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Old 10-26-2006, 05:19 AM   #1
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ellengrace HB User
Acromegaly

Hello, my name is ellengrace and I am new to this forum.

I hope someone has knowledge or experience that may help me. At end of August, I survived a Massive Pulmonary Embolism...and in the A&E bay I was told I had a mass on the left lung, and on the adrenal gland, since diagnosed as NSCLC stage 4. There are mets in the groin and neck,too.
I survived another Pulmonary Embolism whilst in hospital.
My hospital consultant also recognised charcteristics, in my apearance, of Acromegaly. He ran blood tests and an MRI brain scan, and confirms there is a tumour on the pituatary gland, with a "cyst" very close to the gland. The acromegaly, he says, is still active but my heart doesn't appear to be enlarged.

When I was discharged from hospital, I saw an oncologist who didn't seem fully confident about the acromegaly issue with chemotheraphy. The heart concerns, etc. There are also multiple "cysts" on the pancreas which are considered to be connected more to the acromegaly than the cancer...though how they can say this without ant tets or biopsy I don't know.
I feel the doctors view is that my cancer is terminal, that there is no point doing invasive tests which will ultimately have no bearing on my outcome.

After leaving hospital, I developed multiple phlebitis?thrombophlebitic sites on my legs, and the legs swelled to assive porportions with edema. I was given two weeks "intensive care" in a cancer hospice, and they sorted my legs out, and gave me a drugs regime..over a period of "fine tuning" and wonderful care...that has me back at home and felling well. It is hard to believe I have anything wrong with me.

I have this thought: I feel well enough to cope with chemo. My lifestyle now
satisfies the oncology criteria for inclusion in a chemo programme.
It is just the acromagaly issue.
I saw my haert?lung consultant (he was my doc for the embolism business and the one who diagnosed the acromegaly, but will not be involved in my palliative care r: the cancer) and he said if I want chemo he sees no reason wh I should not have it.

I don't know what to do. I think I may be being naive, in imagining chemo would extend my life. And it would only be naivity.... I fully accept the cancer diagnosis, am calm and my normal personality, behaviour is evident.
I also trust my palliative team, who assure me that at no stage of events will I experience pain as the cancer progresses. There again, am I being naive?

I would welcome response from anyone with experience or advice to offer in relation to either acromegaly or to stage 4 lung cancer.
I live in England, am 54yrs young. My only family is my 21yr od son, just graduated. He's my weak-spot...my heart breaks for him, the idea of his being left alone,

Thank you for listening, and my prayers are offered to all the other sufferers...and survivors.

 
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