Good news/bad news/in a new minority
Good news/bad news/in a new minority First of all so many thanks to all of you who have written such lovely messages here and on the other site and sent me pms (now where are those contact buttons BCC?)
The good news is that my scans showed no evidence of spread to my lungs, liver or bones and I can’t quite believe my incredible good luck.
The bad news is that my regional recurrence (not local…regional…its different) is quite widespread in chest wall and superclavicular nodes. My oncologist who is inluenced by US stageing categories calls this a Stage 4 recurrence because though it can be managed it is unlikely to go into complete remission. He called it the best end of Stage 4. CancerBacup stageing would put me in a Stage 3c category.
Have been doing rapid internet searches and finding even less on regional recurrences than on triple negatives. Apparently 2% of recurrences are regional.
I am still waiting confirmation of er, pr her2 pathology but they are nearly 100% certain its absolutely the same kind of cancer as last time so as triple negative my options are limited. My onc is recommending a combination of xeloda (capectibane) and navelbine (vinorilbine), though I am changing my treatment centre as I no longer live full time in London and new onc might suggest one of these only.
It is amazing how we all change our perspectives on what is good news. For me this was the best possible outome from yesterday and I am over the moon…but this is still in the scheme of things ‘very serious’. Its ironic that I have always to some extent regarded Stage 3/Stage 4 as a kind of continuum (as NICE does in its guidelines on managing advanced breast cancer), and now I end up with a recurrence whose stageing is itself debateable (and regulars will know that very famous other Jane who got this…!! Has this been sent to test my cheescake indulgence?)
So whose club am I in? I know this is less serious than mets in lungs, liver, bones, but it ain’t a little local spread either. My onc is talking about keeping me on xeloda as a maintenance for as long as it works (rather as arimidex would be used for er+)
Well these are the facts. How am I? Not sure? I feel that once again I’ve had a reprieve…but I also know the goalposts have changed and could change yet again very quickly. But today I feel better than yesterday and I’m not going to start treatment for a couple of weeks…so it really is a case of enjoying today…even though its wet.
Thanks to everyone again.
Jane
Hi Jane Hi Jane,
Glad to hear the good news. No spread - wonderful.
Sorry about the bad news although, as we’ve said before, some breast cancers have cells that can get from the initial breast site into the lymphatic system but are then unable to pass into the bloodstream. I think what I’m trying to say is that spread to lungs, liver and bones is possible but by no means inevitable.
Of course what really worries me is that you’ll give up on the cheesecake and I shall have to disagree with complementary medicine without a particularly supportive voice of reason. But that is another conversation for another time.
Enjoy the next couple of weeks. Here in Scotland it may be raining but the sun keeps breaking through.
I shall go and search out the rainbow.
Best wishes,
Sue
Glad to hear your OK Glad to hear your news of no spread, I understand what you mean about perspectives I think they are changed completely after diagnosis. Enjoy the next 2 weeks and I wish you good luck with your treatment.
Keep strong
Lisa
Hi Jane I appreciate that you must be feeling very much between the devil and the deep blue sea. I am just posting a link here which I read yesterday (posted by Musa Mayer on bcmets) which details trials and treatments involving xeloda (capecitabine) in combination with other drugs, for different types of breast cancer.
"This is an excellent and exhaustive review by Debu Tripathy, now at
UT Southwestern, of cominations of studies, and recent, open and
planned clinical trials in metastatic breast cancer that use
capecitabine (Xeloda) in combination with a whole spectrum of new and existing drugs.
Capecitabine in Combination with Novel Targeted Agents in the
Management of Metastatic Breast Cancer: Underlying Rationale and
Results of Clinical Trials "
I hope this may be of some informative use to you and wish you all the best.
Jenny
x
Hello Jane, I received your complete email and have now replied. Please get back to me if you think any of what I’ve mentioned would be helpful. Belinda…xx
Well - what a relief that it hasn’t spread; and what a bind that there is recurrence. I had vinolrebine for recurrence and it seems to have knocked it back effectively. I had one of those rare nasty side-effect s, but at least it worked.
Best wishes.
Hi Jane
I have been following your posts and delighted to hear that there is no spead. However I understand where your coming from with the recurrent.
Very best of luck with the treatment, you hang on in there.
Love Geraldine 45
Hi Jane,
I’m delighted to hear your good news. It is completly bizarre though how your interpretation of what is good changes with this disease. Best of luck with your treatment.
Carla x
Jane… I sense you will deal with this in your stoic way , become expert in regional disease and continue to be a much valued resource for all of us who appreciate your non alarmist, factual posts.
Very best of luck with the treatment to come.
Cherry
Hello Jane
Delighted to hear that there’s no spread but sorry that the recurrence is regional.
Very best of luck with the treatment.
Best wishes
Anthi
Thanks again for messages and pms and bits of hard information…thanks Jennywren for the useful link.
I already had three nights booked in Krakow next week so am doing that, and on impulse having looked at UK weather this afternoon my partner and I are flying off tomorrow for 2 nights sunshine.
I’ve overdosed on the phone, the computer and messages. Will be back.
Jane
Hi Jane
Thanks for posting an update.
That’s great news that you have no further spread and at least you now know what you are dealing with and can get your head round what you are facing. I do know of someone who had Xeooda and tolerated it very well (she did get sore hands and feet towards the end of the course).
Enjoy the sunshine and cheesecake with double cream I hope!
Take care
Big hug from Becks
xxxxxxxxxxx
Jane the awful waiting is over and now you know what you are dealing with.
Enjoy your breaks you deserve them. Bring us some sunshine back.
Best wishes
Kim
Enjoy more than the cheesecake! Hi Jane.
You certainly have been through a roller-coaster of emotions.
Take plenty of rest, some gentle exercise, good food and drink. Definitely the best medicine at this time!
All the best.
Pollyanna
Hi Jane,
PHEW! What a relief for you. Hope you enjoy your break in the sun and very best wishes to you for when you start your treatment.
Di
Jane Hi Jane
Pleased to hear youve had the best news you could have had under the circumstances…sounds crazy congratulating you,but you know what i mean…
Sounds very similar to my regional spread…although as ive said they think mine couldve been at the sime time as diagnosis…have they mentioned any kind of surgery??they were talking about possibly removeing some more tissue off the chest wall if the chemo didnt get rid…
Glad to hear your having a little break away…you deserve it.
Julie xx
Thinking of you Jane.Enjoy your break and come back with your usual fighting spirit!
Just another point… … I remember. The ‘platinum’ chemos (cisplatin, carboplatin) are supposed to be very effective for triple neg breast cancer.
Jenny
x
bon voyage I was very pleased to read your (relatively) good news - its true that the frame of reference keeps shifting
Holidays/trips are an excellent idea. Have a great time, Jane, I am sure there will be many more trips in the future.
Sarah