Confused

What sort of trial is it, and why are you being told after radiotherapy? They do like to throw things at you. I was told only chemo as I had a mastectomy with clear margins and no LVI, and 1/11 nodes affected to level 3 clearance. I also had TARGIT intra operative radiotherapy in my armpit during clearance.

This week on Monday I was told that I'd be referred to the radiologist as I might be offered it (???)

He didn’t say which trial - he was looking through his lists of active trials to see if I qualified for any of them - I didn’t. I’m seeing him for a review in 8 weeks and he said he’d find out any details of trials for that appointment. I’m not sure if he’s just throwing everything possible at me because of my age (I’m 50) as prevention or if it’s something I need to be worried about( and up to this point I haven’t worried).

Hi Toothtinks

Reading your post, it just makes me wonder why these specialists can't get training in a 'bedside manner' as some of them are just appalling aren't they?  Mine was diabolical too.  I asked about the side effects ER+ tablets and was growled at and told "you'd be better off giving up smoking" - that day, I'd managed until my appointment time of 2pm without a cigarette (having been a smoker since the age of 13) and he p'd me off so much, when I left I had a ciggie!!!  I then found this forum and relied on the advice from ladies here to ask any questions, rather than deal with such unsupportive professionals as him!  I only found out a year later that I had a completely different diagnosis for the DCIS that I had as well as my tumor (and that was because I paid to get my records from the hospital). My tumor was 15mm, grade 2 ER+ and my DCIS turned out to be 2 areas, totally 54mm, grade 3, ER/PR-, HER2-.  He had blanked every question I asked with a growl or a sniping comment about my smoking.

However, because I was feeling vulnerable (my Mum and Dad had both died in the 2 years previous to being diagnosed) and I was in a relatively new relationship, so didn't feel able to 'burden' him with my issues, I didn't push the oncologist further. I have a brother who lives 5.5 hours away and his wife died of breast cancer not long after our Mum, so definitely didn't want to ask him any advice.  Now I look back and think ' hang on a minute - that is his JOB!' He gets paid to look after patients mentally and physically and if I'd had more strength at the time, I think I would have pushed a bit harder to get the answers I needed at the time.

Can you write a list of questions for when you next see him?

What is the trial he is talking about?  Why is he thinking about it for you?  Why, when you had thought everything was finished, is he suggesting it?  Is it to your benefit or is it research for the benefit of others?  What does it entail? How long do you get to consider your options? etc. etc.

By having them written down, it might give you more control back with the discussion.

I was just 51 on diagnosis and being ER+ and no spread, I didn't need chemo as I take tablets for 5 years, so I don't think it is your age, so it might be down to your NHS area - do they get more funding if they get trials taken up? or something like that?   Who knows!

The other alternative might be to give your breast care nurse a ring and see if they have any information on your file from him - that way you can go in forearmed with what he might be wanting to look at for you.

Best wishes,

Ask for a second opinion from another oncologist. I did. 

It's your body and your life, not theirs. If you're not getting the answers you need, push them! It is your absolute right to do so.

After all, experienced oncologists usually get paid upwards of 100k so make them blinkin' earn it is my motto! 
Gone are the days when consultants were considered to be 'gods' and could do what they like - although some still think they are gods lol   

I didn't like the way my original oncologist treated me at first meeting so immediately contacted my GP and asked to be referred elsewhere for a second opinion. Ended up at another hospital with a fantastic oncologist, so definitely best decision I ever made.

Any patient/consultant relatinship has to be one based on trust and mutual respect. An imbalance either way makes for a difficult time.

Personally I would be very suspicious and be asking LOADS of questions! After all, a lot of cancer treatments are still 'experimental', imho, even those that have been around for a while, never mind the new ones.

if you're not happy with their approach, or no sensible explanations and answers to questions are forthcoming, don't put up with being shoved around like a guinea pig .

I've discovered that a lot of information isn't given out openly upfront, but only on a 'need to know' basis.
Not saying that oncologists are fibbers, just that a lot can be more than a little economical with the truth...hehe  

Take charge and good luck! xxx

There is never a need to do a trial and saying thanks but no thanks does not affect your future care.

Another vote for talking to your breast care nurse as trials are many and various in their stages and what they mean for you.

If you don't  feel comfortable with your oncologist do ask for a different one or a second opinion.

In addition I always ask for copies of letters sent to GP because in spite of being a retired nurse my head's  a shed at consults

Hi Toothtinks

I was offered the add aspirin trial , to start with they put you on aspirin to see how We tolerate it . Then I started the trial - I knew within a week that I was on the placebo - no bruises lol and when I got my nipple tattoo I asked if I was bleeding more than would be normal - no. 

I then took mini aspirin off my own back and went back to get next stage of nipple tattoo and nurse said oh !? What’s changed as you are bleeding . So confirmed I had been on the placebo . I then went to my GP to ask if they would support me if I took aspirin myself - well she was horrified and went on about risk of bleeding and strokes . She felt very strongly about it . She said aspirin is a wonderful drug but she didn’t feel the follow ups on the trial were that good.  I came off the trial and no one said anything , in fact they totally understood that after all I had been through to have to take a placebo was disturbing , reminding me of the cancer. 

Aspirin , they are trialing to  see if it prevents cancer recurrence on the bones .  I have read up on this and if I had been on the actual aspirin I may have stayed on it . But I off it now and without my doctors support I’m not taking it. They used to prescribe it for people with heart conditions but lots of doctors no longer do this , due to risk of stroke. 

So you see trials have there risks . I will be first in line if I ever needed any treatment but I’ll stay with what I have for now. 

Love 

Ruby Rose  

Thank you for the replies everyone. 

I’m due to see the BCN soon for my new boob so I’ll quiz her on what’s been said, they do seem to rate him as a consultant , maybe it’s just that my ‘control freak’ tendencies ( I know that I tend to HAVE to be in control of things and have everything planned out exactly) can’t cope with his more laid back planning.

I’m not against doing a trial just seemed to be an odd time for him to be looking at it as I thought they’d look at it at the beginning of treatment rather than as I’ve completed the plan. Maybe it’s because I didn’t start off the treatment with him as I’ve been seen at 2 hospitals - local one does chemo and surgery but not radiotherapy. 

Hi Toothinks,

You don't have to do any trials if you don't want to. I am now 12 weeks post chemo - no rads. I was asked to do the aspirin trial too but said no as my ex was on low dose aspiring for heart issues and had a stomach bleed. By constant u derstood and was fine with it.

I know these trials can help find better treatments but this one was a no no for me. The less medication the better! Hope you make a good recovery. My hair is just coming back LOL

xx

That’s my view on medication as well! Until this happened I hadn’t taken any medication apart from the odd paracetamol for 30 years. After my chemo experience I shall be very cautious in taking anything extra
The hair is coming back but the chemo curls are kicking in so I’m starting to look like a poodle!