Petrified Daughter

Dear Sarahbake,

Im sorry to hear about your mother. Cancer is scary and can kill us. But it sounds as if your mother has some options.

My Mum had bladder cancer too, many years ago. But in those days there were few treatments. Now there are many more things that they can do.

It sounds as if the oncologist is going to use a number of things to help your mother. That is good news. My oncologist has always been very supportive and has worked hard to ensure the best possible result for me. I think that is typical of oncologists and I expect your mother's will be just as good as mine.

And the fact that something has only just been approved here in Britain doesn't mean it hasn't been used successfully here in trials and elsewhere before this. New treatments are coming into use all the time and they are having good results with them.

For example I had chemo plus bladder removal and then a newly approved immunotherapy drug. 3 years later there is at least 1 newer immunotherapy drug in regular use since then.

Surgery would remove the cancer still contained inside the bladder. But it would do nothing for the lymph nodes. The treatment they are offering is to attack the disease wherever it is. And hopefully it will work well. I'm confident they will be doing their best.

It may be tough for your mother and for you but they are doing it because they want it to work.

We all want to be told we are cured. So your oncologists words may sound scary. But I think it is fair to tell you that bladder cancer can recur even after bladder removal and other treatment. However, when it does there are generally things they can do.

So please try not to rush to the worst possible conclusion. I hope that your mother will find the treatment keeps her healthy for a long time. There are people on this forum who aren't 'cured' but have been living a decent quality of life for years and hopefully one of them will be able to reassure you.

And nobody can guarantee how long anyone can live. Personally I aim for 5 good years after my operation. And if I manage that, I'll be looking for another 5. What I try to do is to live as much as possible in the now rather than delaying things for the future.

Finally, please don't just Google at random. The trusted sites like Macmillan (which has great booklets on bladder cancer that are downloadable), Cancer Research (ditto) the NHS websites and Action on Bladder Cancer are all safe to read. Otherwise, people who really know little to nothing about the subject can go into things in an irresponsible way and sensationalising things, which can be unnecessarily frightening.

I hope that you feel a little better after this. And please tell your mother not to give up. Everyone here will try to support you as she goes through this treatment. Don't hesitate to talk to us if there are things you don't understand or want to ask

All the best,

Latestart

Hello Sarabake, your reaction to your mother's diagnosis and the scheduled treatment is entirely natural and understandable. Cancer is something that none of us on here liked to think too much about before it entered our lives. At first, on hearing the dreaded word, we recoil in shock before beginning to refocus on a future modified by medical tests and treatment. As Latestart has said in her excellent post, it is best to steer away from Google. Best to use the information resources available through Macmillan and the NHS and try to proceed a day at a time as the situation develops. The future is always difficult to predict even for the medical specialists who work with cancer patients every day but, by giving your attention to the here and now, you can absorb and appreciate more as the future unfolds. I was diagnosed with bladder cancer in 2017. I was unable to undergo major surgery or chemo because a significant heart murmur was discovered during pre-op shortly before the planned TURBT, causing it to be cancelled just hours before it was due. A plan B soon emerged: Radiotherapy. This helped to control excessive bleeding from a 7cm bladder tumour for a few months. I relapsed in early 2018, was rushed to hospital looking pregnant from a complete blockage of my urinary system (I'm male!). During the next week, blood transfusions could not keep up with my blood loss. My son and daughter were told that I might not last much longer than a week. A more optimistic nurse offered a month. I've mentioned this because a) I'm still here, living independently and driving etc. b) Two subsequent emergency TURBTs in 2018 slowly brought my symptoms under better control; c) I still have a slow growing lesion in my bladder which is being managed by palliative care i.e. a Foley urethral catheter to prevent my bladder from expanding or contracting and thus reducing the risk of bleeding.   I cope with this mentally by living for each day. Nothing spectacular, just quietly appreciating the the little things e.g. My son and daughter (both now in their 40s), beautiful local scenery and garibaldi biscuits .  

Keep posting and we will do our best to help you to maintain morale whilst the medical experts help your mother. Love from  Ray x      

Hi Sarahbake,Welcome to the group.I hope you will find it supportive.Best wishes Jane 

It's natural that you are scared - we are all fearful of the time that we will lose our parents. Your lovely Mum has a cancer that is not curable, because it has spread outside the bladder, where it originated. However, they are treating it and new treatments are coming along all the time. They will all have gone thorough trials before being approved, although sometimes patients are offered a chance to take part in a trial of a potential new tretament. No-one can say how long the treatment will keep her going, but no-one can predict what may come along at any time to shorten our lifespan. 

Make the most of the time you have, hopefully a long time yet. I know easier said than done, but try not to spend time worrying, which won't make any difference, other than to make you all miserable. Hopefully the treatment will not make your Mum feel too unwell, so that she can still enjoy family life. Very best wishes to you.

Hi Sarahbake, 

I am so sorry to hear about your mother and I hope the treatnent works well. There are very good sources of infornation on this site, at Cancer Reasearch and Fight Bladder Cancer and suggest heading there and not reading everything at once.  

We are all here with something big in common but that the knowedge that we can reach out here and together can talk through many of the challenges ahead, step by step I hope will be bigger. 

All the very best.