Testicular cancer

Hi Poddy
so sorry to hear you news. I send you my very best wishes.
I can only tell you of my experience with my 21 year old son.
Last January he started with backache and pain in his belly - we even went to A&E with him once he was in so much pain. After several drs visits we had an appt for a scan on the 18th march, but on march 11th after yet another drs visit we had to go straight to A&E with a letter from the dr. They wanted to send us home and wait for the scan but as he was in so much pain I insisted they keep him in, The following day he had a scan - you can imagine my shock after just arriving home from the hospital to get a call from my son to say he had just been told he had testicular cancer.
As this cancer had presented itself so unusually - there was no lump - we were told it had started in the testicle but moved to the lymph gland and that was the cause of the pain.

He did the sperm bank thing and had the operation to remove the testicle and then we had a wait of a few weeks before he started a cycle of three chemo teatments. The chemo was called BEP (each letter standing for the name of the drug used).

On 8th August (the chinese think this is the luckiest 8.8.2008!) we had an outpatient appointment expecting to be told either more treatment or an operation or both - but were told the good news no more treatment and 3 monthly check-ups from then on gradually getting longer as time goes on.

He also had tests done before the chemo treatment - heart,lung kidney function etc and then had them done again after treatment. So they do keep a very careful eye on you.

The chemo makes your hair fall out and my son's did but it's now growing back with a vengence.

From my experience of this THING - keep asking all the questions you want after all it's your body. The fear of the unknown is often so much worse then the actuality of it all. We found the Drs who were dealing with us made all the time in the world to answer any questions we had. I also rang the Macmillan nurses a couple of times and they were helpful as was the cancerbackup nurse.

The shock of it all is immense but I am sure you will cope with this. It sounds as if it has been caught early enough.

Good luck on Tuesday and if there is anything you would like to ask then get in touch. I will be thinking of you as I am sure all the other people on this site will too.

Hi Boxy and thanks for the reply.

I am pleased to hear your son has been told he is all clear and wish him all the best and good luck in the future. Again thankyou for replying as I had been having a bad day today thinking about it. I have a good family around me and would like to talk to them more about it but I dont know much about it myself to answer any of there questions.

I think like myself there concerned about it speading to other parts of the body. My son to my surprise has handled this all well so far and has not realy said much. I feel so sorry for my son as he still remembers me having my first heart attack and he was 7 yrs old then, I worry if this might have any long term affects on him.

One minute i`m fine and think I can do this, then the next minute i am in tears thinking about what might happen. This is even more frightning than when I when to Papworth for a stent in 2003.

Hi again!
I'm glad you have a good family around you - my son wouldn't talk about anything for a long time and I could tell he was very angry. I told him you need people now more than ever and lean on people when you have to - you can do it for someone else along the line but now it's your'e turn. He has a marvellous girlfriend who has been like a rock - although she has a nursing background but gave up training. A little knowledge is a dangerous thing!

I can understand having the two heart scares and now this is the hardest thing to cope with. I can well remember how I felt at the start of my son's treatment. One minute you feel just about ok and then the next your'e not. It's so hard. Remember you will be in good hands and the drs are really doing their best for you.

You don't say how old your'e son is but I think he will be fine. These young ones are a strong lot!! I have two other sons aswell - both in their twenties and they have been like a rock.

Get Tuesday out of the way and then I am sure once you feel something is being done you will feel a bit better about it all.

Once again good luck with whatever treatment you will have and let me know how you get on.

Hi Poddy,

You have been through such a lot at such a young age. My husband had penile cancer last year, so not the same as yours but very scary all the same. He ended up with total penectomy in the end and is recovering from reconstructive surgery. I understand the need for information and support, so here are a couple of sites for you to look at, when you are up to it. They look really good, lots of people who have gone through the same as what you are going through now.

www.tc-cancer.com
www.testicularcancer.org.uk

Take care and let us know how you get on.

JG

Thankyou for your replys JG and Boxy.

I had my teste removed on the 26th of august and have been resting on a camp bed in the living room as I was allowed to go home the following day. I am now waiting for a appointment to have a CT scan done as the teste was cancerous,the nurse told me it is Seminoma.

I have also been told that my chest x-ray was clear and that two important bloods were normal BHCG and AFP which they said was good news.
I will let you know more after my scan and post a bit more information at a later date as it is a bit uncomfortable siting here for to long.

JG thankyou for the website as they have a lot of information for me to read as I go through this process. I`m still a bit scared about what is going to happen so I am just getting information on what I need to know for now.

Boxy My son is 11 years old and as you said correctly he has been a lot stronger than I expected, If it is effecting him he seems to be hiding it well. He is still looking forward to starting high school next week so that has eased my mind a bit as his SATS where 3 level 5`s.

Thanks again and I look forward to talking to you both again soon.

Hi Poddy,

I am a couple of months ahead of you, having had my op on 18 Jun. It took a while to recover from so don't expect to be fully up to speed again too quickly (although my wife started taking me out to get the paper 5 days after op ... there's sympathy for you!) and the drugs also knocked me out a bit.

I have read around the subject as much as possible, which might help. Some other websites to try:

www.cancerresearchuk.org
www.cancer.gov (US site for their National Cancer Institute)

If you are feeling ready for the medical jargon then the us cancer site 'health professionals' section has a large amount of detailed information.

Keep positive. If you want an inspirational read (perhaps slightly later down the line) then try 'It's not about the bike' by Lance Armstrong which talks about his battle with testicular cancer and going on to win Tour de France. I keep being told that this will be expected of me in the future.

Will

Hi Poddy,

It is good to hear from you. Good Luck with the CTscan, When are you going to have it?

My daughter is 11yrs too and starting High school next week... Very nervous and anxious...ME...not her...LOL

And thanks Will, I have been on that website you mentioned...the cancer.gov one but i had forgotton about it. It was good having another look.

Take care both of you

JG

Hi Poddy - glad the op is out of the way!! Good news about the x ray and bloods etc too!! Will be keeping fingers crossed for you when you have your scan. Please let us know how you get on.

In the meantime have lots of TLC and rest.

It doesn't seem like five minutes since the kids were babies - and now your's is heading off to high school!!

Best wishes

Hi Poddy

Hope you are managing to get out a little now after your op! My husband ahd testicular cancer this time last year so I keep thinking about it now. It turned out he had a Stage 1 seminoma. I guess you will find out fairly soon once they have looked at it in the lab. My husband was the strong one throughout the ordeal. I felt like I just went to pieces! Luckily he only had to have one dose of chemotherapy, carboplatin, which did make him feel very sick and quite weak, but having said that, he had it on the Friday then decided to go into work on the Wednesday i think it was! Needless to say he came home fairly soon after a long drive down the motorway! Very silly! But anyway, everything eslse was clear, bloods etc and has been so far. It doesn't stop me worrying tho but he doesn't seem to think about it at all now! At the time our dughter was only 3 and had just started at pre-school nursery and I could only think the worst was going to happen. But we have been very lucky and it sounds like you are too.

One thing i will say is, my husband had been to the Dr's about 4 times, at least, complaining of an uncomfortable feeling in his testicle, it was only when he changed Doctors to the one where I'm at did the ball start rolling, so to speak! Even after he had an ultrasound, the urologist he was supposed to see was off that day so it was just the nurse there. She called one of the other consultants to examine him who said he couldn't even feel a lump, which was true you couldn't and even tho it showed one on the ultrasound, to leave it a few months to see what would happen! We were horrified at this and said no way, just book him in for the op and get the blighter out. Good job we did!!!!!!

Anyway, I wont waffle on anymore. Any questions please ask would be very happy to help.

I`d just like to thank you all for all the support who have given me at this sad period in my life. I have been a bit up and down lately so it has been good for me to hear so many good and positive stories and also i`m not on my own dealing with this, so thankyou all for your kind and supportive words.

I have got to go for my CT scan on the 15th of this month which I suppose is a good thing that I haven`t been rushed up to Ipswich hospital for it. I must say I am still very nervous about that whole thing but haven`t been talking about it much this week as I want my family to try not to worry to much so it is nice to be able to talk to other people about it without upsetting my family.

My scar is healing up nicely the nurse told me when I had my dressing changed but it has been uncomfortable for me to sit down due to where it is, think it is my little pot belly lol. I have been eating like a horse again just lately which is good for me as I hadn`t been eating much in the last 4-6 weeks prior to the op. I am hoping to stop taking the painkillers etc after this weekend as I have been on 29 tablets a day including my heart tablets.

Thankyou all again and I will post back as soon as I hear anymore news.

hi again all,

I have just been informed that my results showed I have a mix of TERATOMA and SEMINOMA. I`m not sure if this makes that much of a bigger difference in treatment but I will know after the CT scan what treatment I will be having. I was told I will be monitored for the next 10 years starting with monthly then 2 monthly and so on with CT scans blood tests etc.

Is there anyone else who has had a mixture of the two who might be able to shed some light on this for me. Would be much apprciated if someone could give me some info on this as I am feeling very low about it at the moment.

I thankyou in advance for any replys.

Again, I know nothing about it, but you could try looking on Cancer Backup for the facts.

You will still get moral support and maybe some personal experience shared from others here of course.

You are getting closer to knowing the full extent of what is in store, but you are best advised just to deal with one thing at a time. The next scan and results, the next treatment. Then somewhere along the way you start getting fairly pleasant surprises.

All the best

Ruth

Hi Poddy - first of all so glad the op scar is healing nicely and good luck with the CT scan on 15th. Yes it is a nerve wracking thing having scans and waiting for results etc. You sound just like my son - not eating much at all prior to op and then eating like a horse. Keep it up!! I know when my son stopped all his painkillers it was quite something. A bit of freedom on that score - I suppose you still have to keep on taking the heart pills tho?

Son has just come back from a lovely holiday in Turkey where it was 40 degrees plus some days. So good to see him with a bit of colour and looking SO much better.

Once again good luck on the 15th and keep us posted.

hi again all, I have just noticed I have had a small lump come up on my neck. I will be calling the hospital tomorrow and telling them what I have found. I`m so worried now as I know you have Lymph nodes in your neck after doing some research and if it is that I dont think it is very good news.

I know I shouldn`t go scaring myself by reading everthing but from what I have been reading tonight I am scared it has spread right up to my neck through my lymph nodes and i`m now thinking this could be what has been playing my shoulder up as well.

What I wanted to ask someone is would other lymph nodes of showed up on the chest x-ray I had if it has got that far. Also does anyone know if it is in the lymph nodes would it of showed up in the blood tests.

I will post back when I know more.

Bye for now.

I have been to the doctors this afternoon and feel alot better for it. He told me it is a raised lymph node but is in no way related to my recently diagnosed cancer. He informed me it is most likely stayed like that from previous illness such as a cold, sore throat etc.

The one thing I like about my doctor is he has always been straight with me, no beating about the bush since I had my first heart attack in 2003 which I respect. He knows I like to be told even if the news is not what I want to hear. Also which I didnt realise is it works its way up through the lymph nodes from the Abdo to the neck, and not jump from the teste to the neck.

I will be posting more when I have had my CT scan on Monday the 15th Sept when I have more info. I dont think I will be looking at anymore websites until after then as all I seem to do is scare myself silly. I now understand why it is so important to take it one step at a time and not examine myself through the internet.

Talk to you soon.

Poddy.

I've just read right through your treatment details Poddy, and wanted to wish you very good luck for the scan. I know exactly what you mean by com- or im-pulsive reading being a bit dangerous, as we need to understand the bigger picture, not just get hold of one end and pull. However at least you went back to the docs immediately you found the lump on your neck. It's odd, isn't it, that what starts in our pelvis can end up at the other end. My gynae cancer DID reach my neck (or almost) but as your doc explained, it did it via an intermediary stage, as lymphatic involvement seems to like to have a bit of a rest along the route haha.

Anyway, very best wishes with the scan. xxx Penny

Hi Poddy - glad you went to docs and had the lump looked at and it's not to do with cancer. Anyway good luck with the scan.

This afternoon was in the living room when I heard a loud bang and couldn't understand where it had come from. Our house is on a country lane and on a bend and yes you guessed - an accident between a car and a small van driven by two brothers. The other car was driven by an older woman who from the way she was swaying about was very drunk and had caused the accident by going round the bend on the wrong side!!! Fortunately no-one was hurt. It amazes me that some people are hell bent on killing themselves and OTHERS by doing these things!!! I think at this moment she is in a cell sobering up as she refused to give a breath test.

And here we are fighting the good fight with no choice in the matter!!

What does anyone else think?

Hi Penny, I haven`t got much time on here now but will be keeping in touch with as many people as I can.

Hope to talk soon and all the best.

Poddy.

I just cannot belive some people who drink and drive. You read about it all the time in the papers and there was 3 young boys killed in a accident not far from here early this year. But the worse part is he got away with a fine, ( Where is the justice for the 3 who where killed there).

Some people dont realise what they have got til its to late. But it sounds like you had a eventfull afternoon lol, beats watching the Kyle show.

Will let you all know how things go with the scan, And thankyou all to everyone who has taken the time to reply.

Hi Poddy and all who's posted. It's getting quite chatty on here isn't it. Shame we had to meet like this tho! Thats life I guess.

Glad your scar is healing OK Poddy. I remember my DH was quite uncomfortable for some time when he had his op last year, he only had a week off work tho as he was determined the blighter wouldn't beat him! The painkillers did make him completely spaced out though when he took them at first. It sounds like you are having to take a lot of tablets anyway. i always think it's a good idea to drink plenty of water or watery squash when taking so many to flush it through your kidneys.

Hope your CT scan comes back OK. I know it is extremely worrying waiting for results. The post has come today with a brown padded envelope which i know is for the next appointment for the CT for my husband, as they send him the dye through the post! I can't really help you on the 2 types of cancer which you had removed. DH had stage 1 seminoma. He will be checked for 5 years, well 4 now as it was exactly a year since it happened. I know what you mean about scareing yourself by trawling the internet, have been there and done that many a time!!! Try not to do it, it definitly made me feel depressed and scared. DH just seems to have got on with his life and not fretted about it too much, he's been very brave indeed.

Anyway, I better go as it's our little girls first day at school tomorrow and I'm just cooking her tea!

Speak soon
Rachel

Hi Poddy,

I hope you don't have too long a wait for the CT scan results ... have they let you know when you will get them?

My tumour was a Seminoma / Embryonal Carcinoma mix which, although not identical to yours, I believe is treated in the same way. My CT scan did not show any signs of spread and I am just starting a surveillance routine similar to that your Dr described with a CT scan due in the next few weeks at the 3 month post operatation point, along with monthly X-rays / blood tests / examinations.

Pre CT scan barium drink ... yuk (my hospital does it in syrup vanilla flavour which was a struggle to get through and I gather there are other flavours out there)

Keep positive,

Will