I suppose I should have posted on the anniversary of my diagnosis, but life is busy. I just came back in to post about CRUK’s discovery of 10 different types of breast cancer (since we always used to speculate about the numbers of types).
My prognosis was so bad that the doctors wouldn’t even give me my specific prognosis. The best my Macmillan nurse could do was to say that my cancer was so aggressive that if I last three years I would probably survive (unfortunately, I realised that this meant that I wasn’t expected to make three years). I was my oncologist’s highest risk her2 positive patient (which is why he moved heaven and earth to help me get herceptin) and yet I have defied my rather dire prognosis and have not had a recurrence of the cancer.
As a long-term survivor, I would stress the importance of looking after yourself. Cancer treatments are getting better and I know a few former breast cancer patients who seem to have survived breast cancer only to get diabetes from having put on too much weight or develop osteoporosis from the treatments. Healthy eating, exercise and making sure to get enough calcium and vitamin D can help to avoid these problems.
It is so good to see your username back on the forum especially with your news of 8 1/2 years of NED - what a massive lift for everyone with a Her2+ dx.
I know you don’t post regularly any more but do hope you continue to stay well and I look forward to seeing you posting this time next year! Will be watching and waiting!
Thank you ChristineMH. Being a relatively new HER 2+ this is great to hear! Especially as I have just had to answer the very awkward question from my teenagers “How long are you likely to live…”!!
A VERY difficult question to answer…
Thanks for sharing your story it really is uplifting especially for those of us that are HER2+, I unfortunately have secondaries but I believe its the herceptin thats keeping me stable. Hope you don’t mind me asking but are you still on herceptin? only I’m going to be on it forever and whilst I am truly grateful for the miracle that is herceptin I worry about the SE from taking it over long periods. Also can I ask is there anything else apart from the healthy eating/exercise and supplements you mentioned that might also help? do you eat diary? do you drink green organic veg juice? any further advice would be most appreciated.
Sending you well wishes
love and light
Sarahlouise xx
Thank you for posting Christine MH .
I find personal histories like yours very encouraging.
I too have very aggressive HER2 pos Breast cancer.
The Oncologist gave me a tape of the initial consultation and says the word aggressive 18 times and puts VERY in front of aggressive 10 times.
I m now just over 2 years on from diagnosis but still extremely anxious.
Like you I try to focus on maintaining a healthy immune system.
I was quite active pre- diagnosis but now take more regular exercise and am generally more careful about my diet.
Please Keep posting x
Whilst finding this great news, being just under two years from my Her2 positive and Oestrogen postive diagnosis I still struggle with the fact that my cancer was aggressive. And yes, that is what I recall being said several times during my consultation when I was given the news. In some ways the fact that you were almost advised you would be lucky to get 3 years really freaks me out. I was not given any inoformation such as this, and wonder now if I should have asked?
I did have Herceptin and finished this in January. I hope for us all for no return or if it does I hope for improved treatments for this rotten disease. Sorry, I realise I may have tinged this post with my seeming negativity - just the nature of how bc gets to you. Take care all. J.
I do hope I have not caused you to freak out, I did not intend to overshadow what is essentially great news. I just am feeling a bit unsettled at the minute and aware of how this blasted bc has changed me and my life…
Diagnosed Sept, multifocal, invasive, HER2 +++, oestrogen +, intramammary and 1 node +ive(micro). Had mast/axillary clearance/abcess/ 6 chemo and now on 12th rad and 5th herceptin tomorrow. I thought with them throwing everything at me despite the “agressive” word I’d be ok…
I can so relate to what you say, however we have to try and remain positive and be thankful that Herceptin is now standard for us Her2 ladies and that treatments are progressing all the time. I do try to maintain this, but in the dead of night when I can’t sleep I do find that more difficult… I think the frustrating thing at times is the lack of understanding and appreciation the different types of bc and the aggressive nature of some of these. However, i also know that I would have been one of those presumptious people who just thought bc was bc… until it chapped at my door.
Whether your cancer is aggressive or not, none of us really know whether we are going to be ok, we just have to hope that the treatments work the best they can for us. There are ladies who post on this forum who have had a dire dx and are very well yet sadly there are others who had a seemingly better prognosis but have not done so well.
If this helps, I was dx in May 2006, coming up to 6 years, with er- pr+ and her2+ with 2 micromets. Had the works, chemo, rads, herceptin and tamoxifen which I have just finished this week after 5 years. When I heard the words ‘aggressive’ and ‘unfavourable’ almost 6 years ago I didn’t think I would still be around today. In 2006 herceptin was still relatively new as a treatment but thank goodness we have it - we must also not forget the women who campaigned so hard to get it for us.
The poster of this thread, ChristineMH was, in my opinion, our resident expert on her2+, often posting with all sorts of facts and info on her2+ and she is sorely missed from this forum by many of us but how wonderful that she is getting on with her life 8 1/2 years after being given such a dreadful prognosis. For me ChristineMH would light up my dark days when I was first dx.
I wish you well with the rest of your treatment. Best wishes. Love xxx
When I was diagnosed in November 2010 (ER+, PR+ and HER2+)45mm tumour with no nodes involved, I was told that the grade 3 aggressive-ness was how quickly the cells grew and spread, not that it was more likely to recur. I was diagnosed in Dublin and the consultant there said that, and then I had treatment in Harley Street and the oncologist there said exactly the same thing. And she had never pulled any punches in relation to telling me how it is. Both said that having Herceptin cancels out the aggressiveness.
So I suppose to have more successful treatment you have to catch it early and diagnose it early because it grows more quickly.
Out of interest I work with a lady who had BC 7 years ago and was HER2+ and she is still here flighting fit, no problems since.
I am another one who was told I had very aggressive cancer,ER,PR,HER all positive. I had WLE, FEC, rads, Herceptin and was on Arimidex but changed to Aromasin. I am still here, feeling very well and NED 5 years later. I am very grateful that Herceptin was approved for primary cancer during the year before my diagnosis.
All the best to everyone
Anne
