Help! Questions for the consultant tomorrow

There are alternatives to Letrozole, you probably need to ask about what else you can take instead. And don't get fobbed off!

Many thanks for taking the time to respond.I Will do 

Hi Wren21,

Sending huge good lucks for your review tomorrow. I feel very similar when I go to see the breast consultant - everyone says how lovely he is but while I have complete respect for his professional care I def don’t relate to his manner. When I started to feel a bit more in control after so many emotionally destructive appointments, I decided that I had nothing to lose so became as forthright as he was (not my natural ‘setting’ at all). I am also lucky enough to have just the kindest & approachable oncologist so I try to remember what the breast guy says & ask the oncologist to clarify things for me. It makes the appointments far less daunting knowing there’s a point of contact that I trust completely. Do you have anyone else on your care team who might have a gentler approach & make you feel more comfortable to explain your concerns? You sound perfectly clear and understandably concerned to me. 

With regards to Letrozole, I’m just coming up to a year on it, alongside Abemaciclib, so relatively early days for me. The oncologist said that for hormone sensitive cancer, Letrozole was the most important to stick with but that there was some sort of additional medication that we could consider if things started to get too overwhelming (I’m guessing anti depressant). Def like menopause on steroids & I relate to the bleak periods - can sometimes feel my mood plummeting & still trying to work out ways to avoid this. Like you, it all comes on the back of a few huge life curveballs too so not sure if it’s all Letrozole or if taking it just makes everything more difficult to deal with. I suspect the latter . Brain fog, difficulty making decisions, emotional resilience, general cancer battle fatigue - such fun. TheHighlander on this site explains it beautifully as your life rucksack being just too full & I think Letrozole for some of us metaphorically makes even carrying that heavy load bewildering.

You probably know all this already, so apologies. I have read some people say different brands have different impacts due to fillers but I don’t think I’ve been on it long enough to see a pattern.  I do have one top tip that might help you - during menopause (I’m 55) I hit on apple cider vinegar to help hot flushes. I checked with the oncologist who was happy for me to carry on with it throughout chemo & now. For me it’s amazing - literally no hot flushes/heat rushes from the first time I took it. I take about 1cm (sorry don’t know the mls) in a big glass of water each morning. It’s just a little thing, but if it helps a little bit then Yay!

I hope things go well tomorrow. Like you, I probably wouldn’t know what to ask (whatever was left of my intelligent thinking brain packed it’s bags & left the building entirely during chemo) but I try not to worry too much about waffling on (as you can tell) if I eventually say what I meant to say - & know that someone on here usually has great advice too. Just a thought, maybe tell your consultant that Letrozole is making organising your thoughts difficult at times so what sort of questions have other patients asked at this stage. 

Hugs,

Jo

Hi Wren 21

I would definitely ask for percentages of 10 year survival without the drugs and then with the drugs because there might not be too much difference. At least if you know you can make an informed choice of what to do.

It's easy to be intimidated by Medical stuff especially if your consultant seems to be in a hurry but it's your appointment and your body. 

Good luck for tomorrow x

Huge thank you Jo.  You've really helped me focus on what I need to ask & that I need to consider that  the natural course of life & not just Letrozole is contributing to things.  PS I will try your apple cider vinegar too.  xx

Thank you.  xx

Hi, sorry,  coming a bit late to this. Is there someone that can go with you tomorrow, to help make sure you can get your points across and to also note down what the responses are?   I found I handled things better when my husband was with me and between the two of us we had a better chance of remembering what was said.   Our hospital prefers you to come alone to appointments but I never had a problem bringing my husband for the review with the consultant.    Best wishes and good luck 

Think I might have drivveled on a bit - don't seem to know what point I'm trying to make so can't ever get to it , sorry.

Please don't think I was implying you were overestimating the impact of Letrozole. More that the stuff makes all the other hard stuff even harder.

(Re. apple cider vinegar, it has to be with 'the mother' which is the really unappetising looking cloudy stuff at the bottom. Lidl do a cheap but organic one which seems to work as well as the more expensive Aspall's one.)

Kind thoughts coming your way,

Jo 

HOW DID IT GO???!!! Xxxx

Hi,

Did you get any reassurance at your appointment?

1. x