: Angiosarcoma

Well , going through scanxiety again or to be correct biopxiety !!! Beware long post .... LOL 

 

I was concerned about some marks on my back , so rang my oncologist , who has always said the rads have an entrance and exit point ie.on your back . Unfortunately only saw his registrar , who said he thought it was nothing to worry about .

 

A couple of weeks later on the 27th July , I had my annual check up with my breast surgeon , so mentioned it again ....he said he  thought it it was nothing to worry about either , but would do a punch biopsy to put my mind at rest and draw a line under it . 

 

After a couple of mix ups over clinic appointments , turned up , but no results !!  I saw him last week 24th August and he explained that the results said it was not sarcoma related , but they were not happy about them,  so were passing them on to Dermatology and will see me again in 4 weeks after they come back and they have another MDT meeting . 

 

So another 4 weeks of anxious waiting to find out what they might be ..... just needed to get this off my chest ...what is left of it . LOL . 

 

Hope everyone else is coping well with treaments etc. 

Hugs,

Jill xxx

Member

Re: Angiosarcoma

Hi Lyndsey , 

 

So sorry to take such a time to reply , I don’t visit the boards as often as I used to . I really hope the biopsy came back clear and your pregnancy is progressing well . 

My bruising certainly got worse with time and progressed to very red /purple lumps and lesions ..... I don’t know if everyone presents with the same symptoms . When it metasticised to my right breast , I just had a painful lump and NO bruising . 

 

Really hope things have turned out well for you , please let me know how you are doing .

Love and hugs ,

Jill xxx

Member

Re: Angiosarcoma

Hi Jill, I have been looking everywhere for info on this and have found hardly any! Basically I am waiting for results from a biopsy I had on Monday, but I wanted to ask that if I had this radiation induced angiosarcoma would the bruising come and go? For example in January 2017 I came out in some weird bruising went to breast clinic had ultrasound all ok was sent happily on my way (I was pregnant at the time unfortunately I miscarried) fast forward 18 months and this bruising reappears on my boob once again, quite severe not painful just strange I am once again pregnant anyway went to breast clinic had ultrasound that was all ok then my consultant decided to do this biopsy but the thing is the bruising has pretty much Gone again now? Surely if I had this it wouldn’t disappear but would stay and progressively get worse? Sorry for waffling on.

Lyndsey xx
Member

Re: Angiosarcoma

Hi Skye , 

So sorry to take so long to reply , but I haven’t visited this site for a while ! 

I am really sorry to hear of your mum’s diagnosis , her symptoms sound similar to mine . It all started with a bruise , which did not heal and turned to purple lumps and spots. 

Luckily my breast surgeon was on the ball and asked for a skin punch biopsy which confirmed the AS !! 

Things will have moved on for your mum by now , so hope she is coping with her treatment and the CT scan showed no mets .

Do keep

in touch and let me know how things are .

Hugs,

Jill xx

Member

Re: Angiosarcoma

Hi Jill,

 

Thank you for posting your story. My mother has recently been diganosed with a high grade angiosarcoma in the breast. She was diganosed with breast cancer in 2005 and had chemo and readiotherpy, after several biposy's, monograms, it was only until she has deep biopsy's that they have now said it's a rare form of cancer. 

 

She first started noticing a bruse on the surface of the breast and developed into a red, purple rash with red pimples. The doctors also said that it was nothing to worry about! She was subcribed creams and antiobotics, but it never cured it and only got worse. She has now had this for 9 months. We are having a PET scan on Saturday to see if the cancer has spread anywhere else in the body.

 

We have been through such a long process and I am worried what her prognosis.

 

How are you now?

 

Best,

Skye

Community Champion

Re: Angiosarcoma

Lavendersblue

 

I didnt know tat4tit but I know that she was an amazing support to so many ladies on here whilst battling so hard herself, Thoughts with her family at this time and as you say Fly high Tat x

Member

Re: Angiosarcoma

It is with greatest sadness that I have to report that this hideous disease has claimed another victim . 

 

Sadly tat4tit lost her battle with Angiosarcoma last month . Many of you will have been supported by her wonderful sense of humour and wit on these boards , I know I was . Will miss her so much .

 

Fly high Tat . FUAS .

 

 

Hugs, xxx

Community Champion

Re: Angiosarcoma

Congrats Jill

Always like to hear positive news from you, given that you only got this because of treatment. Seems so drastically unfair. Keep well my dear xxxx  ps hope your husband's doing ok now too

Member

Re: Angiosarcoma

Hi Ali49,

 

I had breast cancer in 2008 , wide local excision , followed by 6 months chemo and 3 weeks rads , plus 5 years Arimidex as treatment . Then 5 years later in 2014 I found a bruise on my treated breast , mammogram and ultrasound said no probs ( so wrong) but luckily my consultant was on the ball and had a skin punch biopsy done . I was then diagnosed with radiation induced Angiosarcoma , an aggrsssive cancer of the lining of the blood vessels , caused by the radiaton treatment. Very rare , only 1% of folks develop this , but it is growing with the use of more breast conserving treatments .When the main treatment was mastectomy , it was unknown .  

 

I had a radical mastectomy in Jan 2015 , but it metasticised to my right breast within three months , so in June 2015 had a second mastectomy . It is so rare I have to be treated by a specialist sarcoma team ,  most medical staff have never even heard of it , let alone treated a case .  I have the regular chest x-rays because the next expected mets would be in my lungs !!! I have been clear for 1 year and 5 months now , so hoping it continues . 

 

Hope you are keeping well . 

 

Hugs ,

Jill 

 

 

 

 

Member

Re: Angiosarcoma

Fantastic news, Jill! I am so happy that you have been stable for so long. Long may it continue. You are amazing! xxx
Member

Re: Angiosarcoma

Hi Jill, hope you get good results and have been clear for over a year. Can I ask why you say rads caused it?
Member

Re: Angiosarcoma

Had my four monthly chest x-ray and check up with the oncologist on Monday . He was pleased with the look of my scars and said they looked good to him  , which was great . 

 

It is now almost  two years since I was diagnosed on Christmas Eve 2014 , after a terrible period of recurrence and mets ,  I have been stable for 1 year and 5 months , so he has moved me on to six monthly x-rays and check ups , which is fine by me as it means fewer rads for my body to have to handle and rads caused all this in the first place !!! 

 

I mentioned that I have a swollen and very painful finger ( stupidly worried about bone mets ) so he was really lovely and said he thought it was only osteoarthritis , but would have it x-rayed with my chest to put my mind at rest . So just need to wait for the results now .

 

Hope everyone else is keeping well and coping with treatments and side effects .

 

Hugs,

Jill xxxx

Member

Re: Angiosarcoma

Thanks Bibi , it was a great relief !! He has been my rock , whilst I have been through so many cancer treatments , breast , thyroid and now Angiosarcoma , really don't know what I would do without him . 

 

Hope you are keeping well , and coping .

 

Hugs, Jill xx

 

Community Champion

Re: Angiosarcoma

Wow great news Jill.  Keep well xx

Member

Re: Angiosarcoma

Just keeping my thread alive , so that this awful disease remains prominent and people are aware of it !! 

 

Good news after my hubby's CT scan , NO cancer to be seen !!! Yeh !! However he does have a small pulmonary embolism , which they presume has broken away from the larger clot in his leg !! Hopefully the blood thinning drugs will sort both of these in time . Meanwhile he continues to impersonate the Moulin Rouge dancers in his black stockings !!! 

 

Hope everyyone is keeping well and coping with treatments .

 

Hugs ,

Jill xxxx

Member

Re: Angiosarcoma

Well my OH has had his appointment at the Clot Clinic and was told as his clot is unexplained he will have a full CT scan as it could be caused by an undiagnosed cancer !!! 

 

So back on the scanxiety treadmill . Wonder if we will ever get off ? 

 

Hope everyone else is keeping well and able to enjoy the BH tomorrow .

 

Hugs,

Jill xxxx

Member

Re: Angiosarcoma

It is actually called the VTE Clinic Tat , just my sense of humour renamed it the ' Clot Clinic ' . LOL. The hospital rang on Monday to say he has an appointment  on Thursday 18th . Not within the said two weeks , but at least he has an appointment . 

 

Things went quite well on Saturday , well,  as well as could be expected . Saw the new Breast Consultant , who was really nice and sounded as if he knew what was what . Said scan showed it was an ecapsulated haematoma , which meant that the fluid could no longer be reabsorbed into the body , but just became solid forming a hard lump . 

Said normally they would operate to remove , but that as mine was so large and covered such a wide area , he was reluctant to do this as he felt they would have difficulty removing it completely and I could end up in a worse situation , with more swelling etc !!! I could see his point , and am reluctant to have further surgery in case I might need it for the AS later on ( who knows with this bum disease ) . 

I did say I was concerned that AS could develop in that area and he said he would see me again in 3 months to monitor everything closely . So it was the best outcome I could have hoped for really , even though it means  I have to lump my lump !!! 

 

Have you any news on your results yet ? Good luck with the Camp on Saturday , hope you have a great time .

 

Hugs ,

Jill xxxx

 

 

Member

Re: Angiosarcoma

How did your review go on Saturday, Jill?  Any answers re your non-fluid filled, 'is it or isn't it' haematoma??

 

I hope your hubby finally has an appointment for the 'Clot' clinic? That name would be the subject of much ribbing in our house Smiley Wink

 

Know the feeling of falling between two stools re support, Jill.  The BCN assigned to me was hopeless; in fairness to her she'd never had a primary AS patient before so didn't know how to support me, but she didn't try very hard either!  It is such an extra burden having to work out who to contact for answers or being flipped back and forth between departments.  I had a problem after my surgery with the breast surgeon clearly trying to make sure he was the lead for my care, but I raised it with my sarcoma consultant and he apologised and said they would be sorting out their protocol for cooperation with the breast unit.  Apparently they work very well with the orthopaedic hospital for bone sarcomas but hadn't sorted cooperation with the breast unit.  Lovely to be the guinea ig for that one.  Not!! xxx

 

 

 

 

Member

Re: Angiosarcoma

 

Oh good grief Tat , they are certainly making you wait !! It is so stressful waiing for these scans , but the wait for the results is far worse . Hopefully they won't make you wait too long for those .... fingers crossed . 

 

Weirdly enough , I never had a personal sarcoma CNS during my initial treatment and mx !! There was a sarcoma nurse tel number , but I never met her , or had much contact apart from informing me of appontments . Then when I had the recurrence in my scar and mets in the other breast , I was given a breast CNS , she was great and talked to my hubby and I after the diagnosis etc. and sorted out my CT scan info , and I was able to email her etc. with my concerns .

 

Then I received a letter , saying as I was moving on with my treatment ( ???? ) she would no longer be my main point of contact !! I think it was a standard breast letter and she presumed I was having chemo and rads . My original surgeon was head of the breast unit as well as the sarcoma team , he has now retired and I seem to have fallen between two stools . My oncologist is the sarcoma onc , but I am still having follow up appointments in the breast unit , although the sarcoma lead is no longer a part of that dept. New one is a plastic surgeon , confused ???? I certainly am . LOL .

 

Poor hubby still has no appointment at the " Clot Clinic " , hope it will turn up next week . 

 

Meanwhile I have a 6 month review  on Sat with the breast unit ......  so will report back on what they say about my ultrasound scan , that said my " haematoma " no longer consists of fluid !!! Sigh !!! 

 

Take care everyone ,

Hugs ,

Jill xx

Community Champion

Re: Angiosarcoma

Corks! Naked cycling sounds positively dangerous,  as well as totally unhygienic.  Wonder if it's bring your own saddle ha ha xx

Member

Re: Angiosarcoma

Hi girls.  So, a month after finding out there was something dodgy on my scans I have an MRI appt for 8th August.  I guess I need to get used to taking up my place on the conveyor belt and awaiting next steps without panicking.  So easy to say and an absolute breeze to do.  Not!!  Had a wonderful lunch with old school friends today, so all loved up and relaxed Smiley Happy

 

Glad there's something happening for your hubby, Jill, and hope the appt comes through really quickly.  Why don't you have a sarcoma CNS now?? 

 

I get naturism in your own home and, possibly, garden if it's not overlooked, but being a rudie nudie in public is beyond my understanding andCYCLING nude is just weird!  I do hope they weren't rental bikes.... Smiley Wink  Euuwww!

Member

Re: Angiosarcoma

Yes waiting seems to always be the name of the game Bibi. Don't they realse how stressful it all is ?? The longest time I've had to wait was for my skin biopsies ( on some sun damaged skin ) 8 weeks !!! The consultant told me , you will hear from us in 3/8 weeks . It was 8 weeks to the day !! I always go on the theory that no news is good news !!! 

 

Hopefully the pills will be working in the meantime .... fingers crossed !!! 

 

Hugs,

Jill xxx

Community Champion

Re: Angiosarcoma

Hi Jill pleased to hear they have identified the clot & he has started treatment.  Two weeks seems a long time to wait under the circs .. you don't realise what the NHS cash shortage is like until you're in the system.  I still can't understand why people have to wait 2-3 weeks for mammo results when we know it can be done same day.  You just think, work late & catch up with your backlog guys! xx

Member

Re: Angiosarcoma

Oh my goodness Tat , no wonder you are annoyed , it all seems to be taking an age . Hopefully your CNS can chivvy them along for you . I know mine was brilliant at getting things sorted , when I had one . 

 

So sorry to hear about your friend , that is really devastating news to be given . As Bibi says it is amazing  how much asbestos was  about in old buildings .

 

Hubby had his scan on Tuesday and has a small clot near his groin , will get appointment for the " Clot Clinic " in the next two weeks and must keep  taking the blood thinners until then . Hopefully as it is small it will not be too problematic and the drugs will do their stuff !!!  So just pottering and taking it gently until we know more !!! 

 

I always remember camping in France ,on the west coast one year , with friends and their children . We were driving down a road when we passed these nudists riding their bicycles along , the kids were in hysterics at the rudie nudies !!! LOL .

 

Hope everyone has a better week .

 

Hugs ,

Jill xxxx 

 

 

Community Champion

Re: Angiosarcoma

Yes, certainly does seem an awfully long time to leave you in limbo. Glad you're managing to divert yourself with your Two go Mad in Dorset week.  You certainly hit the jackpot of English weather! Terribly sorry to hear about your friend.  What devastating news.  You think mesothelioma is a thing of the past, but I certainly worked in Victorian hospitals in my youth, which were later demolished & found to have asbestos in.  I would think some teachers & anyone else in the public sector could have been exposed.  Dreadful.  Another example of humans creating something toxic & life threatening to themselves. Jill hope HB is ok. xx

Member

Re: Angiosarcoma

Oh Jill, what a worry Smiley Sad Really hoping it's a DVT and the blood thinners sort it. And then I think it's time you caught a break and life was kind to you both!

 

Filey was one of our most favourite places as a family when we lived in Yorkshire, so many happy hours on that beach and rock pooling!  We once saw the lifeboat being launched and our son was so excited he talked about nothing else for weeks!

 

We've been decorating and helping my mother in law and husband's aunt with their gardens, but today was a day off and we went to Tyneham village.  It was cleared in 1943 so the allies could prepare for the Normandy landings and the locals were told they could return after the war, but the govt decided to keep it within the military firing ranges and it has never been lived in since.  We walked to the beach at Wolbarrow in the sea mist and fried on the way back in full sun.  Late pub lunch (no after effects!) on the way home and a lovely day.  

 

Rudie nudie is a term well used in my family, Bibi Smiley Wink

 

No biopsy appt yet, but my CNS is on it.  The radiographers need to review the MRI & CT images to decide if they can biopsy it, but I'm still annoyed it's all taking so long.

 

Another bit of bad news yesterday that a friend of ours has been dx with mesothelioma - lung cancer from exposure to asbestos.  Incurable and inoperable.  We've known this couple for nearly 30 years and it's utterly devastating Smiley Sad  FUAS and FU cancer.  

Community Champion

Re: Angiosarcoma

Oh dear Jill v.sorry to hear that.  Just what you both don't need, lots more hospital appts.  Fingers crossed it isn't too serious. Tat, your Dorset house sounds lovely & you two parading into the rudey nudey area (as my sister used to call it when she was younger) made me snigger.  Congrats on your anniversary xx

Member

Re: Angiosarcoma

Well today has not been a good day !! Poor hubby had blood test that confirms he almost certainly has a DVT in his right leg !!! On blood thinners and now his turn to wait for an ultrasound scan !!! We are both really upset and worried about this !! If not DVT , then blood test results could mean heart failure or cancer , so bum choices whatever !!! 

 

Hope everyone else has had a better day .

Hugs ,

Jill xxx

Member

Re: Angiosarcoma

Hi Kerri , 

Congratulations on your 25th Wedding Anniversary , what a shame that you were sick after your special meal !!

Did you get any joy from your CNS today ? Was she able to chase up the biopsy date for you .Really hope it is very soon, so that you can get some answers .

 

I have my ultra sound scan tomorrow , but am not sure what it will accomplish . At least it will hopefully establish what the lump is ( and prove it is NOT my ribs ) even if they decide they can't do anything about it now it is a year old  !!!  Happy birthday dear lump... Just wish they had aspirated it when it first appeared , instead of worrying about infection . 

 

Your cottage in Dorset sounds great . I love the sea and a beach to walk on . In fact we went to Filey today and did just that . I love looking for "stuff " as we walk along and fill my pockets . Hubby thinks I am bonkers !! Thought I was even more bonkers when I bought miniscule ammonites for my dolls' house . LOL 

 

How did the Sarcoma Support group go ? Hope it was really successful .

 

Please keep in touch and let me know how the biopsies go.......

 

Hugs,

Jill .xxx

 

 

 

Member

Re: Angiosarcoma

Hi Jill.  I read this post after your post on the FB page. I'm so pleased you got your holiday and had a good time and hoping you have many, many more Smiley Happy

 

I still have no appt for the biopsy 12 days after appt with Onc.  Will call my CNS tomorrow.  Today is our 25th wedding anniversary and we had a lovely pub meal yesterday evening, but I was terribly sick between 2 and 5 am, so today was a bit of an anticlimax!  We're at our cottage in Dorset - my 'happy place' (if you discount the local pub!).  We had a rental property and decided to sell it after my dx and buy a little cottage near my mother in law.  We spent yesterday at the coast, accidentally walking into the naturist end of Ringstead beach.....very odd, and good for a giggle, but the rest was good for the soul Smiley Happy

 

Last weekend we threw a big party for our kids who turned 18 and 21 this year.  We had flair bartenders which was fun, but it was a lot of work, including the breakfast (well, brunch) for my son's uni mates who stayed over.     So it was lovely to escape down here with just our furry baby to look after!  Lots more walking and beaches planned - really helps me with all the uncertainty at the moment and generally.

 

Not long now until your holiday, Bibi!  Hope you have a wonderful family time together.  It's easy to underestimate how much our dx and treatment affects our families and I'm sure you are all ready for some R&R together xx

Member

Re: Angiosarcoma

Know all about cancelling hols Bibi !! Over the last few years seem to have done that a few times . Hope you have a great time in September . 

 

Hugs,

Jill xxx

 

Community Champion

Re: Angiosarcoma

Glad someone is listening to you Jill.  Also pleased you enjoyed your hol.  We had to cancel our hols last year & my poor HB is on his knees having gone without a hol for 15 months.  We are going in Sept & can't wait xx

Member

Re: Angiosarcoma

Just posting an update to help my keep my thread alive and the word Angiosarcoma in focus . 

 

Firstly we got to Portugal ( complete with travel insurance ) and had a great time . The apartment was great , the weather brill and I enjoyed the freedom of being flat and fabulous on the beach . It was great to chill and try to forget all the medical issues !! 

 

I saw my oncologist , for my 4 monthly check up and x-ray today and talked about my haematoma , lump , whatever !!! I have been told in turn it is my ribs , scar tissue , body fat , haematoma . It has been aspirated under ultrasound and washed out under anaesthetic , but has refilled both times . 

 

He looked at it , prodded and poked and importantly listened to me . Result is that he has arranged for me to have an ultrasound . I am really pleased as at least it means they will look at it again and may come to some conclusion as to what they can do with it . After a year I am sooooo fed up of it !!! 

 

Hope every one else is keeping well . 

Hugs,

Jill xxx 

 

Member

Re: Angiosarcoma

Thanks for the understanding Tat , have decided I am going to just try and chill for the moment ,go to Portugal enjoy some sunshine and then when I get back will decide what I am going to do . 

 

One plan is to look at my records through my GP and see what has been recorded officially , as opposed to being  told verbally . The other thing I want to do is talk to my Oncologist and see what is actually shown on my x-rays and CT scans ..... when I am armed with info , I will decide the next steps . 

 

Hope you have had a good Easter with all the family . 

 

Have just been to see " The Railway Children " , the film version of the play in the York Railway Museum . Thought it was brilliant and really enjoyed it . 

 

Hugs, Jill xxxx

Member

Re: Angiosarcoma

Rant away, Jill, I'd be doing the same in those circumstances!  I know how much you were hoping this appointment might give answers and some relief after all this time.  Do you have a sarcoma CNS?  Mine are great at finding ways through the hospital bureaucracy and happily sort out appointments etc.  Another route might be to get another referral through your GP?  Big hug xx

Member

Re: Angiosarcoma

Pardon me whilst I rant !!!! Grrrrrrrrrrrrrrrrrrr

 

Went for my appointment today with the breast surgeon . Lovely old surgeon retired at Christmas , so got a registrar today , never seen me before or treated me . Looks at my haematoma/ swelling and promptly tells me it is just scar tissue !!! I try to explain that previous ultrasounds show that it is not .... he says blood clots do not last this long withouy being absorbed , so must just be scar tissue !!!! It is like a large , fat sausage and is about 6/8 inches long running vertically down from  my mx scar , along my ribs .....no surgery in this area so how can it be scar tissue ?? 

 

It has been drained once , and also washed out under a general anaesthetic , when the surgeon said she had never seen any thing like it before and it was very unusual  ....it  was flat on both occasions after the draining , before it refilled . It may be hardened blood/ fluid  etc , but I told him I did not believe it was scar tissue !!  He still maintained it was !!! I was so angry and frustrated I could have cried . 

 

The only plus to the whole sorry episode was that he did say they would keep an eye on it , as the angiosarcoma could recurr anywhere , and they would check it again in 6 months .

 

Anyway enough of my moans .... well done Tat on finishing your marathon of rads ..... you must be sooo relieved . Large glass of something called for to celebrate , I think .

Big hugs ,

Jill .xxxx

Highlighted
Member

Re: Angiosarcoma

I'm soooo pleased you have a holiday booked!  I love Portugal (especially the food!) and you so deserve a relaxing break.  Hope you can leave it all behind and just enjoy yourselves for a while.  We're off to Devon for a long weekend after Easter - not quite Portugal, but a start to getting our lives back!!

 

Your haematoma sounds awful - I dont know anything about the management and treatment of them, but there has to be something else they can try?  So glad you only have to wait until Monday for your appointment and, hopefully, a plan.  Do post an update, please?  The FB groups have been a bit sad recently so I love to hear good news Smiley Wink

 

Gentle hugs, Jill.  Tat xx

Member

Re: Angiosarcoma

Hi Tat ,

That is just the best,  most fantastic news !! Smiley HappyPlus just one more rads on Monday and you are cooked ...yeh !! Glad they have a good observation plan set up for you too . That is brilliant , and very reassuring .

 

I have an appointment with the surgeon on Monday . Original appointment was for 27th April ( right in the middle of holiday in Portugal ) typical !! So rang to ask about the chance of a cancellation and got one on Monday . Yeh !! Will see what he has to say about my haematoma , if anything . I expect "  just have to put up with it " due to risk of infection / sepsis etc . but at least will feel better that someone has looked at it. Then roll on Portugal and some sunshine . Smiley Happy

 

Here's to many more NEDs for us both . 

Hugs,

Jill xxxxx

 

Member

Re: Angiosarcoma

Hi Jill, CT scan shows NED Smiley Happy  In 8 weeks' time, once my chest wall has settled after rads, I will have an MRI and then 3  monthly CT scans for at least 2 years.  It feels so good to have that first NED under my belt.  Here's to many more for both of us Smiley Happy  Tat  xx

Member

Re: Angiosarcoma

Second class post?  Unbelievable!!  Utterly fab result, though, when the letter eventually arrived Smiley Wink

 

The fear of recurrence or mets is the biggest issue, without a doubt.  I am accessing some psychological support - mindfulness is definitely an option I will explore, anything that helps to live with AS is worth looking into.  We are also making some changes to our life to do more of the things we enjoy - I'm determined to live rather than wait, but it's a struggle some days.

 

I have 5 more rads to go!!  There was a time when I doubted I could complete the course, but I know I will now.   It's been gruelling, but I gave up trying to be brave and started taking regular painkillers around the half way mark and, with the PolyMem dressing, that made it seem less daunting.  I am very tired, but my OH says I put up less of a fight now when he bundles me into the car!  I have a 'stash' of PolyMem to keep me going for after rads - so excited for a week Monday when I don't have to go to plan my day around going to the hospital!!

 

I'm seeing my onc on Friday and I hope the CT results are in.  Although she called it a baseline scan I can't help but worry...!  The plan is 3 monthly CTs going forward.

 

Hope you've booked that holiday to Portugal!  Some vino verde and grilled sardines would hit the spot nicely Smiley Happy

 

Stay in touch and report in on your adventures and NEDs.  Hugs back at you and FUAS, of course!! xxx

 

 

Member

Re: Angiosarcoma

Well, my letter from the oncologist came this morning ( second class post would you believe ??  ) and my chest x-ray was clear ....yeh !!! No sign of my angiosarcoma , so NED for the time being . That makes 8 months and 11 days so far . Counting ....moi ???? LOL . 

 

Whilst being delighted , I am also hugely apprehensive of the future recurrences that may happen . Such a bum disease that leaves you terrified of its shadow . Have being going to a series of Mindfulness classes , which do help one to appreciate the present and fear the future less . 

 

Tat , you must be nearing the finish line this week , hope the skin is holding up and the pain bearable . I went on " cooking " for quite a while afterwards , so keep up the moisturising and skin care . Have they any further treatments on the cards for you , or is it a regime of scans , x-rays and follow up appointments ? Am rooting for you all the way .... let me know how things evolve ....and oh yes ...FUAS !!! 

 

Hugs,

Jill xx

Member

Re: Angiosarcoma

Hi Tat ,

 

One more down ...yeh !! Only 11 to go now , say it quickly though . LOL . 

 

Hope the CT scan goes well , and doesn't find anything lurking !!  They injected the contrast when I had my last one , but I had to sit and drink pints of water ..... yuk !! I actually like water and drink quite a lot normally , but all that in set space of time made me feel quite sick ....not to mention wanting to wee , when you're not allowed to 😳. 

 

Am waiting to see the x-ray results , then hopefully booking a trip to Portugal . We never got away last year due to AS and operations , then to crown it all our Mobile Home was washed away in the floods in the south of France in October 2015 . Bummer !!! Still it could have been worse , at least we weren't there at the time .Friends spent several hours sitting on the roof of theirs , in the rain and the dark

, before being winched up into a rescue helicopter !!! 

 

Hope you manage to get away too and can chill and relax .... FUAS as they say indeed !! 

 

Hugs,

Jill xxx

Member

Re: Angiosarcoma

I know what you mean about side stepping the question and the 'everyone's different' comment could have come straight from my CNS's mouth!  I'm not criticising them as they are working on limited data too, but it's not much of a help for us trying to work out how to live with this awful cancer....  

 

Rad number 22 today after a day off yesterday while the machine was serviced.  The dressings are nothing short of miraculous!  I've carried on taking anti inflammatories for the swelling, but no other pain relief needed.  My energy levels have been near normal the past couple of days, possibly because I'm not in pain and am sleeping better.  All in all, I'm much more hopeful of finishing the rads now.  My onc wants a baseline CT scan so next Weds will be a long day with rads follwed by 2 hours in the CT unit chugging down more contrast liquid.  Good job I don't have a life outside of cancer at the moment!!   Excited to see signs of spring now though and planning to make up for lost time this summer Smiley Happy  Hope you manage to get away too.  Big hug and, as the Americans on the AS FB page say, FUAS!! xxx

 

 

Member

Re: Angiosarcoma

Hi Tat ,

 

So good  to hear from you , have been following your progress on other boards and am sorry to hear that your skin is so sore . 21/ 33 !!!  The pain must be awful , can really sympathise with you .

 

I only had 15 sessions and that was bad enough . Because  my boob was a tad on the generous side I had awful blisters on the underside , and  they gave me some great dressings  that were intended for ulcers !! Your rads are going straight on to your scar , I can't begin to imagine the pain !!  So glad that they have given you some dressings  that are really soothing . Hope the pain meds are good too !! 

 

Yeh , I am hoping it means " if " rather than  " when  " too . They changed my oncologist to the lung sarcoma specialist and he keeps inferring this is the favourite site for mets . I don't like to keep mentioning that mine has  already behaved out of character by metasticising into my other breast !!! LOL . I have asked them outright ( several times ) what they think my prognosis is , but they always sidestep the question , by saying everyone is different !! One reads such depressing statistics on the old tinterweb  , 70 % chance of recurrence within two years ( already hit that stat ) and only 30% chance of making five years disease free !! Bummer . Oh well ....onwards and upwards !!

 

Will let you know what results of x-ray are ....and keep following your progress .

 

Hugs,

Jill xxx

 

 

Member

Re: Angiosarcoma

Hi Jill.  Good to see you posting, hope you are feeling well and managing to enjoy yourself despite the constant background anxiety.

 

When you say 'they expect it to metastasise to the lungs' I hope that means IF it metastasises the most likely place is the lungs???  I still haven't been given any view on prognosis despite asking direct questions and that is extremely hard to live with.  Sounds like your team are a bit more open about all the possibilities.  I'd definitely prefer that, rather than filling in the gaps myself with the limited published data I've found!

 

I am due rad number 21/33 today.  It's hard going, very sore, very tired and not a little fed up!  I was munching a lot of painkillers and seriously questioning whether I could continue rads until they gave me some PolyMem dressings yesterday.  The relief from soreness/itching/pain has given me hope I can finish the course and the tiredness will mean I put up less of a struggle being bundled into the car to rads!!

 

Please let us know when you have the results of your chest x-ray?    Tat x♥x  

Member

Re: Angiosarcoma

Been for my three monthly check up and chest x- ray today. Have to wait for the results of the x-ray , but am hoping all will be clear .....fingers crossed .

 

They expect my angiosarcoma to metasticise into my lungs , so my follow up appointments are all with a lung sarcoma oncologist now !!! He will see me every four months for a check up and chest x-ray , for the next two years , then every six months if we make it that far !!! 

 

Still waiting for a follow up appointment re my haematoma , rang up and was told it will probably be April !!! That two months is certainly elastic !!!

 

Hope everyone is keeping well .

 

Hugs,

Jill xxxx

Member

Re: Angiosarcoma

Hi Sharon ,

 

Thank you for your lovely kind words , it is really good to hear from you here. I follow everyone's progress in the " Marching Together " thread . Glad you are enjoying your new job and looking forward to a nice break . Lets hope we all have a better year than last !! 

 

Have my three monthly check up with the oncologist on the 29th , so am keeping my fingers crossed he doesn't find any problems , so that we too can hopefully have a break in the sun .. yeh !!!  

 

Last time we had a holiday was in Sept 2014 , during which I hoped that the bruise on my left boob would heal up in time for my yearly mammogram in Oct !!!  If only I had known then what I know now !!! 

 

Lots of love and hugs and take care of you too. xxx

Jill xxx

 

 

Member

Re: Angiosarcoma

Hi Jill Smiley Happy

 

Just nipped in to see how you are doing and I'm so pleased to hear you're NED at the moment, although I know the fear and worry are always present.  I just can't believe how positive you manage to be throughout all of this, you really are an amazing woman. I'm sending you every single good wish and positive thought in my possession for a happy and healthy year.

 

Lots of love and take very good care of yourself

xx

Sharon

Member

Re: Angiosarcoma

I'm really sorry that you also have this bum disease Tat , but it is comforting to be able to talk to someone else who understands what it is !! 

 

I keep this thread going to try and keep some awareness of this disease out there . I live in hope that folks might be more aware of the symptoms and not ignore them in their ignorance like I did . It is rare , but sadly on the increase !!

 

Here's to an AS free 2016 for both of us .

 

Hugs,

Jill xxx

Member

Re: Angiosarcoma

I'm really sorry that you also have this bum disease Tat , but it is comforting to be able to talk to someone else who understands what it is !! 

 

I keep this thread going to try and keep some awareness of this disease out there . I live in hope that folks might be more aware of the symptoms and not ignore them in their ignorance like I did . It is rare , but sadly on the increase !!

 

Here's to an AS free 2016 for both of us .

 

Hugs,

Jill xxx