Free to Breathe

Oncologist appointment possible stage 4 now

My mum had a follow up appointment with the oncologist today and it wasn't good news. Her PET scan results from Thursday are not back yet but he explained a bit more about the ct findings. He said that there is a small area on the right side adjacent to her spine which he thinks could be a metastases from the lung cancer or perhaps a recurrence of the breast cancer my mum had 6 years ago. He also mentioned that the ct scan showed there was some thickening at the top of her adrenal glands. His opinion is that it is from the lung cancer and explained that while it is unusual it is not impossible for this to happen so soon after surgery. He said that there was a meeting last week and the surgeon was very surprised that this has come up as he considers that he completely removed the cancer. He also explained that the treatment for lung mets would be radiotherapy and chemo if my mum is fit enough and told us that breast cancer mets are more easily treated and generally have a better outcome. I asked about the gene mutations and she doesn't have any unfortunately. I felt he painted a very bleak picture.

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MissyD1,

So sorry to hear this, I hope that you get the PET results soon and that it allows a good effective plan of treatment. The oncologist does sound like he is very thorough and this must be one positive to take away.

It does make me wonder if oncologists are better at reading scans when cancer is involved? I thought that the radiologists were the experts, but not so sure now. I'm assuming that the findings on the CT scan were not picked up on the original reading? Something worth bearing in mind if anyone is getting a second opinion from a scan.

Best wishes and thoughts for getting this treated.

Glynn.

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Hi Glynn

Thank you for your kind words, I can't believe this is even happening to be honest.

The oncologist said that the thickening on the adrenal glands and spot on her rib were noted but not reported. The ct scan she had was looking specifically for a pulmonary embolism as she had been admitted as an emergency with chest and back pain. These findings were not noted on another ct scan from 3 weeks earlier (when she had the second pneumothorax which didn't heal)

I am struggling to understand any of this as the scan was apparently also viewed by the respiratory consultant 2 weeks ago as he told my mum that her pain was inflammation and that all of her scans were clear. I feel she has been let down so badly.

Best wishes to you too

Debbie

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Hi Missy,

It seems strange to note such findings in someone with a known malignancy but not report on them? To be honest, I am not sure I know the difference between noting and reporting on scans. But is does concern me that such things can be missed or noted in a way that can cause them to be overlooked. I have done some reading and adrenals is one place that lung cancer likes to go to, as is bone. We can hope that the PET scan does call these out as having no significance and maybe we do get a bit over anxious when touched by cancer? I hope that you do not have to wait long for the PET results and that treatment can get started prompt, with a minimum of meeting NICE guidelines. It is all very well saying that the cancer grows slowly and delays don't have any impact, but this doesn't really make the patient feel any better.

If the PET scan is clear I would be looking for some reassurance as to how much we could rely on that result.

Have you got a date to get the PET scan results?

Best Wishes

Glynn

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After the proton therapy my husband had back in 2013, the cancer went to the brain, very small. He had Stereotactic radiation, then the next year he had a spot on his adrenal which was also treated with SBRT. MRI showed both were successfully treated. About a month ago another spot was found on his brain, very small and that was also treated with Steriotactic radiation. MRI this week.

Since the original lung cancer in 2013 was treated with protons, no one has been able to say for sure the area was still cancer, and most thought infection, irritation, etc, etc.

So now he is being treated with Keytruda since his bad experience with Opdivo. He is 5 days out from first treatment with Keytruda and feels great. I hold my breath every morning but so far, so good. Yes, the lung cancer goes to the brain and the adrenals. We feel lucky so far that his bones and other serious areas have remained cancer free.

This is a wonderful group of people and I enjoy the hope and encouragement expressed here.

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Thank you GMC1

I find this group a great support too, it has helped me enormously since my mum was diagnosed last year.

I hope you husband continues to do well on Keytruda.

Best wishes to you x

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Hi glynnbar8

I also find it concerning that the person evaluating the scan noted these abnormalities but did not report them and my mums respiratory consultant also saw the scan 2 weeks ago but seemingly hasn't noticed?! He put my mums symptoms down to healing after all of the problems she has had... I honestly think that in my mums case, the waiting for treatment has impacted her prognosis. Up until the point of surgery we were told both tumours were very early stage and not spread elsewhere, not even to the lymph nodes. she was noted to be in good general health and expected to make a full recovery from the surgery. I find it astonishing that due to a separate catalogue of errors she spent around 8 weeks in hospital after the surgery and not one health professional has noted her symptoms and considered that she may have metastases. I do plan to address these issues and others with my local health authority as I feel the standard of care my mum has had has been below a bare minimum expectation.

We have no date for the PET scan results but we're told to expect a phone call this week. I hope it's sooner rather than later. I am wishing and praying that it will be clear but the Oncologist seemed pretty definite in what he told us yesterday so we are expecting it to be a Cancer. Hopefully it won't be anywhere else and my mum can be treated.

All the best!

Debbie

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Hi Missy,

Let's keep hoping the PET scan is clear. It does sound strange that this "slow growing" adenocarcinoma has moved pretty quick. Don't forget that you can get copies of the scans, they also put the software on the disc so you, or anyone can view them on a PC. With hindsight I should have obtained second opinions earlier. It was so frustrating to know that I had a lymph node that was not significant but if it had been 1mm bigger it would have fallen into the suspicious category. Had I known that it had increased in size quite a bit from the previous scan I would have been shouting this out. Has the delay affected the prognosis, who knows, but from the first xray, this does seem to be moving fast if the oncologist is correct, so keep making the noise.

Keep focused on the immediate treatment!

Glynn

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Thanks Glynnbar8, I will stick with the positive thinking until we know otherwise! I will request copies of the scans too.

Were the changes in your lymph node between the scans picked up? What treatment are you receiving? I am glad that things are moving quickly for you.

We have been assured many times that a delay of a few weeks or months generally doesn't impact on treatment plans or prognosis as most cancers don't grow as quickly as you would expect. I really think my mums situation is quite unique / unusual and not everyone who has a delay in getting their diagnosis or starting treatment will have the same issues.

Wishing you well!

D

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Hi Missy,

The changes in lymph node between scans wasn't picked up as it was still less than 10mm, therefore was not mentioned on the reports. Given my symptoms and the fact that something was changing, I am disappointed that no one was prepared to go the extra step and be suspicious. I found that no one seemed to take ownership and I still don't know who should have if anyone? My GP ended up sending me to the chest physician after much protesting by me, the chest physician couldn't do anything as the scan was "normal" therefore the GP couldn't do anything further. It was only a drop in sodium that allowed me to get back into the system and eventually get diagnosed. In total not far off three years. My response to treatment was not good and it caused me a lot of issues. So at the moment I have decided to break from it. The oncologist has been good though, and it is a shame that he is the last in the line and gets passed on patients in a worse state than need be.

When you ask for copies of the scans, you can get them direct from the Imaging department, so no need to ask the consultant.

Keep positive though,

The last PET was pretty good!

Glynn

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Thanks Glynn

It certainly sounds as though you have also been through the mill and let down by our over stretched NHS. I hope that when you are ready to continue, the rest of your treatment runs smoothly.

Debbie

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Dear Missy D1. We all know that medicine is not an exact science. Different radiologists read xray differently

Xrays can be unclear. The oncologist sees one thing and the radiologist another.

I ask the oncologist to show me my MRI'S and to go over the radiologists report. Di I know how to read this? No. Of course not. I do however see some shady areas that are not as clear as the time before . There is always room for error but I do believe they all try to give us the best expertise they can. I am not in control so I leAve it to them. That is my philosophy. I try not to use energy over things I can't change.

Good luck

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Debbie, it's understandable that both your mum and you are upset. There appears to be a lack of communication in your mum's medical team, as well as different opinions about what the scans show. I send best hopes to your mum as her oncologist digs more deeply into her situation.

Anita

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Yes it does sound bleak, but at least now you know what you are up against. Hope your mom has the energy to keep fighting. Sending you a big hug.

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