Still no results from scans....

Sorry for having to wait for scan results..the anxiety is overwhelming and it triggers other symptoms in me. My way of coping is knitting playing games with my husband and spending time with friends.  Keep busy as much as physically possible.  The still of the nights are the worst waking up and obsessing about where is the cancer in my body. I feel some control over my situation by writing letters to my husband daughter and 2 little grandsons.  I write from the perspective of sharing my feelings for them and giving my grandsons 2 and 7 a roadmap to becoming a positive member of society and sharing my values and beliefs along with life lessons. I feel empowered knowing that when I am gone I have left behind a gift to comfort every loved one.

i have spent the past 3 months getting CT and PET scans with contrast and radioactive agent.  My body lit up in both my lungs lymph nodes in the chest and a mass on my pulmonary artery along with the surgical bed of my pancreas and my liver and one breast.  They did biopsy of breast negative, biopsy of right lung negative, robotic surgery on left lung removed 2 wedges on 2 masses , 4 lymph nodes and a mass on pulmonary artery all negative for cancer! I am 1 week post surgery but feeling great knowing I am cancer free.

Do not despair over scans as they were 100% false positives in my case.  My doctor also does MRDNA tests on my blood plasma every 3 months against the original tumor sample of colangiocarcinoma of the bile duct an extremely rare and agressive cancer. They can do this test for lung cancer as well. The company is Signatura and the test name is Natera. They are located in California and you can request this from your doctor in the UK first test result takes about 1 month with successive test results in 1 week or less.  It will find cancer 3-4 months before it shows up on a scan.

Sending you hope from New York City. Be well and keep the faith

Packaging Expert

Hi Tillyboo

From my experience of going through the Lung Cancer diagnosis/treatment process, there was always a 2 - 3 weeks wait before I received the results at my next appointment with one of my Oncologists.  The radiographers who  review the scans and write the reports are forensic  both there examinations of the scans and the detail they provide in the reports to the Oncologists.

 I always found this high level of scrutiny reassuring.  

You say  that Hubby is meeting with his Oncologist the coming Thursday, so surely he will get the results then?  Isn't it best he gets the results in a face to face meeting?

I wish you both the best possible outcomes.

Kegsy x

The last time he had scans, he didnt get them at the pre treatment onco meeting. The results took 5/6 weeks & onco rung with results. So no idea if results will be in this week, as its pre treatment checks onco chat & following day is treatment day.

Hi, I don’t know if this helps or not but my partner is stage 4 palliative care and has just waited 3mths for the radiologists report on his scan. They told him there was a 6wk backlog. He’s with ing Cross. I can empathise with you from a carers perspective, the effect on my partner, not knowing, fearing the worst… it’s feels almost inhumane, and we can’t fix that or make it better. He copy exercising, keeping busy, but inevitably it is hard not to worry during the sleepless nights and then all the emotions flood out. But if I’m honest, none of this is easy. Love and prayers Rae

Well TBH I'm more angry now after yesterday. The results were in last week & yet they still had him for pre treatment bloods etc & see onco. So when I rung about scans on Monday & told they were ready. We just presumed all was ok. But to put him through all the pre treatment trsts for treatment day & sit in room chatting away about how hes been, no cough, no pain, steady weight etc after all thatvto be hit with " as for scans disease progression stopping keytruda & starting 2 chemis pemextred/carboblatin ( I think they called) I dont see why last week we werent called un, they kbew how anxious he was.

But reading up hes only had 4 keytrudas every 6 wks & the first scan was good after 2 infusions. The cyberknife worked almost straight away on his brain. I asked if its pseudoprogression with keytruda & was told no.

It was all to quick & we were stunned, hescalso on a trial called STRIKE & something to do with measuring in timelines with keytruda? I honestly cant think what was said, as he was taken off with research nurse for tests after being told sorry no more keytruda.

Reading up on this mix of chemo I dont think he'll cope with side affects if they are as bad as they read.

None of it makes sense. So I'm ringing Monday & requesting a call with an oncologist. As yesterday was too shocking to remember.

He as no symptoms eating ok put weight on, but if hes going to be pumped full of something, which sounds like hell, I'd prefer to reasess.

I cant find anyone who as had this mix of chemo just to see how bad it is. Immnunotherapy had a few side affects esp after having radiotherapy on spine & zometa.

We simply werent prepared for yesterdays news & the link to the trial & the cost?

So my shock as turned to anger. My husbands clueless doesnt want to talk about it, but its me having to make sure hes ok monitoring etc no kids or help to fall back on & I just think its too much of a responsibility for me & once chemo starts will be trapped watching him 24/7. Its been bad enough the last 6 months watching & monitoring, but this treatment sounds hell & I'm literally worn out, cant eat sleep etc

When onco said "disease progression" we thought its spread to other places, but just grown slightly in lung & spine, but didnt say how much in spine as nothing to compare it too which made little sense. All I know is lung was 5cm 9 mths ago first CT & scan 3 wks ago said 7cm spine 4cm but no idea how big that was at start & brains purely a dot.

Trial nurse said its not aggresive cancer, but still stage 4. So unless I find some whos had this treatment, which takes up to 5 hrs to give along with zometa, I think we need another meet with onco or at least a call.

Sorry for the long post, but wen you think alls ok & no symptoms & bombshells dropped, we were numb....