Mother with stage 4, consultant says they are not sure how to treat her.

Hi Julian1985, just read your post really sorry about your mum's  bad experience but confirms for me that my wife is not the only one having bad time with biopsy she had a ct scan early December which showed a tumor in lower right lung then pet scan on 18th December showed spread to Lymph nodes and to Thyroid gland and tumor is 7.8 cm.  So biopsy ordered and done last Thursday but they couldn't get a proper sample so meeting on Friday and ordered a aspiration biopsy on Thyroid gland,  this also failed to find the correct tissue so now have to wait until this Friday for a meeting to decide what biopsy to try next it's so frustrating having only one meeting a week as she can't start any treatment until type of Cancer is determined and she is very tired and in pain also we don't know how much worse the Cancer is getting while we wait. Best of luck to your mum keep at them and certainly try a different consultant if you feel that will help we only have one hospital within 60 mile radius so can't really afford to change but we certainly would if we could. David

So sorry about your wife and reading these forums has taught me there are many people going though these incredible experiences and we are not alone and against the wall. But it's tough. I would love to get my mother a private consultant but I don't think we can;t afford it. 

So sorry your wife has had to have the multiple biopsies, too. It's really frustrating, still no treatment and I'm worried just how fast the cancer is spreading while it is left to grow. 

My mum had her blood test on Thursday. what a farce! She arrived at Southend hospital at the right time and they had no clue what she was talking about. To cut a long story short, it took them an hour and a half to find the correct papers so she could have her blood test. It's just one frustrating thing after another! But she wants to keep fighting and I told her, look don't be shy, if you ain't happy with the current support from your consultant and cancer nurse, don't mince words, be polite but be honest. We're waiting for the blood tests results right now. 

Please let me know what hjappened on Friday! 

Hi Julian1985. Thanks for your very kind comments. So we had a phone call from the thoracic consultant on Friday afternoon and he confirmed what we already new that my wife has a form of lung cancer but they don't know what type. He has written to an oncology team to ask them to take over her care. (Could of done that a couple of weeks ago) so now we have to wait to hear from them.  I tspoke to him myself and  politely made it clear that I was not happy with the process so far and asked if i might be loosing her he just said they will probably give her radiotherapy which will stop the bleeding  (she sometimes coughs up blood) but otherwise its up to individual patients to decide whether further treatment was worth the problems that side effects would cause. This does not fill me with confidence  but like yourself I don't really have the resources to go privately as we are on fixed income pensions.  Have had any more results for your mothers blood test I really hope they move things forward for her soon if only to give care plan. I had bowel cancer diagnosed in July 2022 and I do know that a care plan does really help I had all my scans and tests done and started treatment within about 6 weeks  so i don't understand why your mothers and my wife's cases are taking so long.  I had radiotherapy and chemotherapy then surgery and am now Cancer Free although living with a permanent Stoma. Good luck for future. Dave.

Hi Julian1985  how are things with your mum I hope you have a proper diagnosis now and hopefully a treatment plan. We are no further forward our consultant telephoned last Friday and said yes she has a form of cancer and we know it has spread but he didn't know what cancer as biopsy hasn't worked so he is passing her on to an oncologist didn't give a name and now a week later we haven't heard anything back so time marches on as does the cancer. So much for cancer getting urgent treatment we first new about it last week of December and now 6/7 weeks later know nothing more. Best wishes Dave 

Hello, Dave many thanks for your replies and kind words. I'm so impressed you survived bowl cancer, congratulations! that's a hell of a thing to go through. I'm 37 and had testicular cancer in August, it took them 3 months to finally decide to remove the left testicle, afterwards, after a month, they randomly called at 6.45pm to tell me I was now cancer free, it didn't spread, and the uptick in my lymph nodes in the petscan was due to an infection and not cancer. Great news! But why call me at 6.45 at night and why no follow up appointment? Strange. 

The fact that we have both suffered through our own cancer and are now watching our most precious go through the same thing is a sobering thought. It's much worse, isn't it? My mother was going out of her mind during that period and now I am during this. 

I have no idea why all of this is taking so long for so many of us. It's now been 7 weeks since the first biopsy. The blood test results returned today: my mother cannot have chemo pills, will need chemo likely radiotherapy targeted on her ribs. The cancer nurse keeps saying if it wasn't for the rib they would operate because apparently they have got the tumour early but its just really aggressive so it has spread so fast, a few weeks or months earlier, and they would have tried to remove it. It's grim. She now has to wait until Next Tuesday, the 20th to see her consultant because "there is no one at the hospital this week." Whatever that means. 

IDK where you are in the country, Dave, but recently this hit the local papers, and it basically confirms that my mother is living in one of the worst parts of the country to get treatment for this, but I fear it's not that much better elsewhere right now and everyone is feeling the strain. 

We are in Southend-on-Sea which has the worst lung cancer rate in the country apparently. 

NHS Mid and South Essex cancer waiting times worst in England | Echo (echo-news.co.uk)

Please let me know how things are going and don't be too polite enough to call the hospital every day, every hour. Who cares. I badger them and at least with our cancer nurse she always calls back, but speaking to the consultants is like getting a evening with the Pope! 

Hi Julian well you must of been terrified when first told of testicular cancer well done you for getting through it. When I had my surgery they had to remove my anus/rectum and sew up the space with pigskin wife reckons I've been grunting ever since. Strangely my wife had a bowel problem for many years and so our surgeon did a bogoff and gave us both Stomas on the same day. It's good that your mother now has the beginning of a treatment plan but such a shame that nothing is happening yet she must be so scared and worried as you will be yourself.  We do now have a date to see an Oncologist it's Monday 19th  Feb but As they still haven't had a successful biopsy I am not sure if we will get a treatment plan then. The letter from Thoracic consultant arrived today Full of strange terms I had to lookup but basically she has squamous stage 4 with spread to lymph node's .which propably means it's inoperable and looking at other people's stories on here I am beginning to fear the worst. I read the article about cancer rates in your area that's pretty bad. We live in Falmouth, Cornwall and my treatment 18 months ago went very quickly but it all seems to of slowed down now don't understand how there is no one at the hospital this week for you. I am 71 and my wife is 69 but we don't feel ready to end our story yet we've been married 48 years in April and really want to make the 50 and beyond. Really hope you both get better news on Tuesday 20th please let me know how things go. Dave