3 months ago I was informed of a new suspicious nodule in my left lung. Since then I have lived a mental nightmare knowing that its growth on the next scan would mean another cancer or more likely and worst, the distant recurrence of my first lung cancer (resected with my right lower lobe in April 2022). I felt so angry that only 18 months after being told that in my case recurrence was very unlikely and the NHS was not going to give me any adjuvant treatment (chemo not being effective would only help 5% of the patients in my case to avoid recurrence….), I was now told that this could be it : stage 4 metastatic lung cancer but vaguely told there would be some “treatments”... I had to consult a private oncologist in Oxford (as no one in the NHS had time for further discussions with me) He confirmed my readings that chemotherapy (because of my genetic mutation zlras G12v) and immunotherapy (because of my lack of Pdl 1 (0%) were unlikely to help much in case of recurrence and that there was no real treatment for me, I decided to start the Care Oncology Clinic Protocol (in London) and a diet to try to delay the progression of this possible cancer taking a cocktail of repurposed drugs to make my body as hostile as possible for cancer growth (that after 8 weeks I had to put on hold two weeks ago as statin was too toxic for my liver).
The VERY GOOD NEWS is that two days ago I was told that the nodule in my right lung was still stable and that the new suspicious nodule in my left lung was not visible anymore !
The lung specialist was furious when I explained to him what I had done. I had already told him (and the lung Macmillan nurses) 8 weeks ago in an email explaining my plan but obviously they did not bother to read this email. He told me that I had to choose between his way and others. Luckily my partner stopped me leaving the room and he explained that the Care Oncology Clinic was founded by the Pr.Stebbing from the Royal Marsden hospital and that the doctor prescribing my cocktail was one of the other oncologists of the clinic, bla-bla-bla. That calmed him down a bit but he was furious and upset that this cocktail might I have influenced the results of my scan by reducing the “ now assumed inflammation”. Exactly what I wanted for this bloody nodule to disappear:cancer or inflammation ? I am not sure but let’s hope it was inflammation as the next scan is in 6 months and results 7… I am waiting to get my blood tests liver and kidney results to see if my liver is back to normal and take a difficult decision to restart a maybe less aggressive CAC protocol. Difficult decision to do nothing to prevent the recurrence (more likely than the NHS want you to believe) or to do something but that could be damaging other parts of my body (maybe not as bad as chemo, anyway)…. I might be mad but I can not just do nothing and wait for it to come back.
Just wanted to tell my experience.
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Bibicata
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Sorry you've had such a stressful and anxious time with your experiences. I was told the same when I had my lobectomy and given my diagnosis in January 2011 that there was no evidence that chemotherapy would work for my rare type. Having met others who'd gone through it with side and late effects for other cancer types, I was thankful to have swerved those experiences. However like many I had symptoms within a couple of years that were checked out for suspected recurrence and for many on a 'active surveillance' watchful waiting pathway after surgery, there can often feel a lack of contact or places to go/talk about the experience when new symptoms or issues appear on imaging that may be inflammation or something else. learning to live with the unknown is something many of us have to do with varying degrees of success or anxiety dependent how near imaging/follow up might be. I was quickly put into annual follow up but once I became involved in the world of cancer research and learnt how few are detected when surgery is possible, I became more appreciative of the treatment I'd had.
Not all lung nodules are cancerous - in fact the opposite, the vast majority will turn out to be nothing like moles on the skin but inside the lungs. However that belies the anxiety and worry that many feel as the information can be hard to find and googling can send us into quite a tailspin. Like yours, many 'resolve' or disappear and turn out to be infection or inflammation driven so aggressively treating as if cancer with toxic or aggressive invasive treatments would be considered doing harm to patients.
I've personally experienced a similar response recently when I typed up a letter of experiences and investigations done without any results yet and took it to my GP who said he hadn't got time to read it and it would be scanned and put on my file. When I said that seems to have happened to the results of various tests from a recent almost 3 week hospital stay without anyone contacting me despite results' serious implications, he wasn't interested. Overworked shouldn't mean that patients aren't followed up properly. Having been admitted via emergency, discharged and readmitted by ambulance, those who requested the various tests (general doctors etc in AMU) are apparently where the results go back to. Heaven knows how results are meant to get to patients or referrals made where required.
After my lung cancer diagnosis, I read the book. 'anti-cancer a new way of life' by Dr Servan Schreiber and followed several of his suggestions about a better life balance on so many aspects of healthier diet, sleeping, social contact, keeping hydrated, work, etc without the toxicities of many anti-cancer treatments. I also found the book 'cancer is a word not a sentence' by Dr Rob Buckman helped me put many symptoms and worries into context.
There are agreed protocols for following up cancer patients and treatment in the first place including nodule management which may explain your consultant's response. Also there was considerable controversy surrounding individuals aggressively overtreating patients proved to have caused unnecessary harm in the recent past which may have contributed to his reaction. There are also many tensions in the NHS about patients who go elsewhere whether private or overseas for different treatments then expect the NHS to pick up and rectify or continue treatments that are not part of agreed clinical pathways so that may explain his 'you need to choose' comments.
fingers crossed for your results and hope your newly adopted lifestyle changes continue to benefit you. good luck.
I always asked to be told everything and ask to be sent a copy of the radiologist report And there is always a surprise. The lung specialist didn’t me about 2 other very small nodules (stable so already on previous scan it seems) as he thinks there are not worth worrying about (for now). I just hate discovering things like that after the so important consultation.
Let hope that everything stay stable and that nothing else appears in 5 months time.
Many don't see their report or if they do can be worried by things noted by the radiologist for future use rather than immediate concern. I remember being told by my respiratory consultant when he did a bronchoscopy after a CT and said the liver cyst is still ok so I asked what liver cyst and was told it had been there from the start of my experience some years earlier. One of the concerns about diagnostic. CT scans especially with contrast is that they show up things that won't develop and I was told the more they go looking, the more they'll find even if the majority will be benign, scarring or similar. For me, it's about understanding what does show up that impacts my health/life and getting timely response, information or treatment if relevant.
good luck and hope you can get on with your recovery and life and put any niggles to the back of your mind.
I found the book' cancer is a word not a sentence' by Dr Rob Buckman really helped me on that front when I had many symptoms (red flag as they called them) where recurrence was suspected although thankfully turned out to have other causes.
It is encouraging to hear that your lung nodule is stable and the other one is not visible, lung nodules can often be inflammation rather than cancer, and it is always advisable to continue with the current thoracic guidelines surveillance of them. JanetteR57 has provided an excellent and thorough reply, of which there is not much to add.
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