I’m 51 with an 11 year old daughter. I was caught with DCIS in my first mammogram in Feb this year, 72mm grade 3. I’ve had a masectomy since (right breast). That tissue revealed grade 1 Invasive Ductal Carcinomas (IDC) - so three small separate tumours and lots of micrometastasis which was waiting in the wings to form into tumours (they found some of this in one of my lymph nodes too).
To stop the possibility of the cancer re-occurring it’s looking like TC chemotherapy and a drug called Herceptin – it’s like an insurance policy really. The outlook is pretty positive as everything caught really early… it’s just chemo will help to stop the likelihood of the cancer coming back, and with HER2+ receptors that’s a slightly raised likelihood. On the positive side, if I do nothing I’ve still got an 83.9% chance of being here in 10 years. The chemo and Herceptin together raise that to just over 91%. Or, looking at it another way, a 1 in 5(ish) possibility of not making another decade, reduced to just 1 in 10 if I embark on the chemotherapy regimen. I’ve tried to manipulate those figures!
My heart screams no and my head screams yes. I’m seeing my oncologist this Thursday. I know it’s my decison… but just to make contact with anyone in a similar boat would be great.
Dear LinsLleisio
Welcome to the BCC forum. I’m sure you will soon get some support from fellow members.
You could also talk things over with one of our Helpliners. They can offer you practical information and emotional support. The opening times are 9-5 on weekdays and 10-2 on Saturdays. The number is 0808 800 6000
Very best wishes
Janet
BCC Moderator
Hi LinsLleisio
I was in a similar situation to you however, I’ve decided to go with chemo. You can take a look at my thread here:
breastcancercare.org.uk/community/forums/waiting-test-results/results-are
It will give you all my results and the analysis as to why I’m taking it.
There is also lots of good advise from other ladies on there too.
Good luck with you decision,
Martha xxx
Thank you both so much. Martha I will read your link now. Thank you, thank you. xxx
Hi LinsLleisio,
I remember being in a similar position 12 months ago - it is so difficult. Like you I weighed the odds against my fear of chemo but I had a very strong desire to survive longer than 10 years and see my sons grow into men. I decided to go for the chemo - I felt I was trading 6 months of chemo for 10+ years of life. Now I am on the other side and chemo is something that finished 6 months ago. Yes, it was tough at times, I lost my hair and was pretty poorly at times but now I am back at work part-time, have my own hair again and am starting to move forward.
Looking back I can see that I was really frightened of chemo - but once I started on my chemo regime it became bearable. I also recognised at the time of making the decision that if I didn’t have chemo I was likely to worry about the return of cancer because I hadn’t thrown everything at it. Ultimately, it is your decision and you have to make one that you can live with. If you need more information ask your oncologist, the BCC helpline and don’t be rushed into making a decision - take your time, an extra week at this stage won’t make much difference overall.
All the best
Hi LinsLleisio
It is entirely your decision, but for me would be a no-brainer!!! You are HER2 positive and Herceptin is the wonder dug for this type of chemo. Only a few years ago it wasn’t available on the NHS. Ladies were fighting for it, so much so it became available nationwide. It is only licenced for use alongside a taxane chemo regime in primary breast cancer cases, so to have Herceptin you have to have a Taxane drug. Your prognosis with that is a massive increase than without it. The chemo is manageable and not everyone suffers badly. I haven’t. I am on cycle 3 at the moment. I am 65. I want to live cancer free another 20 years minimum and will throw everything at it that I can.
My dx was a tiny 15mm lump that was grade 3 IDC but after my lumpectomy they discovered surrounding DCIS that had spread into the otherwise clear margins so I had a cavity shave to get rid of it. No lymph node involvement and no vascular invasion. Cancer gone. In a jar in the path lab. However, HER2 positive is very aggressive and who knows if some microscopic cells escaped unnoticed. I wasn’t taking the risk. I did not want to be blaming myself in 5 years time if it comes back.
I am also on TC/H the H being the Herceptin. This is a good regime, better than FEC as there is no nausea or sickness. It is manageable and is only a few months out of my life.
Good luck with your oncology appointment. Make notes before you go, ask questions, don’t leave till you have answers, and listen to your oncologist! He is the expert. xxx
Thank you so much for your comment - I will read your thread with great interest. It really helps xx
Hi LinsLeisio,
I have also been told I need herceptin as HER postitive, so will need chemo to work alsong side this. The BCN told me that there are some ladies who are trying herceptin without chemo, but they dont as yet know any results from this. I have to have chemo anyway because of my age (33) so in a way that had already made the decision for me, but I think you need to take every extra precaution to prevent cancer returning. When I mentioned percetentages to the BCN and said that if it only made 2% benefit for example (dont know my stats as yet) of getting chemo then this didn’t seem a lot. She told me that in the medical world any improvement is classed as a big deal, and when they do reasearch into things, if a drug or particular regime works but only gives maybe a 0.5% better chance then this is classed as big news and procedures and everything change ( so I think it may not seem loads in our heads but medically even a few percent is classed as good).
I’m not looking forward to chemo in the slightest but I know its something I need to do to try and make me better and stop it returning.
Ultimately its up to you and you have to be happy with what you decide, hopefully you will feel more able to decide once met with the onc.
Take Care
Faye
Dear Janet, Martha, HKU63, Lola, Faye - thank you all for taking the time to reply. I think this time of decision making is the worst, like treading water. Once a decision is made I think at least you can move forward. I hate the thought of ‘making’ myself ill, I’m so fit and well, always have been. Seems strange to ‘voluteer’ to be sick! In my heart of hearts though I think I’ll probably go for it, mainly because if the cancer came back I’d have huge regrets.
Martha your thread was inspiring and so postitive, thank you. Faye, I thought the difference in my percentage was so small, but you made me think maybe not. I didn’t realise either Lola that TCHerceptin didn’t make you so sick. And HJU your thoughts so clear and I hope I’ll be able to say the same in 12 months time to help someone else.
Thank you. Lins
Hi Lins
I’m glad my thread helped you - I told my chemo doc today that I’m going for it. FEC x 6, so it’s all go now.
Take care
Martha xxx
Had my first session yesterday Martha xx. Missing you on the June Jewels board, hope you’re OK? Big hugs, Lins xx
I’m back on track sweetie - I hope your SE’s are easing a little. I had a blood clot and that help me back for a bit xxx