I had a massive pulmonary embolism two months ago, and after x-rays were taken (and I was still in the emegency room bay!) I was told I had a mass on the left lung with a secondary mass on the adrenal gland.
Three days later I had another PE.( I know how lucky I am to have survived.)
Whilst in hospital, biopsy confirmed NSCLC stage 4. Further mass found in groin and in gland in neck.
I was told there was no option for surgery, but chemo was discussed. However, blood-tests and MRI brain scan showed tumour on pituitary gland which confirms acromegaly....and that this has been a longstanding condition, undiagnosed for many years. (There is a mass near this gland, but I'm told this may be a cyst, and cysts on the pancreas...which are all thought to be due to the acromegaly.)
No further tests are planned because the doctors say nothing will change my outcome...but I expected to have chemo, to help give me more time.
When I saw the oncologist, she was concerned that chemo may prove adverse therapy...because acromegaly causes heart problems....but my lung and heart consultant says my heart isn't enlarged and chemo could be taken.

I have had two weeks inpatient care at the cancer hospice, where they established my drugs regime, and am home and feeling so well.
I just don't know what to do...if chemo would give me time, I want time.
And I have to be assessed as "well enough" to take the chemo....well, I feel well enough now, and I think the oncologist would reconsider, too.

I'd welcome advice from anyone who has similar cancer diagnosis and has had chemo, or anyone who decided against chemo. :wave:

I'm fully accepting of the NSCLC, just getting on with life in my normal frame of mind, and so grateful to have this time after having survived the embolisms. I have a 21yr old son, just graduated from university but no other family.

And I realise the acromegaly factor is a rare one, having posted under another section a little while ago, with not a single response, so I deleted that post and moved to this section, in the hope of a reply!!! :wave:

Ellengrace,

I'm sorry about your diagnosis, but it's good to hear you're a fighter! Please get a second opinion, especially when it sounds like your health situation is somewhat complicated. I don't know how difficult it is in the UK, but please don't give up.....

Ellengrace,
What a fighter you are and yes I too agree a 2nd opinion is in line if it is possible. I don't have any knowledge of your type of cancer, but wanted you to know you are in my prayers. As far as going forward with chemo and your conditions I don't know, but I do know if my husband had not had it he would not be here today. My husband has no cure for the SCLC that he has, but he opted for chemo and it has not been easy, but 17 months later he is with us. He is slipping a bit lately, but has had some good times and some bad times. If he had not opted for chemo he only had 2 to 6 months.
Anyway, thought I would share that with you, but given you have other health concerns I am not sure what would benefit you.
Take care of yourself and let us know what you decide and if any other doctor can shed some more light on your treatment.
Kim

Hi Ellengrace
I'm also a new user to healthboards and my Dad has stage 4 nsclc...and is only receiving palliative care but you sound as though you've been through far more... I know very little of your condition and what would particularly help you but wanted to encourage you to take expert advice on whatever is available treatment wise that is going to extend your time and your quality of life. thinking of you; don't give up hoping.
Take care
Teresa

Thank you all for your response, and for your good wishes. Please accept my best wishes for you, with my prayers.

TeresaB, I am sorry about your Dad having nsclc, I don't know if I should ask this of you: but can you tell me if he had the option of chemo? Or did he decide himself to go with the palliative care?

I find it very hard to ask questions in this forum....I feel there is a line that shouldn't be crossed, and which I don't want to overstep. And I just don't know where that line is drawn.

But any help or advice is welcome. Physically, things have changed in a matter of days, and I don't feel so well.

Thank you.