Highlighted
Member
Posts: 462
Registered: ‎01-05-2012

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
Posts: 462
Registered: ‎01-05-2012

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
Posts: 47
Registered: ‎26-06-2014

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
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

[ Edited ]

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
Posts: 1
Registered: ‎04-01-2018

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
Posts: 9,820
Registered: ‎16-11-2016

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
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

[ Edited ]

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
Posts: 1,056
Registered: ‎18-07-2015

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
Posts: 462
Registered: ‎01-05-2012

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
Posts: 429
Registered: ‎29-10-2014

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
Posts: 1,224
Registered: ‎17-09-2016

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
Posts: 462
Registered: ‎01-05-2012

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
Posts: 462
Registered: ‎01-05-2012

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
Posts: 1,056
Registered: ‎18-07-2015

Re: Angiosarcoma

Wow great news Jill.  Keep well xx

Member
Posts: 462
Registered: ‎01-05-2012

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
Posts: 462
Registered: ‎01-05-2012

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
Posts: 462
Registered: ‎01-05-2012

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
Posts: 398
Registered: ‎18-11-2015

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
Posts: 462
Registered: ‎01-05-2012

Re: Angiosarcoma

[ Edited ]

 

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
Posts: 1,056
Registered: ‎18-07-2015

Re: Angiosarcoma

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