Several years ago, when I participated in the forums, a big complaint was that nobody who was a long term survivor ever posted, so I post once a year around the time of my diagnosis seven years ago. I had a bad prognosis (loads of nodes, er-negative, did not respond to the first round of chemo I had before surgery). My oncologist once described me as his highest risk her2-positive patient and he had loads of patients. The only positive spin that my cancer nurse could come up with was that my cancer was so aggressive that I wouldn’t have long to wait to see if it came back!
So, some people, even very high risk people defy the odds. My one bit of advice is to try not to gain too much weight, eat sensibly and get exercise (even a bit of walking helps to reduce radiation-related fatigue). The best evidence is that these sorts of things help to improve overall quality of life and reduce overall death from all causes in women who have had breast cancer. Also, if you are chemopausal or on aromatase inhibitors ask your oncologist about a bone scan and bone health generally. In particular, especially if you have given up dairy, make sure that you take calcium supplements with vitamin D. I know a few cancer survivors who haven’t paid enough attention to their overall health and have ended up with big avoidable health problems like diabetes or debilitating osteoporosis. Breast cancer patients and oncologists are so busy fighting the cancer they sometimes forget that their patients get other things.
Woo-hoo !!! I hope you continue posting annually for many, many years yet.
Excellent post - it gives so much hope to others I’m sure. I always like to post when I’ve had a checkup, especially if it’s good news. I’m 3 yrs down the line and although I have bone mets and my life has changed so much, I’m loving it and feel generally very well. They didn’t give me a lot of hope getting this far either but hey, I’m still here and plan to stick around for a long time yet. Next checkup is 12th Nov with surgeon and then a month later with onc so I hope I can put happy posts on here.
Sorry I’ve hijacked this a bit but well done you!!
Great to hear from you again Christine.
Excellent advice too.
As someone with osteoporosis at 45 I really applaud you for highlighting that issue. Weight bearing exercise is essential to help beef up those bones and I am deeply attached to my baby trampoline. (The one occasion when being titless is a real plus!)
I watched my grandmother die of a broken spine - osteoporosis is no joke.
Hear from you next year - all the best.
Wonderful post Christine, it’s fantastic that you have beaten the odds - and some excellent advice. I just wanted to add that I have been taking a calcium and Vit D supplement, and having just seen a nutritionist I was advised to change to a supplement that also included magnesium. She also recommended I get my Vit D levels checked to make sure I was taking the right dose. Vit D does seem to be very important in BC, so I will be taking that advice. x
xwelcomex - completely agree - it’s wonderful to hear of people with a poor prognosis doing so well. And I wonder if the converse of what Christine’s onc said is also true - if you have a very aggressive cancer and it DOESN’T return soon, does that then mean you have a much higher chance of long term survival? I certainly hope so. x
Finty - yes I think that is the case. There was a small retrospective study done, looking at reccurence rates over a priod of ten years, and whether the original cancer was Her2 +ve or -ve. These women had not had herceptin, as this was long before it was available for primary cancers. The results showed that for Her2 -ve cancers, there was a low but fairly constant number of reccurences over each of the ten years. But for Her2+ve cancers, there was a much higher reccurence rate in the first three years, but none after. ie when more aggressive cancers come back they tend to come back earlier. The study was not big enough to say that Her2 +ve cancers would never come back after three years, but it’s still very encouraging. I believe now, with herceptin, that pushes the three years back a bit, as the herceptin sometimes just delays the reccurence rather than prevents it. I think the timescale now is more like two years after finishing herceptin, so depending on the exact treatment regime, that will take you to something like 3 1/2 to 4 years post dx (for me it’s Dec 2 - which will be 3 years 9 months from mx)
Christine may have something to say about this, as she was always so very knowledgable
Hi, Just thought I’d add to this post as I’m 13 years post first dx. (stage 1)Had lumpectomy followed by rads but was dx again 11 months later so had mastectomy. 8 years on dx again but this time 15/16+nodes Prognosis was poor and BC nurse said that ‘I had real battle ahead’ nothing positive to say at all. Had FEC and Tax followed by 3 weeks rads then dx with bone mets 18 months ago - now have them in spine, hips,pelvis and skull, been on capecitabine for 12 months - but - hey I’M STILL HERE AND FEELING GOOD!! - friends say I look better than I did a year ago! I agree with Christine - I eat healthily, try to exercise (can’t do everything I’d like to do due to mets so have had to give up badminton), and I’ve managed to keep the weight off! I’ve also tried to keep positive and I’m sure this has helped although I know it’s hard and I do have my bad days. I just try to carry on as normal as much as possible and forget my cancer - 4 years ago I thought that it would be my last Christmas.
So, I hope this helps with those who’ve had a recent dx and who are worried about their prognosis.
May I add mine as well then. My tn was so aggressive it grew from 1cm to 2.4cm in the 3wks leading to my op.It was only in one node but had so much vascular invasion it was off the ricther scale - my oncologists didnt expect me to get though chemo without it reappearing somewhere else, and after chemo I was given a 35% chance of making 5yrs. When I’d initally asked what I could do to lessen my chances of it returning I was told to do everything in moderation and enjoy my life, but before I was signed off last year I was told I’d done all the right things and if it were now I’d be told to go on a very low fat diet (I went dairy free) and to keep my weight down and exercise (I took up powerwalking)I too am seven years down the line this Christmas xx
How fantastic to read these posts…Christine,its lovely of you to keep us updated on your progress, you were quite a regular poster
when i first came on the forums. I was diagnosed July 2006, so im 4 years 3months post diangnosis, i had a very poor prognosis, all my lymphs were involved plus spread around collarbone, so very scared indeed…I still have wobbly days, when i think, how much longer before my luck runs out, but maybe it wont!..fingers and everything crossed…
Great to hear from you -and that another year has passed! Juliet is just coming up to 6 years now (and would agree totally with your advice!). Me, I am just so glad that she had the opportunity for herceptin.
HI Christine
Lots of congratulations, and great that you post regularly. I still dip in from time to time (although one or two threads lately began to annoy me)
I am 6.5 years post diagnosis, and seem to have adopted a similar strategy to you and particularly Josyemarie - avoid diary, try to keep the weight off, and exercise (for me yoga and walking). Otherwise just trying to follow a generally healthy lifestyle. I am big fan of treats so nothing is totally forbidden!
I will post again when I reach the 7 year milestone
Sarah
lovely to hear you are all doing so well,gives us all hope. can i ask why you have given up dairy? i was told soya was a no no
ive gone organic with milk and rarely have eggs
It is great to see you post with some good news to share and some wise advice. I hope you continue to defy your pessimistic onc for many many years to come and I for one look forward to seeing your posts.
Lots of Love xxx
Dear Lincslady.
I gave up dairy after reading Jane Plant’s book ‘Your Life In Your Hands’ while on chemo. It just made sense to me. Being triple neg I felt I’d nothing to loose and plenty to gain if there was anything in it! I do have soya in my tea and on the occasional cereal.
