Hi, I was diagnosed with grade 2, 22mm tumour, have had it removed now and was told that if it hadn’t spread to the lymph nodes it would be 3 weeks of rads and tamoxifen, if it has gone to the nodes it would be chemo, rads and tamoxifen, went and got results last monday and they have changed the goal post now and it has completely thrown me, fab news is that nodes were clear, but that as it was 2.2 they have offered me 7 months of chemo, + rads + tamoxifen, the figures they test on were 2.1 - 3.0 as I am a 2.2 right at the bottom of the scale, some of the docs say yes, chemo, some say not needed, the onc I am with is definately pro chemo, my head is spinning with trying to decide whats best, I found this forum yesterday and after reading lots of posts, I thought it time to see what you guys thought, as so many of you have been through things and had to make decisions, I have an appointment at oncology next thur 30th and if I go ahead with the chemo it would start on the friday (aaarrggghhh scared :-0 )
Firstly, welcome to our discussion forums, I am sure you will find them a great source of information and support.
Whilst you are waiting for responses to your post, I thought you might be interested in one of our information packs. It is aimed at those newly diagnosed and contains information to help you better understand your diagnosis, test results and the various treatments available.
It’s available to order through the site and I’ve given the link here if you’d like to have a look:
I live in Bury St Edmunds but am having some of my treatment at Addenbrookes so we are near neighbours.
It can be frustrating when it seems that we have an understanding of our treatment and then the experts begin moving goalposts and giving us options. I think that many of us have been there.
For me the confusion arose when the two oncologists that I saw on consecutive appointments seemed to give me conflicting advice. Chemo was never going to be a choice as I had three lymph nodes affected, but my tumour was relatively small (15 mm) and as I had a MX for DCIS, rads were not a definite.
I was persuaded by the oncologist advocating rads that because of my age (I am 49) it was worth throwing everything at it at this point. So I opted to have chemo, rads and tamoxifen.
Have you considered talking to another oncologist so that you have two opinions?
Nice to know your quite near, I forgot to add my age, I’m 48, which is why I think they have offered me the chemo, I hadn’t thought of asking another oncologist, maybe that would be the best way to go,
thanks Jacqui, how much longer do you have to go with your treatment ?
Choosing whether or not to have chemo feels like a much bigger deal than making a decision about radiotherapy as I have. I know that your treatment will have been discussed in a team meeting so everyone should be in agreement about what is the right course of action, but you when are on the borderline I do think that some oncologists see it slightly differently.
Do you know why your chemo would be 7 months? Is ie E-CMF regime? I had FEC-T and that was all over in 4 1/2 months, I don’t know if having it over quicker would affect your decision or whether FEC-T would be available to you or suitable, but may be worth asking.
I had the set up appointment for my rads on Monday … so just have 3 weeks of rad to go for active treatment, then just Tamoxifen and follow ups and a bit of tidying up to my plastic surgery.
Would you like to have coffee after my radiotherapy one day? I am having it at Addenbrookes.
The chemo they have said is the E - CMF regime as you say, over 28 weeks, then 2 weeks off, then 3 weeks of rad and the tamoxifen, I just keep going over what he said, that I was bang on the border line and they couldn’t agree ! He did say if I decided not to do the chemo he wouldn’t follow me out to the car to try and persuade me as I was a low risk !!! Somedays I think yes, some no, so I’m really no further forward ! I have spoken to my doc and she’s going to look at my path report mon when I drop it in, I’m 100% going for the radiotherapy and tamoxifen
It would be lovely to meet and have a coffee when your over here and feel like it
I’m in Bury St Edmunds too, but a little further down the line from you as I finished my treatment last November. I had my radiotherapy (4 weeks) at Addenbrookes. I had a 3.5cm tumour with no nodes affected, but was advised to have chemo because I was young (41 at the time).
I did the E-CMF regime - it seems to be the chemo of choice for node negative cancers in this region. It goes on for a long time compared to some of the other regimes, but it’s doable. Not fun, not pleasant, but definitely doable.
As for the choice on whether to go for chemo or not - my own view was that I wanted to throw everything I possibly could at it so that I could feel as if I gave myself the best chance of a full recovery. It’s a very personal thing, I wouldn’t presume to say whether you should or shouldn’t do it, but that’s my take on it.
Best of luck. So many of us crop up here from a quite a small radius, there are 4 or 5 people from Bury who have been here in the last 18 months. Must be something in the water!!
Thanks so much for your view, they all help, it’s also nice to hear someone who has been through it and out the otherside !! I think I am going to be erring on the side of caution !
I am still waiting for my dates for rads, but will def send a pm once I have them. If you would like a chat before then pm me and I’ll send my phone number.
Hi Gennie
The breast surgeon told me that there are approx 5 new cases of BC each week in Bury, but for the size of the area that the West Suffolk covers probably just average
Do you know about the Breakthrough Breast Cancer events at Arc next month?
