Oncology dragging their heels

Hi JulieJLM!

Aw bless you! Sounds like you're going through it!

The waiting is always the worst bit! Its so scary not knowing!

It can sometimes take a while for the medical teams to make a plan as there's so many departments involved and they have to work out which would be the most beneficial and effective for each situation.

Definitely keep pestering them though, I had to have a hysterectomy for an unrelated problem and I struggled with illness and heavy bleeding before I had it done for a long time and I had to keep on calling and going to my doctor's to try and expedite the operation, it does help.

Meanwhile, there's always lots of people here on this forum who can support you and you can chat with, these guys have helped me immensely through my journey so far. I felt really alone and super scared before I found them!

Wishing you the best of luck with whatever the docs decide to do and I hope you get some answers soon! Keep us all posted and we'll be here for you!

 Kitty xxx

Thankyou for your very kind reply. It’s been awhile catalogue of having to push the NHS to do anything. It’s exhausting and scary. I will continue to push for the help my husband needs. It’s so upsetting that he’s paid into this system all his life and now that he needs timely intervention it just doesn’t happen. The nhs knows how aggressive this thing is and know the consequences of not acting quickly yet they just drag their heels and don’t even communicate the fact that they’ve made a decision to make him wait. They don’t give the criteria they use to make this deviant on even let him know! We have to chase them to find out they’re not doing anything for yet another week. Tired of excuses and lack of communication. A  sad you may be able to tell from my reply, I’m not impressed! Hearing from others in the same boat is helpful though. Thankyou. X

Hi JulieJLM,I’m so sorry your husband is still waiting.Unfortunately waiting is common.I was T3b G3 muscle invasive and classed as urgent.I waited over a month to see the surgeon oncologist and another for bladder removal.The logistics of getting the team together for major surgery must be a nightmare.This was explained to me at the pre op assessment.It doesn’t make it easy for the patient having to wait in pain and discomfort,it is a worry for everybody.Keep pushing and I hope you hear soon.Love Jane x

Thankyou for the information. We're well over the "62 days" to start treatment. My husband hasn't even got an appointment to see the oncologist yet for pre bladder removal chemotherapy.  The figures for your cancer are the same as my husband's. Part of the problem is the local hospital don't appear to have a urology ward. The hospital my husband was then sent to don't do bladder removal so he was referred to yet another hospital. Every hospital seems to "loose" the referrals e.g. the letter to the surgeon sat on the desk of  a surgeon who is off sick. If I hadn't have chased it, it would still be there. No communication and people not doing their jobs seems to be the norm, not the exception. I hope that you are doing OK. I do appreciate the time taken to answer my query. I wish there was a way that people could unite and put pressure on the government to change the system and the attitude to patients.

Thankyou again,

Love Julie x

Hi Julie,I agree it’s not good enough.I was already under cancer surveillance so I contacted the hospital when my symptoms changed.You do usually have to go further afield for cystectomy because it’s major surgery.They have to make sure you can get a bed in icu or high dependency post op and getting the team together takes time.It is incredibly frustrating and most on here have experienced delay at some stage.It is good that you are there to support your husband and chase these appointments up.I really hope you get somewhere soon.I had to bypass our useless health centre completely in order to get treatment and they were spectacularly unhelpful post op.I feel for you and your husband it’s a horrible situation to be in.Love Jane x

Thankyou for your kindness.

Love Julie x

Dear JulieJLM, I had a similar diagnosis to your husband's (3 years ago) and like him they discovered during the TURBT that the tumour had penetrated the muscle so they couldn't remove it all during that first treatment stage. I started oncology a few weeks later.

Since those days I have heard that they are struggling with the number of referrals they are getting, some of whom are being diagnosed very young and with very advanced cancer. I would guess that if the nurse you talked to said that your husband could wait it was because others who can't wait have been put forward before him. It doesn't sound fair but if that is the case there may not be a matter of negligence, but of prioritisation. 

You might find it worthwhile to talk to the hospital's PALS (patient liaison I think it means) group and to ask your GP to see if you can get a second opinion - maybe at a hospital in a bigger city where they have a larger Urology cancer team. You could also talk to the bladder cancer charity or MacMillan cancer line where someone with some medical knowledge might be able to help. I found the Macmillan bladder cancer pamphlets were very helpful with excellent illustrations and you can download them easily.

Also, it sounds likely that although the cancer has penetrated into the muscle it has not gone all the way through the bladder wall. That was how mine was. I had 4 cycles of Neo adjuvant Chemo from September to November and the operation to remove the bladder happened in mid January 2023 (after a short delay to remove a blood clot from my lung). The tumour was still contained inside the bladder which was successfully removed intact.

Since then I have completed 2 years of quarterly reviews with the oncology and surgery departments and am now on 6 monthly review for the next 3 years. I have also had a little immunotherapy post-op.I am fit and healthy (aged 72). I have given you some detail about my treatment journey in case that helps you.

I hope that your husband soon starts his chemo and the monitoring by the Urology surgeons.

All the best,

Latestart

Your cancer started at the age my husband is now.  It’s encouraging to hear that you are doing well. He was diagnosed on April 12th. That’s 2 months ago. He was given his introduction to chemotherapy appointment today for Friday but the actual treatment won’t start for another 2 weeks after that. IThe s had so much time to grow. I think you’re right about a 2nd opinion. The nearest specialist cancer hospital to us is 3 hours away. I think it’s worth asking but my husband is worried about travelling. He has no energy. Were you like that? Was your blood count really low too? If this is too personal a question please don’t feel obliged that answer. My husband only got the appointment for Friday because the gp contacted oncology and I had words with the department. Since the meeting with the consultant on June 4th, his treatment plan and doctor have been changed and it only came up in conversation this afternoon. No one had bothered to tell him. The plan was agreed at the meeting and now it’s all changed! We feel like he’s just being ignored. I’m in the process of writing to pals. I’ve also discovered that each time he’s referred to another hospital because the previous one doesn’t have the facilities, they start the counting of the days again. Technically, this is not what the nhs rules say. I would have written to nhs England about this but I’m not sure they exist anymore. Glad you’re doing well. Thankyou for your time. 
Julie

I am glad that your husband now has the dates for the prechemo meeting and the actual start of chemo. Those are important stages. Apart from anything else meeting the people treating him is very important. Plus, he'll need blood tests before each chemo session so they can see how it is affecting his body. For example, I had to have a different dosage at one point because I had a bad rash from the ordinary dose and needed steroids to dampen things down.

All of us understand that when you have cancer you want things done yesterday. But sadly there are more and more of us in that situation and hospitals may not be as efficient as we should wish. I'm going to tell you what this experience taught me in case it helps.

I was very fit when diagnosed and only became weak during the chemo. At that point I was dragging myself to the next session but managed to get to the end with my family's support. I became ill with heart problems along the way either from the chemo or possibly Covid, which might have affected what they were comfortable doing to me. Fortunately, they helped get me through that so I could have the operation to remove my bladder only a couple of weeks later than originally scheduled. If possible, your husband needs to get as fit as he can now - I should see what your GP says about that asap as he may need help or medication to do it. Luckily, I kept exercising throughout although I was able to do less as I became weaker.

My husband took me to every appointment (Uber or driving himself) public transport wouldn't have worked. He still does it although we can use the Tube now too. He says that he learnt a lot and sitting in the chemo ward taught us  more about people and was uplifting even. The nurses were phenomenal and so kind as they ran between us patients reassuring and monitoring the drip machines. 

At the very start, when I found blood in my urine I told my gp to refer me to a big London teaching hospital at once because I was not confident the local hospital would treat me as I wanted and I had seen how the big one worked for others with cancer. (50 years ago, in the north of England my mother, a smoker, died of bladder cancer after refusing to consult her gp. So I quickly sorted out what I wanted even though the cancer was totally unexpected - I hadn't smoked since she died.)

I can see your frustration with the NHS and it may help you to complain but the staff are as likely to be as stressed about all of this as you are. I would say also that the targets are just that, no one makes a contractual obligation to do anything at any set time. I also think we'd count the TURBT as the first major stage of treatment. They got as much of the tumour out of me at that stage as they could safely, like your husband, and then planned the next stages. This is not to downplay your need to get things done quickly but in case it helps to think of things like that.

We paid for our second opinion and that was mainly for reassurance to confirm that what was planned for me was correct. We then continued as planned. That meant building a good relationship with all the medics so that if I do have an issue they listen and help willingly. I cannot emphasise that enough. 

One thing that helps is that all my appointments, test results, letters etc are online in the hospital's website for patients so I can see what's when and where without waiting to be told. Does his hospital have a similar system or is it all on the NHS app? Staff may believe you are getting info that way so won't necessarily think to tell you personally or maybe even have time to do it. Letters in hard copy can take ages to reach one.

I know that at your stage it feels as if every second counts. But even so I would focus on getting your husband as healthy as possible before (and during) chemo, working out what treatment you want, where it should happen and  making friends there. 

I hope this helps, as I say it worked for me.

Good luck,

Latestart

Thankyou. I see what you mean about the turbt. We live in the north and nhs treatment can be very different to the south. “Urgent” doesn’t mean the same to the nhs as it does to us! I think we need to get a 2nd opinion to feel that someone is listening. That is a major issue. There was definitely a much nicer atmosphere in the 2nd Hospital than the 1st. The nurses, careers and tea ladies on the ward at the 2nd Hospital were kind to my husband. I really appreciated that. One doctor there checked on him 3 times in the night. The problem with the 3rd hospital is not the consultant my husband saw, but the time it took for the paperwork to be done, changing their minds about his treatment plan without telling him and just not bothering to sort chemotherapy. We haven’t got as far as meeting any other patients. That’s going to be at least a few more weeks. I chatted to a nurse this afternoon who told me about how hard it was to get cancer treatment for a member of her family. She is in this area. It really shouldn’t be this hard. I’ll remember about encouraging my husband to make friends at chemotherapy, when the treatment eventually starts. I’m going to try to persuade him to get a 2nd opinion for reassurance not because there was any problems with the surgeon that evidently is no longer his surgeon!  It’s really hard to be calm when the goalposts keep being moved. I feel so sorry for people who have cancer who don’t know how to challenge the system. I’m really glad you’re doing well. Hopefully, by this time next year, my husband will be over the worst. Thankyou xx