Just celebrated five years clear – DCIS, minimal 5m invasive, PR and ER+++ Had double mastectomy, reconstruction radiotherapy and tamoxifen.
We have moved to Houston USA with my husbands work two years ago – my father had just died and both mum and I had had BC. So new start etc. Kids love it here and they had been through so much. Finally this year I have gone back to work and things were beginning to look up. Last Friday went to my oncologist here and got a lump checked above my collar bone. She sent me for a biopsy. Today she told me it is BC again and Im having a PET tomorrow. I don’t know what to think – could it have gone everywhere?? Didn’t tamoxifen work?? I even had my ovaries removed to reduce estrogen levels!! I am fit I run and feel very well.
Has anyone had this?? I am at such a loss what to think anymore!!
Hi abbey
sorry to hear about ur recurrence you must be devastated. I have just started chemo due to progression at the supraclav nodes. I felt a slight swelling there back in nov but a recent ct scan has confirmed that there are several small but suspect nodes around my collarbone.
There are several treatment options- I guess if u just have a single affected node + ur scans are otherwise clear, then they may operate to remove the offender? Rads + or chemo are other options but these are unlikely to be curative.
Do let us know how u get on with the pet scan-I will be keeping everything crossed for u
tina x
Hi Abbey!
I’m another supraclavacular (?) “girl” - though I had several lymph mets - some in the chain under the arm leading up to collar bone. I was diagnosed a year ago after original dx Dec07 and have had 5 months taxol chemo and three weeks rads. Last scan, last week, came back NED! I’m obviously pleased, but as Tina above says, it is very uncertain whether this is a permanent cure - I am trying not to think of this aspect - living in the moment and definitely in the land of “De Nial!” They can operate, I think, though mine were classed as inoperable - maybe different in the US? I’m er+ too, though only slightly, and about to start letrazole soon, after ovaries zapped with rads in Nov.(Have been on tamox.for 2 1/2 years)
It must be a particularly sickening dx for you after 5 years clear and the tamox.probably stopping working and I’m sorry you have had to join us in Stage 4. Hope my post will give you a glimmer of some light at the end of the tunnel.
Let us know how you get on, Sarahxxx
Thanks Sarah and Tina for your comments.
Im still reeling from the horror of it all!! PET was fine apart from small area on sternum. They want to do Chemo and rads. My oncologist was very positive that the prognosis is good. She was emphasising that I am fit healthy etc and really this has taken five years to come back. However at the moment I feel very low as I had to tell the kids. They watched my mum go through chemo, me having surgery and rads and my Dad dying - it is so unfair to put them through a horror again!!
The chemo they want to do is Taxotere and Cytoxan - sound horrible!!
Im petrified that Ill be gone in six months!! - sorry I dont mean to be irrational - just still in shock. I want to wait a couple of weeks before I start to sort stuff out but Im worried that I shouldn’t be delaying. Just hope I stand a good chance of being around for a long time!!!
Just been today for a second opinion and now I need to make a decision between going for Taxotere and Cytoxan and then rads or what I was offered today which is upto 20 weekly Taxol then onto FAC for 20 weeks (every three weeks) then rads, then possibly removal of nodes and part of sternum (first oncologist didn’t offer this) Im frantically researching difference between Taxol and Taxotere???
DOn’t know who to go with. The latter option was from MD Anderson a world leading cance hospital - but thier option seems v intense - but if it works - it would be worth it!! I really didn’t like beign tols I should be around in 5 years but 10 was pushing it. He then commented that obviously statistics are open to interpretation!!! However my poor husband was reeling from his bluntness!
This disease has no respect and Im sooo angry about it invading our lives again - Need to start Chemo ASAP - dreading it - but have no choice got to be here for my boys!! Just don’t know which one!!
Hi Abbey!
Sarah here. I can’t really give you an all-round opinion as I had only taxol + rads last year. It was OK to take, though no walk in the park and gave moderate shrinkage of nodes. Rads is what really worked for me, though. It’s good they are considering removal of nodes - I wasn’t offered this, (in fact they said with all the arteries around there and having to go under the bones, it may mean I lost the use of my right arm - maybe you should ask them about this?) - but that is bound to improve your long term prognosis. I’ve read on here somewhere that the cancer hospital you mentioned is world-renowned and tends to go for an agressive approach to mets - aiming for a possible curative outcome - so you seem to be in good hands there!
Btw, your onc. is certainly plain-speaking when it comes to survival times! I have always had a figure of about 7 years in my head when it came to this, but it only pops into my mind in my gloomy/melodramatic moments. Mostly, I try not to think of it and I have certainly never asked my onc. for facts and figures! I wouldn’t have liked being told that either.
Hope you can make the decision which is right for you. I would go for the latter option, but certainly ask about the long-term risks of surgery.
Love, Sarah.
Hi Abbey,
what an awful time you must be going through :(. I know in there is a very slow trend moving towards what Sarah has mentioned - a more aggressive sledge hammer approach at this stage in the hope of going for a possible curative outcome. Certainly the hospital/centre you have been to for that 2nd opinion is world renowned. But it is still a hard choice you are being given and only you cna make it. Like yourself I went the first time round to a 5 year treatment free period and you really do reach a point where you think that maybe it won’t come back - especially with your original dx of dcis etc. But that just shows you how wrong stats are. Remember when someone tells you that you might have 10 years - given that is based on statistics that a large proportion have longer than that.
My first brush with bc was 21 years ago. I have had a few since then! but it spread to my supraclavicular nodes in early part of 2002 and my onc wanted to leave alone because I had already been given several different chemos and he wanted to wait so they had something left in the bag! Then end of 2002 it was found to have spread extensively to my bones.
Have you told your 2nd opinion consultant what the first one was suggesting? Maybe ask him to help you weigh up the pros & cons i.e. why he recommends taking that route. It might help you with a decision.
It all goes to show really how diverse a disease bc is and how unpredictable the outcome. I think any doc that had been around when I was first dx would not have ever thought I would still be here 21 years on so take hope - the treatments are getting better and better and they have far more to offer in the USA that we do back here.
Dawn
xx
Hi abbey
sorry you’re caught between a rock and a hard place, what a horrible position. I think there are two types of taxane: paclitaxel and taxotere, but I’m not sure why we sometimes have one and sometimes the other. My onc told me AC goes with paclitaxel and FEC with taxotere but avoided explaining why he’d chosen the regimen he had.
I had a recurrence 8 months ago, after 5.5years with NED. It had reached my clavicle, but is on the under side rather than above it, so was removed. Still, the suspicion is it’s still there, working its way up, so I’m currently having extensive rads to chest wall, underarm, supraclavicle and neck.
I don’t know which is the better choice for you in terms of treatment but just wanted to offer my support and sympathy. It’s so frightening, especially once you start thinking of your life in such limited terms. Still, treatment improves all the time so don’t lose hope.
Have you checked out the cancer research trials? I know you’re in the US, but it might give you something to ask your onc about? There is one about supraclavical nodes here and some others that sound relevant to you:
xxx Jane
Thank you all so much for your advice and kind words. After much thought and discussion with my family Doc and Doc in UK I have decided to go for the v aggressive option being offered by MDAnderson. Apparently my oncologist is v well known and respected and after listening to the recording I made of our meeting - he sounds quite kind and empathetic. I was so angry yesterday I wasn’t listening properly. Also the hospital is massive and impersonal and full of really ill people and I do not want to be part of it!!!
Anyway went for a long run today and calmed down (at least for a while). I start on Monday -absolutely dreading it - I will be doing this every week until he thinks I can no longer take it! I’m missing my friends and family back home but my mum is here now for a few weeks!
So glad I can talk to you all - you are fabulous support and great inspiration!
Xx