clinical trials advice

Hi there

Not sure if this is the correct place to post this, but I’m looking for some advice on taking part in clinical trials for treatment of breast cancer.

I was diagnosed last wednesday with Inflammatory Breast Cancer and understood that the treatment would be chemotherapy followed by mastectomy, followed by radiotherapy depending on the results.

I’ve since spoken to my BCN who has said they’ve booked me in for a mastectomy in 2 weeks time. She explained that although it has always been the norm to do chemo first, they are looking at doing mastectomy first as they will then be able to do a more throrough biopsy of my cancer cells and target the cells with chemo. It seems to be part of some clinical trials they are doing on this.

I asked whether I could have the chemo first and she said, so long as the oncologist agreed, that I could although it might mean waiting for 6-8 weeks for treatment to start if I wasn’t going to take the treatment route they are advocating.

I was just wondering how clinical trials work and whether or not I’m obliged to take part and what impact it may have on my treatment if I decline.

Any advice would be gratefully received. Thank you xxx

Hi wubbly,

Could I suggest that you give the helpline here a ring I’m sure they’ll be able to answer some of your questions. The lines are open now until 5pm today then 5-9 Mon - Fri and 9-2 Sat, calls are free, 0808 800 6000.

Take care,kind regards,
Jo, Facilitator

Hello Wubbly,

No, you do not have to participate in a clinical trial and not agreeing to participate in a trial should not affect your treatment. There are regulations on these matters and any trial would have had to make such things clear to patients to pass through the necessary ethics committees.

However, are you sure that this is a trial? If this new treatment is part of a clinical trial, then that should have been made absolutely clear to you and you should have received lots of paperwork about it.

Is it possible that your centre has been participating in some clinical trials and the results are promising, so they suggested this new treatment to you? This isn’t the normal course of things, but sometimes happens when oncologists are concerned that current treatments might not be effective enough. For example, my oncologist put me on taxotere because some preliminary trial results indicated that it would work. I was one of the few patients with stage II breast cancer to be treated off trial with taxotere because my cancer had other bad traits and I am still around and disease free six years later, although other patients weren’t so fortunate.

Is there any way that you can get to talk to your oncologist, if not the consultant then a junior oncologist? They would be able to tell you more precisely why they are recommending this change in treatment.

Thank you Christine.

I’ve managed to speak to my BCN and it’s not a clinical trial they’re putting me on - I think I’m just struggling to take it all in and getting confused.

You’re right, what they are talking about is a new way of using treatment following on from great results seen in clinical trials. I suppose it’s all just a bit frightening not quite knowing what it is I’m dealing with and what will be happening. I’ve got to slow down!

I’m so glad to hear you’ve had such great results with your treatment, Christine, that’s fantastic news! It’s really encouraging to hear such good stories, thank you for taking the time to answer me, I really appreciate it

Wendy xxx

I’m so glad that you sought clarification. To be honest, last night I was going to suggest that in the first instance that you should do this, as it sounded as if you had simply misunderstood what they had said to you. But thought that sounded a bit cheeky! Good luck with the treatment-and don’t be afraid to requestion your onc/bc nurse if there are things you don’t understand-they will be quite accustomed to patients getting confused at such emotionally charged times.

Thanks Elaine, I’m sure you wouldn’t have sounded at all cheeky, but I do understand what you mean.

I’m only beginning to realise just exactly how difficult it is to take everything in and process it properly. Thankfully, my hubby was there at the initial appointment and will be going with me again on Thursday next week, so he can help me recall everything, it’s only the phone calls I struggle with.

Hi there

Sorry to butt in.

This sounds a lot like procedures that are undertaken in USA where they tailor the chemo to suit the tunour. It sounds good to me. I think they test the tumour to see which chemo will work best.

If that’s the case it must be good - or have I got it wrong?

Mal x

Feel free Mal, really, all information is most welcome!

From what my BCN has said then that is exactly what it is they are talking about. The idea seems to be if they can do the mastectomy first they will, so that they can tailor the chemo to me specifically. Now that I’ve got my head around it, it does seem logical, I think I was just worried that they were 10 years behind rather than up to the minute!

I’ve not been able to find out much about it for IBC but I do feel happy that they know what they’re doing and if it does have the potential to give a better outcome then I’m all up for it!