first time poster - probably won’t be my last !! Just at the start of this journey, mums getting her Treatment Plan for first line treatment on Friday and I’d love any thoughts on what questions we should be asking?
And would this be the stage for getting a second opinion (and is it worth it?). I've read a lot about specific doctors (Dr Banarjee for example) - and am wondering when we should speak with them. Does it make sense to go to these doctors for surgery only or also chemo treatment etc? (My parents are about 90 mins from the Royal Marsden so wouldn't be keen for chemo or regular appts, but for perhaps surgery I would think it makes sense!!)
Thanks so much in advance 💖
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georgiageorgia182
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Firstly, I wish you and your Mum didn’t have to join our little group here, it’s not something anyone wants to be a member of.
Having said that what else can I say? I’d say, “Be careful about using Google - or any search engine”. You can get useful info BUT bear in mind that the prognosis you may find there is often out of date and unreliable. It’s often a lot better!
Second opinions can always be sought but may not be needed immediately. Check out information the various charities put out first, including here on the Ovacome site. This will give you an idea of what you and your mum can expect, and whether you are getting a good service from your Oncology Team. If in doubt then do go for a second opinion.
You don’t give any specifics as to what stage your mum is etc so it is hard to offer much advice. Perhaps make a list of your Mum’s concerns to put to her oncologist and/or specialist nurse. I always request a copy of my CT scan REPORT and discuss it with my oncologist but you have to have some understanding of the terminology for that ( you can learn it!). Write a list of questions before the appointment, you can read about general issues, such as fatigue and constipation, but you really need a list of specific questions such as, “Why do I have a pain here?” - definitely include a question about pain management, if you’re Mum is having pains.
Ask your Mum to keep a diary of when she has pains and what level (see the Stanford Pain Chart). Also when she is passing, if constipation is a problem; fatigue is also something to note.
I hope she wants you to be with her at her appointment but remember that it is her choice. It is useful to have someone with you if you have had an OC diagnosis and are seeing an oncologist, it is easy to miss things so someone else taking notes does help.
There is so much I could say but I will leave it here for now. I’m sure you will have advice from others to fill the gaps I’ve left.
Thank you so much for takign the time to reply Iris, this is incredibly helpful. We're awaiting results from a biopsy so I don't know much more about my mum's cancer at this stage - beyond that it is stage 3 (CT scan showed it in omentum I believe).
This is all incredibly helpful to raise re tracking symptoms etc. Out of interest, why is the pain diary helpful? Is this to track what specifically is causing the pain?
I hope the results from the biopsy are the best possible. You may have more questions when you get the result and I’m sure there will be answers here.
A diary can show a pattern which can be helpful to work out what is the cause and intensity of pain. It’s also useful if constipation is an issue, which is often present with OC and treatment. Your Mum can also note any issues in a diary so she doesn’t forget them when she sees her oncologist.
As already said, sorry that your family are starting on this journey.
I wanted as much information as I could get from my appointments because information is one of the few ways of taking a level of control. I knew my treatment options were likely to have been surgery, chemo or radiotherapy. And so I googled 'questions to ask for chemo treatment', ' questions to ask for hysterectomy.' etc. I found some really useful suggestions for questions that I wouldn't otherwise have thought about. Just be careful what subjects you consult Dr Google on - he's best consulted to signpost you to major organisations such as this one.
Someone suggested that I keep a diary during treatment which I found to be really useful. But my one piece of advice would be to go a step further. Suggest your mum starts to keep a diary now and logs normal bodily functions, how she's feeling etc. I can no longer remember what 'normal' felt like. Even though I've finished treatment and am NED, I would love a memory jog to stop me overreacting to normal daily variations.
I didn't get a second opinion because I had confidence in what I was being told and the treatment options I was given. But if I started to have doubts, that would have been my trigger.
All the best for the days, weeks and months ahead.
Thanks so much really like the suggestion of recording what feels normal now to ease future anxiety, that’s a great idea that I’ve already passed on. Really appreciate you taking the time to reply and hope you’re doing well xxxx
Sorry to hear about your mum's diagnosis and I hope her treatment goes according to plan.
It might be worthwhile asking if your mum could have her blood and tumour tested for genetic mutations. The most common one for OC patients is the BRCA mutation but you could also have her tumour tested for hundreds of different mutations that may help with future treatment decisions. We had to pay for these tests ourselves, but I think it is worth it.
You might also want to ask if the oncologist is planning on prescribing Filgrastim/Neupogen during your mum's chemo treatment. This can help with low neutrophils and will minimise time without treatment.
It makes sense to have surgery with the most experienced surgeon you can afford. I think the surgery is most important part of front-line treatment. Chemo is chemo and your mum is most likely going to have the same combination as everyone else (usually Carbo platinum with paclitaxel). The chemo dosage is determined using height and weight and not a very complex part of the treatment process. Your surgeon and Gynae Oncologist are going to be two different specialists.
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really like the suggestion of recording what feels normal now to ease future anxiety, that’s a great idea that I’ve already passed on. Really appreciate you taking the time to reply and hope you’re doing well xxxx
Debulking surgery
Advice on second opinion!
Post treatment controls
