Small cell diagnosis

Hi Tuffybanks.

Good morning and welcome to the prostate cancer family I am very sorry to hear about your father's diagnosis.

I was given the diagnosis of my prostate cancer last June 2023 and I was also told that mine was also "aggressive" but there was no mention of "small cell PC" 

I do hope that you will receive some more information on this from the many great people on here.

My consultant put me straight onto Hormone Therapy (tablets and injections) which worked very very well.

I am still on these now and we have been told that it will be for the rest of my life.

I have also been told that plan b will be chemo but my consultant thinks I am not strong enough currently???

I do hope that helps and if you need any further help/support please come back to me.

Prostate Worrier.

Good Morning Tuftybanks 

A warm welcome to the Macmillan Online Prostate Community. I am so sorry to find you here and that your dad has been diagnosed with one of the rare types of Prostate Cancer. Below are two links I have to this type of Prostate Cancer:

https://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/types/small-cell-prostate-cancer

and

https://prostatecanceruk.org/prostate-information-and-support/further-information/rare-prostate-cancer

I am very aware that this type of cancer is aggressive and the normal treatment plan is Chemotherapy from the start. i am sorry to say with it being an aggressive cancer it's one that tends to spread around the body very fast unless found very early.

The normal first line treatments for Prostate Cancer are docetaxel and if that isn't working cabazitaxel and there are other treatments further down the line. You would need to check with dad's team which type of Chemotherapy they propose to use as they all have side effects.

i hope this helps - I am sure further advice will follow but if I can do anything else for you please let me know.

Our support line is open on 0808 808 00 00 (8am to 8pm) and they may be able to offer further help and advice.

Best wishes - Brian.

Thanks Brian

I'll have a read of the links.

I cant remember the name of the chemotherapy he was offered but i know it was two types that he would have together every 3 weeks, 6 times. My fear is that the treatment will massively reduce his quality of life and for what! The dr said it would prolong his life by months not years so i would rather him enjoy the time he has left if thats the case but wondered if anyone had been through the treatment or in the same predicament as us.

Thanks

Fiona

Hi Prostate Worrier

Thanks for your reply, sorry to hear about your diagnosis. Initially they thought my dads was similar to what yours sounds like untill the biopsy showed small cell.

The inital prognosis was very positive and the consultant was great at explaining how treatable it was so fingers crossed your hormone treatment continues to work for you.

Unfortunately my dad seems to be one of the unlucky 2% that get small cell and theres not much known about it with it being so rare. 

Im sure ill find this forum helpful though

Fiona 

Hello Fiona (Tuftybanks)

Before I replied to you I ran a quick search of the Community but didn't find anyone with the same condition. I did name the main two Chemotherapy treatments as I could point you in the direction of people on these. I can't give you a decent answer on Chemotherapy myself as I am on Hormone therapy.

On a personal note - I am tempted to agree with your thoughts, at 82 you don't really want to lose the quality of life you have if it's just for an extra 3 months.

I do know we have some of our "senior" members of the Community on Chemotherapy and I do hope they see your post and you get some helpful advice.

Keep us in the loop and if I (Macmillan) can do anything for you please let me know.

Kind Regards - Brian.

Hi Tuffybanks.

Many thanks for your reply, I am very sorry to hear that your father is in the 2% of people who have the "small cell" thought !!!!!!

I can see that you have already had some great info and I do hope that you will receive more over the coming hours/days.

If you need me to search for more information online please let me know???

I do wish you both all of my best for now and the future.

Prostate Worrier.

Hi Fiona (Tuftybanks , very sorry to hear about your dad’s diagnosis.  It is a very tough decision and I am not sure what I would do in the same situation, so I really can’t provide advice.  My suggestion is that if your dad is able to make his own decision, just support him with whatever he chooses.  Best wishes,  David

Hello Tuftybanks , Fiona.

A warm welcome from a wife whose husband also has a rare aggressive form of prostate cancer, diagnosed at the age of 76. That was almost 4 years ago and was given possibly 6 months which was devastating. He is currently doing well and determined to carry on beating the odds. He had chemotherapy last year and completed it at the age of 80. Whilst not pleasant it was no where near as bad as he had feared. He was treated with Docetaxel on its own, although I believe that for small cell prostate cancer a dual drug is used to give the best control. Whilst he was having chemotherapy he felt pretty rough on days 3 to 5 of each cycle, improved on days 6 to 9, and back to doing normal things until the next cycle of which he had 6. Each cycle followed a similar pattern and we had a choice to call a halt to treatment at any time. Everyone reacts and responds to chemotherapy differently so your dad has a difficult choice to make. Earlier this year the cancer found a way round the treatment my husband was on and developed into a neuroendocrine form on the adrenal glands which was treated with a very targeted form of radiotherapy, along with other mets in his body. Our meeting with the oncologist today gave us hope that this this is working for the time being. What is important is that we still have a good quality of life and where there's life there's hope.

Your father may be put on hormone therapy to try and reduce his testosterone levels or block its action, thus starving the cancer of its food if he has small cell prostate cancer plus the more common adenocarcinoma. This treatment has had a greater effect on my husbands health than the chemotherapy did because it is long term with fatigue being the main one to deal with. If he only had small cell neuroendocrine prostate cancer then hormone therapy may not be offered.

I have attached a link on treatment for small cell prostate cancer which you might find helpful and is the follow on from Brian's link.

https://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/types/small-cell-prostate-cancer#:~:text=The%20main%20treatment%20for%20small%20cell%20prostate%20cancer%20is%20chemotherapy.

Our oncologists has told us that he still has more tools in the toolbox if necessary with the next one being nuclear therapy. He also emphasises how important it is for the whole family to have a positive attitude. We make the most of every day as we know that it is a bonus so enjoy the time with your father but take things at his pace.

Treatments for prostate cancer have come on in leaps and bounds over recent years and it might be worth asking if there are any trials.

Please come back with any questions and let us know what dad decides.

Thankyou so much for this. I am going to look at dads info and see if its the same chemotherapy treatment. I know he cant have hormone treatment as they said it doesnt work with the small cell cancer.

We are seeing a different oncologist on monday, the one he originally saw when he was diagnosed with what we thought was typical prostate cancer. He built up a rapport with him so hopefully a second opinion will give us some clarity.

Fingers crossed everything goes ok with your husband, it must be so tough on you two, i know we are all feeling it and just feel numb at the minute. 

Thanks for the advice its veryuch appreciated 

Fiona 

Thanks David. My mum said that it has to be his decision so we are just supporting him at the minute and trying not to.influence him either way. What a decision to make!.