Diagnosis and treatment update

That doesn’t sound a pleasant experience! Well done for getting through it and hope the results come through very quickly for you! Keeping everything crossed and thinking of you! Let us know?

Hi, 

This is very similar to my position except they won't do the lung biopsy on me due where it is located so I can't get any accurate staging.

The chemo I am on treats both womb and lung cancer at the same time so chemo could melt your lung cancer too.

I am 'assumed' to be be terminal but will probably never know without a biopsy which would tell if it was primary or secondary.

It sounds like your Oncologist is taking a similar approach to mine, chemo to treat both cancers and possible radiotherapy if lung is primary and needs a different course of action. Good Luck.

Oh i am sorry you are in the same position - this was the only one they had a chance of sampling from but we will see if they got enough; are they scanning you regularly? 

Had PET Scan in July after hysterectomy and just had one after 3rd chemo cycle two weeks ago but not discussed results with Oncologist yet. Even if responding to treatment, it won't give me an accurate stage as still could be primary or secondary on lung. It's all very frustrating but all I can do is keep fit, positive and live life to the full.

Thanks Magic - the lung people said a PET scan wont give any more info so haven’t don’t that; and yes am keeping going - keen to book a holiday at Xmas so at least when we know what is and isn’t happening we can do that. Getting insurance without a conclusive diagnosis one way or the other seems to be very hard

Hi Tangle

I am sorry that you are still in limbo regarding the staging. The lung biopsy sounds not nice. Well done for doing it. I hope that you have recovered from the biopsy and are feeling more comfortable. 

I hope that you do not have to wait too long to get a firm treatment plan. I had both chemo and radiotherapy and although it is scary to be told you may need them, I did find that both were doable. It was the unknown that was more scary. Once I had the plan and had got the first ones out of the way, things felt a bit easier. 

Jane

Thank you all - unfortunately the results of the biopsy were inconclusive; they only got normal lung tissue which may mean there is no cancer, there is primary lung cancer or there are lung mets, we are no clearer. they now want to remove a wedge of the lung. I feel like i have entered a parallel universe - major surgery when we don’t even know it’s cancer. Am going to have to think about this but in between time i still don’t get brachotherapy as the lung dept is in the lead and wont agree it. Am deeply unhappy about that as seems to be running a needless risk and there is time to do it.

Hi Tangle, I’d suggest you contact PALS and register that you’re unhappy with what’s going on. 

I am sorry that it did not go to plan. I totally understand your point of view.

I wonder whether it is worth speaking to your GP to find out whether they can in anyway intervene or at least get some sort of plan in place. 

Perhaps consider contacting PALS

What is PALS (Patient Advice and Liaison Service)? - NHS

The Support Line is also there and they may also be able to make some suggestions, if you feel talking it through would help.

Jane