I was dx with primary angiosarcoma in my breast last October, sadly misdiagnosed for 14 months. I had a mx and removal of pectoral muscle 26/11/15 and 33 rads in Feb/March. Sarcomas are aggressive, angiosarcoma especially since it is in the lining of the blood vessels, so I have been on a 3 monthly scan regime many of you would recognise, thoracic and pelvic CT and MRIs. June scans showed a lesion in my liver. The MDT initially recommended an ultrasound guided biopsy, but the liver specialist radiographer was reluctant to try as the lesion was only 9mm and he felt it was a haemangioma. After another month’s wait, I finally had an abdominal MRI on 8th August. Saw onc for results on Friday and there are 4 or 5 ‘enhancing nodules’ in my liver, too many and too randomly placed for surgery. Onc wants to start me on weekly taxol in September when we come back from attending a wedding in Corfu with scans after 3-4 cycles to see how it is working. I am concerned about quality of life on weekly taxol (3 weeks on, one off) having read previous threads on this forum. I have no symptoms and, ironically, have never felt unwell so am nervous of the side effects of of indefinite (if it works) treatment.
I have been offered a PICC line and wonder if I should press for a port? If anyone has any advice, I’d be grateful to hear your experiences. If scans show the taxol is working would it be possible to have a port fitted whilst on chemo?
I have always known my prognosis was poor, but it still hits hard. My son starts work on the Civil Service Graduate Fast Stream in October and my daughter is going to university next month; the thought that I have limited time to help and support them as they spread their wings, may not see them married or meet my grandchildren is all unbelievably painful. I hope you don’t mind me joining you in the secondaries part of the forum. I feel a bit of a cuckoo in the nest as I don’t have sbc, but have always found this forum so helpful on the shared aspects of treatment. There are sarcoma related FB groups, but not with the same kind of ongoing contact and support as you offer one another in this community.
Hi Tat4tit, I didn’t want to read and run so just to say hallo and welcome! I don’t know anything about sarcomas, taxol or picc lines so pretty useless really but I’m sure you will get some knowledgeable replies soon. I’m right with you with your fears for your children, it doesn’t matter how old they are, they are still our babies and we want to share their futures for as long as possible.
I have this silly game which makes me braver, I tell myself that someone in the family has to have cancer, would I rather it was one of my sons…and of course the answer is no! I can bear anything as long as they are happy and safe. Maybe it might work for you…or you can think I’m as mad as a box of frogs!!
Good of luck with your treatments and don’t worry if it’s not the same type of cancer, we are all in the same boat xx
Thank you, Nicky. I know you can always be relied upon for sound advice on treatment options
Sarcomas often don’t respond well to chemo, angiosarcoma especially, and progression free survival rates are dire, so they want to hit it hard. I guess I will have to see how I get on with side effects and see how effective taxol is. I think I’m a bit freaked out because all other sarcoma peeps I know only have taxol as a ‘last resort’ type intervention. I’m not the sort to panic, but all the unknowns and not being able to plan ahead is hard to deal with.
Tat4tit - left you a quick message on “Benchlands” to say FLIP Tat, ref your recent diagnosis. Awww sweetie, I’m soooo sorry, and goes without saying, I’m wishing you WELL again.
I’m struggling to get a more accurate differential diagnosis of liver “cysts” found on a recent ultrasound (2nd one), when the gastro consultant initially wanted me to have a more detailed CT scan of my liver. But due to the lack of someone proficiently adept to cannulate my foot veins to administer the contrast medium, this didn’t happen. Feel the consultant has backtracked, having had a previous ultrasound at GP’s, which also showed abnormalities, and a previous private CT scan which showed abnormalities, all of which was reason for my GP to refer me.Coupled with my previous breast cancer history and continuous symptoms. Am struggling to hold my own and the need to be assertive to finally get/have a clear enough differential diagnosis to allay my fears of secondaries. Have another consultation this coming Friday in a final to attempt to “hack it out” again. Sadly, don’t have anyone to come with me, being on my own, but feel I’m just gonna have to strong, get it all out and stand.
Sincerely wishing you well with your outcome and treatments lovey. Will keep an eye on your posts.
Hello tat4tit
Just thought I would offer you a warm welcome to the secondaries site. I’m so sorry that you have had to pass over the border from primary to secondary but hopefully you will find a lot of support and kindness here to help.
Hopefully the weekly chemo will give the secondaries some welly and a good kick up the rear end !!!
Carolyn xxx
Hi tat4tit…love the name!! Sorry you are having a rough time at the moment but hopefully we can all help you a little. I had weekly taxol and although it dodnt work for me for very long i didnt find it too bad. I got very tired as i seem to do with all chemo’s and as you say, part of this may be the 3 weeks on hopsital visits etc. I just tried to think, if its doing me some good then its worth it…i used to look on it as ‘time ot’…catch up on a book, have lunch etc. I too agree about the children…i have often said on here that that is the hardest part of this didease to accept bt i too have always said ‘rather me than my daughter’. Whatever age they are, its still as hard and heartbreaking. I don’t know anything about portocaths as i was never offered one but i have a line and, although it does need weekly maintenance, i wouldnt want to be without it, especially with weekly taxol.
Please letus know what you decide and how you get on. xx
Thanks for the warm welcome, Carolyn and Stresshead. I’ve been lurking the secondaries forum since my primary dx as I always suspected I would end up with mets, so your shopping habits and cheeriness are already well known to me, Carolyn ;).
Had a very up and down week, back to being angry at the breast consultant who said to me and my husband in July 2014 when I found the lump “I can categorically reassure you you do not have cancer”. Equally annoyed with myself for sticking my head in the sand and not getting a second opinion as the lump grew. A major side effect of a secondary dx for me is a very clean house, so I guess that qualifies as a silver lining!?! I got to cuddle some babies yesterday which was just lovely, especially as I got the date for my first infusion (9th Sept) and using denial as a coping strategy is suddenly a whole lot more difficult!
My parents are back from their hols today and coming over tomorrow, so that will be emotional. Today is a baseline CT thorax, abdo and pelvis, so more cleaning this morning!!
Hope everyone is able to dodge the rain this weekend.
Hiya tat
Think we all dug our head in the sand at sometime and should have listened to our bodies more.
After 11 years clear …I started getting hip pain …thought it old age …went docs fot dx of arthritus, trapped nerve and sciatica over a year wasted before scan dx hip Mets. Looking back …it was my fault as I was busy moving house etc etc and should have been more pro active in asking for scan.
But …once treatment starts you will b able to focus …
Carolyn xxxx
Hi Tat,
I think a lot of us have something we regret when it comes to diagnosis. Ten years ago I mistook the symptoms of Inflammatory Breast Cancer for a benign condition and never saw a doctor for about 4 months after the first symptoms appeared. I also had a bone met misdisgnosed as ‘nothing’ 5 years ago.I thought it seemed too good to be true but was so relieved to hear good news I never questioned it. When I developed bone symptoms last year and was diagnosed with extensive bone mets I was told that I had had mets for 4 years. Luckily, I was on Letrozole for most of that time anyway so the bone mets were actually being treated to a degree but not being monitored. Gradually I’ve stopped feeling angry and stopped blaming myself so much. These are wasteful emotions. Why waste our present by fretting over the past.
By the way, denial is my coping strategy too, as is distraction.(I love box sets and reading) I try to give cancer as little thought as possible and a lot of the time I manage. Good luck with your scan. xxx
PS You can come and clean my house if you like. ?
Sorry to gatecrash this thread , but just seen your post about the MRI results ( I don’t visit the forum as frequently as I used to ) and am really gutted to read that things are worse with the lesions in your liver and they don’t feel that they can operate now. !!! Bummer , bummer , bummer . Bloody Angiosarcoma
Can’t offer any advice on ports or PICC lines , as my chemo ( Epirubicin) was just put into the back of my hand every fortnight , but hope you can get something sorted to make the weekly Taxol easier .
I can only offer virtual hugs and love and support .
Dunno what it is Jill. Yeh could very much be down to “fundings”. Had initial package of scans done privately (at huge cost) whilst I was waiting for the NHS to kick in, because I was naturally concerned that my 3 months of stomach/digestive problems, may be down to secondaries. Coupled with the fact that I’d lost two friends in the last year due to liver 2ndaries that were sadly too far advanced. Private liver CT scan and blood tests showed up abnormalities. GP arranged ultrasound at his practice which also showed abnormalities and quickly referred me to Gastro-ent dept at local hospital because of HIS concern ref previous BC history. I would have initially had to wait TWO months, until someone obviously read my notes more carefully and fast tracked me forward a month.
The Gastro was initially “hot”, booked me in for endoscopy and a more detailed liver scan.
But . . . then due to previously mentioned problems of the radiographers being unable to cannulate a vein in the top of my foot, the Gastroguy had me in for another ultrasound scan with his own radiologist, rather than this CT scan, which again show up cysts, which he feels are benign.
My second BC was initially misdiagnosed by an ultrasound, so it would have gone undiagnosed had my surgeon not been convinced and had them biopsied anyway to give the more accurate +ve diag of BC again.
What “I” don’t understand is why the radiographers aren’t trained to be more proficient in inserting cannulas elsewhere other than in the arms. I surely can’t be the only woman in this town whose had both masts with full lymph node clearance so can’t have needles in either of my arms, them being immuno compromised.
I’ve had 3 ops since, under general with anaesthetic administered in my foot veins and it’s been done by anaesthetists - no prob.
I’m befuddled by it all, and it certainly hasn’t allayed my fears. Doesn’t help that I’m dealing with a hospital which is in a new area, rather than the familiar hosp/specialists and excellent care I received where I used to live.
Sorry to have gone on. I only popped on to say that I meant to give my best and love to “all” of you in my last post, not just Tat4.
Hi ladies, just a quick ‘heads up’ on the cannula/portocath posts.
I had double mast and axillary clearance on right side and node removal on left. I only let them use my left arm for cannulas, blood pressure etc. It is correct thatyou cant have scan dyes through lines bt i always ask the chemo team if they will cannulate me before a scan…theyare so much better than radiographers etc. x
I got you on what you were saying, but I’m neither under a chemo or Onchology team with my current tests with regards to cannulation. And why I said I’m not understanding why Radiographers aren’t trained, given the circs of other women like myself, to be proficiently adept at cannulating the foot or ankle veins.
I have wondered whether I should really be under an Oncho team ref my current stomach/ digestive system probs. Whole thing has proved totally frustrating and not helped by me moving areas so am attending a different hospital to the one that I’ve had all my previous BC surgery/check ups etc. and I felt a “continuity” of treatment.
I’m not convinced that an ultrasound scan isn’t enough to give an accurate differential diagnosis of whether these liver cysts are benign and harmless. Why would the Gastroguy have recommended a more detailed Liver CT scan in the first place, based on my BC history? Prob with me is, I’m in such a low state with a no of other things, that for me to question and stand up to stuff, is a massive difficulty. Can’t be doing with having to deal with problems due to incompetence or inproficiency. Want it sorting properly in the first place, so I can move on from it or have it to deal with, rather than it be left “hanging”. You understand what I mean??
Hi Delli just read your text on here about your liver.I had multiple big lesions show up on mine and even though I had a 20 year history of BC they took me along liver cancer route first then a liver biopsy.So after 3 diff consultants got back to Onc for it being secondary her2 pos BC from primary but chemo plan held back for ages as was my scan .but on my 3 lot of chemo right now.Send me a catchup when you have a pain free spare bit of time X X debs
Hello tat
Glad u had a good holiday before u started the treatment and it all sounds good so far.
When it comes to secondaries I thinks
we are a little more prepared for things !!
Are you cold capping as well? Some of the ladies here are doing well with it although it extends the time in the chemo ward!!
Well hope u keep well …I have no experience of taxol as I had FEC back in 2004 and Chemos have changed.
Xxxx
