Should I ask for a new assessment - t... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Should I ask for a new assessment - third edition - the results are good and bad

ginkgo profile image
8 Replies

I saw my oncologist today after having a new scan with contrast. The good news is that my NSCLC hasn't visibly grown in comparison to the xray on June 1st and is around 1" diameter. I am feeling very well at the moment, fit and active, and putting on weight. The cancer is still in my left upper lobe and the lymph glands in the centre of my chest have grown a little, but I have no cancer elsewhere. None at all. I was very pleased to hear that.

The bad news is that my cancer is incurable. The palliative radiotherapy that worked so well to drastically reduce the tumour cannot be repeated, and chemotherapy will not get rid of 'my' type of cancer, but it may extend my life by a few months (but it was emphasised that it would only be a few months but the chemo would make me ill for a few months so somewhat of a trade off). My cancer doesn't have the 'markers' that makes treatment successful.

I will meet with someone who specialises in chemotherapy in a couple of weeks, get more information, and then make a decision whether to pursue chemo or not.

I am pretty depressed at the moment, when I should be grateful for having had one reprieve thanks to the palliative radiotherapy and for having these few good months when I expected none. I cannot bear the thought of being totally dependent on help from others, as I have been fiercely independent my whole life. I can care for others, but hate having to accept it. Silly, I know, but that's me. I'll let you know what I decide but best leave that until I have overcome the shock of being told there is little that can help me.

I hope everyone else is doing well, and I wish you a bright, happy and healthy future.

8 Replies
Lyubov profile image
Lyubov

I think, for myself (can never be sure until am at same point as you are), I would want anything that could improve quality of life, diminish pain, and eliminate serious depression. So, I would want to be as comfortable as possible. . .

sassassas profile image
sassassas

Thank you for sharing your news ginkgo Please don't give up. Its good to hear it's not growing and you are keeping well physically. If you chose to have chemo, this will stand you in good stead. I'm sure the meeting with the oncologist will be really helpful and and allow you to find out what treatment options are available to you. Sending you love x

JanetteR57 profile image
JanetteR57

always hard to deal with mixed news like this - have you asked whether there are any clinical trials available as an option - have they considered immunotherapy? I'd also be asking if I didn't have treatment, what supportive care would be available when I needed it? thinking of you.

ginkgo profile image
ginkgo in reply to JanetteR57

Thanks for the suggestion Janette, but I don't want to make any decisions at the current time. I just want to get my head around it all. I also have to be careful with my thoughts, and stop looking for bogey men where they may be none, but I felt completely abandoned after the palliative radiotherapy and felt like I was sent home to die. had one meeting with the oncologist two weeks after the radiotherapy to see if I had come through it ok, but no follow up, no scan, no indication that anything further would happen, just the bleak news that I was too ill for any further treatment. I would still be abandoned and unseen by everyone at the hospital if I hadn't pestered the cancer nurse for more information. I saw the notes at the end of the original MDT session where they said that decisions made may be different to those made under 'normal circumstances' and knowing the pressure the NHS is under with covid and everything else I often wonder if I am not worth bothering with, along with many other cancer sufferers, to ease the NHS crisis. I don't know what I will decide, the first option the oncologist gave me was to do nothing. What he told me about chemo was very unappealing and he basically said it would be a waste of time for me as it would only 'possibly' extend my life for a few months but the chemo would make me ill for the same number of months. So no real hope offered to me other than 'pain can be managed'. I still feel abandoned and feel I am being discouraged from requesting treatment or further monitoring, but at least now I have a forthcoming meeting with a chemo specialist to get more information. I am too depressed to 'fight' for anything at the moment, but I'll bounce back. I always do. :)

JanetteR57 profile image
JanetteR57

so sorry to read about your understandable feelings - many similar conversations were held with people during the pandemic particularly for adjuvant or mop up chemotherapy where the risk of contracting covid or something else in the hospital was far more likely than the limited benefit of having treatment in terms of life extension. I read a book recently called 'Doctors get cancer too' by Dr Philippa Kaye where she as a GP who developed cancer expressed her surprise and disappointment when it was explained to her about the possible benefits chemotherapy might bring (or not) for the likely side effects - she said this was a shock to her even as a trained medic so although it's easy as you say to have these gremlins in our heads telling us it's due to the cuts or something else, it's rarely personal. However that's no excuse for leaving you to fend for yourself - do you have a lung nurse you could talk things over with? Even if there's to be no 'active' treatment, there's still a duty of care to follow you in the lung cancer pathway and offer support in the community or hospital .... I do hope you can get some further support to reassure you even if active treatment isn't a real option at the moment.... hopefully you can let the oncologist know how you've been feeling and would like the team to know the impact of less than optimum contact... good luck... thinking of you.

ginkgo profile image
ginkgo in reply to JanetteR57

Thanks again Janette for responding. I've more or less given up hope of getting anything more from the NHS. I'll meet the chemo expert but doubt I will receive any encouraging news. The original terminal diagnosis is still in play, or the excuse for no further monitoring or treatment, even when a little miracle occurs as it did with my palliative radiotherapy.

I keep hoping I am wrong about the NHS, but the more I look back and think about it, the more disappointed I am by some aspects of the NHS, but I'll be around a good while yet as my cancer is still a whole lot less serious than when first diagnosed. I need to put mind over matter and ORDER my body to remove the cancer. :)

RoyCastleHelpline profile image
RoyCastleHelplinePartner

Hello Ginkgo,

I am sorry to hear that your lung cancer is now incurable, this will have been incredibly hard news to hear, on the positive side the last CT scan shows the cancer has not progressed and you are feeling very well.

As JeanetteR57 has said it is always worth asking about clinical trials, Cancer Research UK has a nurse helpline and also a current list of clinical trials that are recruiting.

cancerresearchuk.org/

Maggies centres have many resources for cancer patients and their families, they provide free support for all parts of the cancer journey from financial and benefits advice to emotional support and counselling. These centres are based near to the main cancer hospitals, if one is nearby, it is worth making contact to see what they have to offer in the way of support.

maggies.org/

If you would like to discuss anything at lungcancerhelp@roycastle.org, our free phone nurse led helpline number is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kindest regards

The Roy Castle Support Team

ginkgo profile image
ginkgo in reply to RoyCastleHelpline

Thank you for all your help and support. It means a lot. I'll wait and see what the chemo expert says but notice there is Clinical Trial Centre 11 miles away from me if the chemo looks to be a non-starter. I could be lucky a second time!

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