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To ask for your experience of diagnosis and treatment of lung cancer?

(31 Posts)
Trainsandsewingmachines Mon 25-Mar-19 08:03:08

I think a close family member is likely to receive a lung cancer diagnosis this week.
She’s not had a biopsy yet, just a ct. Can diagnosis be made from this alone? And how long is it usually then until treatment begins? It’s come out of the blue really so everyone is feeling a bit.

SconesandTea Mon 25-Mar-19 19:42:14

I'm sorry to hear OP, I'm afraid I don't know the answer but The British Lung Foundation may have some information on their pages. Bw flowers

Myusername2015 Mon 25-Mar-19 19:49:38

Hi; my mum had this. She didn’t have biopsy it was diagnosed from scans (but it was a secondary so already very advanced) she started the chemotherapy the next week.
I think it very much depends on whether the cancer is a primary or secondary; for my mum surgery wasn’t an option.
Second the lung cancer or Macmillan website. Sending you flowersat this horrible time.

jacks11 Mon 25-Mar-19 20:01:57

Hi OP

I'm a Dr (though not respiratory physician or oncologist). The CT scan can confirm the presence of a tumour, and whether there are any metastases (spread of the tumour). CT scans can give a suggestion of the type from the appearance on scan, but they aren't 100% accurate in all cases. The biopsy can give what we call a "tissue diagnosis"- this means confirms the exact type/origin of the tumour and can also provide information as to how advanced the tumour is, as well as looking for any genetic markers and so on. This is important when it comes to planning treatment (which chemotherapy the tumour is sensitive to, for instance) and prognosis.

Trainsandsewingmachines Mon 25-Mar-19 20:04:38

Thanks.

She has spoken to her gp this evening and he has seen the chest x ray but not the ct. He said the chest x ray had a single shadow of just over 2cm - so if it is cancer it sounds like it is confined to one place at the moment?

jacks11 Mon 25-Mar-19 20:05:33

Just to add- in agreement with a previous poster- the need for a tissue diagnosis is dependent on the stage of the cancer. If it has advanced to the point that surgery or targeted chemotherapy/radiotherapy would not be an option (as opposed to palliative- e.g. with an aim to slow growth/relieve symptoms), then they wouldn't want to do the bronchoscopy to get the tissue diagnosis, as it would not provide any benefit to the patient because it would not change treatment.

LakieLady Mon 25-Mar-19 20:09:00

My friend had a tiny (2mm, I think she said) stage 1 tumour. A third of her lung was removed, she didn't need any chemo or anything, and she did a 3-mile walk that included a 400' climb about 4-5 weeks later.

She went private, though, had med insurance through her job, so it was all done ever so quickly and possibly differently from how the NHS would handle it.

She's just coming up for 9 years cancer-free.

Trainsandsewingmachines Mon 25-Mar-19 20:11:54

Actually private medical care would be an option, I guess we will have to see what the outcome of the rapid referral lung clinic is. I feel slightly more optimistic as there’s only one shadow rather than there being lots of masses.
If there’s just one does that make it less likely to have spread?

sarie2468 Mon 25-Mar-19 20:12:24

My DM had a 1cm tumour in her lung last year, they had to book her in to biopsy it before it was confirmed as cancer. Once they had the biopsy (2 weeks ish later) she was booked in to have the tumour removed. This involved a 4 day stay in hospital and isn't an easy operation, but it was successful.
She found she was feeling better within 5/6 weeks of the op, however still gets a bit breathless a few months on.
She has since been for a scan and another shadow has been found, they said it is too small to biopsy yet so we have to wait 2 months to see if this grows.. fingers very tightly crossed.
I totally understand how you feel, its been the worst time in our lives. The NHS have been incredible however, and should it be confirmed as cancer they do everything possible to rush things through (in our experience).

MonteStory Mon 25-Mar-19 20:14:22

jacks11 This wasn’t my experience - my mum had liver mets but still had a biopsy to find the best type of treatment.

OP if the gp has only seen chest X-rays then they don’t know whether the cancer has spread, you wouldn’t necessarily expect to see several tumours in the lung.

Currently going through this with my mum (1 year post diagnosis) so feel free to pm or just vent on here!

Sugarformyhoney Mon 25-Mar-19 20:19:53

Hi my DM was diagnosed with lung cancer due to bone pain which progressed and was extremely painful. Was given a chest X-ray which was clear and a CT later diagnosed a lung tumour that had already spread.
She had a tissue biopsy but sadly died before any treatment as the disease was very advanced and Dm was very ill when discovered.
I’m sorry to hear your news

jacks11 Mon 25-Mar-19 20:20:47

OP

He said the chest x ray had a single shadow of just over 2cm - so if it is cancer it sounds like it is confined to one place at the moment?

I'm afraid you can't really tell from the x-ray. It can tell you there aren't any more "shadows" (i.e. tumour) in the lungs and unlikely to be any lymph nodes in chest/mediastinum (small ones can be missed on x-ray). It can't tell if there is spread to anywhere else (e.g. liver) because not only was this area not x-rayed, x-rays are not great for looking at spread of cancer.

sarie2468 Mon 25-Mar-19 20:21:37

Agree with MonteStory - you would need a full body scan in order to see if the cancer has spread anywhere else. the cancer had already spread to my DM brain which was picked up on a MRI scan. This has also been successfully treated.. however we have been informed that she is a ticking time bomb as to where else it could spread. This does result from the type of cancer that she has, its very fast growing.

AndNoneForGretchenWieners Mon 25-Mar-19 20:23:07

DH was diagnosed with lung cancer nearly 2 years ago, it was a particularly aggressive tumour that doubled in size within a few weeks. He had surgery to remove his lung (despite it having spread to the lymph nodes) and it bought him another year.

BUT. He was diagnosed at stage 4 and told it was terminal (following admission with pneumonia), he had been asymptomatic prior to the pneumonia. We always knew it was going to kill him, we just didn’t know when. He passed away in February this year, after it metastised to his brain.

Lung cancer can be managed though, even if terminal. At a support group we went to, we met people with the same variant of lung cancer who had been living with it for years - they had all had treatment and were being monitored by oncology.

user1471453601 Mon 25-Mar-19 20:26:06

I had an xray which led to a CT scan when lung cancer was diagnosed. I then had biopsy (needle in the lung via my back). That told the Drs what type of lung cancer I had. I then had a PET scan to determine the spread. There was none (I was one OF the lucky ones).

I was told they could operate, with a view to a cure. If the tumour wasn't attached to my aorta. If it was, the operation would end there. Lucky again, it wasn't. The tumour was removed and I am now nearly ten years clear.

I know (believe me, I really know) how lucky I have been. I savour every day I have.
I wish your family member the level of luck I've been fortunate to have

jacks11 Mon 25-Mar-19 20:35:13

Monte

Maybe I wasn't clear, I'm not saying that where there is metastatic disease that tissue diagnosis is never necessary. In your Mum's case I presume there were treatment options available- the biopsy helped decide what would be best. In cases where surgery and treatment isn't going to be an option regardless of the tissue type, a tissue diagnosis will not add anything. In cases where limited treatment/palliative treatment only is planned (e.g. palliative radiotherapy for bone mets causing pain or instability), a tissue diagnosis may not be pursued.

drogon1 Mon 25-Mar-19 20:38:13

My mum had it. Her symptom were a swelling of her face due to the tumour pressing down on something (im not sure what). A scan showed the shadow and a biopsy confirmed small cell lung cancer. She had chemo and radiotherapy and 5 months later the tumour had become undetectable on scans. Unfortunately her face started swelling again not long after and it turns out she had ovarian cancer but that diagnosis wasn't made until after she died. However, the hospital said that the ovarian cancer was likely to have been another primary cancer and she was just very unlucky. If not for that I believe she'd have been here today after the lung cancer. My thoughts are with you at this time OP

drogon1 Mon 25-Mar-19 20:39:14

Apologies, I meant to add that after diagnosis she started treatment that night.

Trainsandsewingmachines Mon 25-Mar-19 20:39:57

How long is it usually between biopsy and surgery? Do they move fast?

BlackSatinDancer Mon 25-Mar-19 20:40:10

My relative had a CT scan which showed up nodules on the lung and then had biopsies taken. I read they are often non-malignant but this didn't turn out to be the case. He had Small Cell Lung Cancer which had spread to the liver and oesophagus. A previous scan 12 months earlier showed nothing.
In his case it was very advanced and he lived less than a month from when he had the scan. Others are far less aggressive and can be treated successfully.

I wish you and your family member well and pray for a good outcome.

ComeOnGordon Mon 25-Mar-19 20:46:48

I work in this area - a CT is usually the first step but is normally followed by a bronchoscopy to get the biopsy sample and a PET-CT to check if it’s spread. Pathology results normally come back in a couple of days and the treatment can be planned around the results of everything.

Depending on the staging (how big the tumour is, if it’s spread to the lymph nodes and if it’s spread anywhere else) will decide the course of treatment. If it has spread round the body then palliative chemotherapy +/- palliative radiotherapy will be the usual care.
Otherwise it’s either surgery +/- chemo & radiotherapy or the other way around. It can take a few weeks for surgery to be planned as they need all the results to be there normally before they proceed.

Lung cancer treatment has progressed in recent years so a biopsy is standard now so that the treatment is appropriate for that type of tumour

Trainsandsewingmachines Mon 25-Mar-19 20:48:25

Thanks *comeongordon’ - it’s good to have an idea of what might happen although we are trying not to cross too many bridges. It’s hard though. I always feel better kind of getting prepared with information.

Trainsandsewingmachines Mon 25-Mar-19 20:48:41

comeongordon

Home77 Mon 25-Mar-19 20:59:17

A relative has this and they did a tissue biopsy which showed they could have targeted therapies in a clinical trial despite it having spread. She's doing quite well on it a year later, tumours have gone in one lung. She has an ERCK mutation I think it is called. they also did a repeat biopsy as those often mutate to a type which can be traced with another targeted treatment called Osternib (something like that) so there seems to be options even if surgery is not an option.

IAmAPersonToo Mon 25-Mar-19 20:59:35

My mum recently had it.

She had a terrible cough which was a symptom of the lung cancer - it was diagnosed very early and a very small tumor.

It was through the full body scans for that that they discovered she had an advanced breast cancer (also a primary cancer, no spread in either).

It was completely symptom free and in an area she’d not have felt the lump - her Dr said developing lung cancer with symptoms actually saved her life or the breast cancer would probably have killed her before it was found.

She’s now in remission from both.

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