16yr old son just diagnosed and I am petrified

[MargaretB]

Hello
I am so overwhelmed with fear I don't know quiet what to say. Last week my son had an ultrasound due to lump the size of a cricket ball in his right testicle, within 48hrs he had tumour and testicle removed and with a diagnosis that the tumour was cancerous. He had ct scan Thursday and we are now waiting to see if it has spread. I just don't know what to do, I am very positive around him but in my quiet alone time I can't stop crying, I am so scared for him. How do we cope?

[Paul54]

Margaret,
I am so sorry your son and you have to deal with this. As a dad of two sons only slightly older than yours, I can fully understand what you are feeling. You have to take things one step and one day at a time. Stay positive. Cope by being strong, positive, and the same parent who raised your fine son.

Several other tests should have been done or should be soon. One is a blood test to look for tumour markers, chemicals that indicate partly what kind of cancer cells exist, and partly to give a clue about spread elsewhere. Your son should have CT scans of his pelvis and abdomen, and a chest xray. I doesn't hurt to be a bit naggy about getting the tests done and read. Can you tell us what the pathology of the tumour was, what kind of cells?

Once all those puzzle peices are put together, doctors will work out treatment options. And there are generally many options. and the treatments vary largely according to cancer cell types. We always urge getting second opinions from centers of excellence. Get copies of all reports and keep very thorough notes.

Whatever you may have heard about TC being very treatable and survivalable are true. Many young men and their parents have been through this forum and are doing very well. Can you tell us a little about where you are and who you have seen?

[Scott]

Originally Posted by MargaretB

How do we cope?

The LIVESTRONG mantra sums it up: "Unity is strength, knowledge is power, attitude is everything." Lean on family and friends — including us. Learn as much as you can about what to expect. Be confident that better days will come.

[DianeE]

Margaret, I'm so sorry you have to go through this. Cancer is a scary and horrible disease and being the parent of such a young cancer patient can be
especially hard.

Take a deep breath.

You will cope because you really don't have a choice. Cancer is now a part of your son's life, which makes it a part of your life.

Since your son is a minor, you will be able to be involved in his treatment which
will give you the power to make sure he is getting the best care available. Learn as
much as you can about the recommended tests, the stages, and the
treatment options.

I remember the fear when my son was initially diagnosed, but as I learned
more about his disease, the fear was replaced by determination
to help him fight the battle in any way I could. There are several
"Momma Tigers" involved with this Forum on whom you can lean.

Hang in there!! And Bravo to your son for letting you know and to his
doctor for getting that testicle removed ASAP!

Diane

[Karen]

Welcome, and sorry you're here. My dear friend DianeE summed it up. Onc eyou getthe pathology, tumor markers, CT scan and chest X-ray results make sure you get copies of the reports for yourself and post as much infoo as you can. We have a lot of collective knowledge and experiences here and will help you through this. Lean on us.

[Kiwi]

A tough time – we have been there and this is a very challenging period.

Let us know what the results of the CT , Bloods and pathology of the tumor are, this will give a clearer picture of the way forward.

Ask all the questions you need here and with the docs, he is young and will be resilient and bounce through maybe with a few bumps but you will both get there.

At his age did they discuss prosthetic options yet?

Regards

Kiwi

[MargaretB]

Thankyou everyone for the support, results are in on Tuesday,and i will be collecting all paperwork so i can let you know exactally what we are dealing with.They did find markers in his first blood tests that idicated the cancer cells.Sorry i am so ignorant with all the terminology so i will post on tuesday once I get copies of all the reports.It has already been said he is looking at Chemo,so I will have lots of questions once this has begun.
My son is vey brave and pretty much in denial which is understandable,it has been a huge shock.
Also we are in Australia

[Jay68442]

Hi Margaret and welcome. I'm sorry that you had to find us but you have come to the right place to find help and support.

I cannot begin to imagine how you are feeling but I know exactly how your son is. I was 16 when I was diagnosed, that was 22 years ago. I'm 38, the father of 2 and I have lived a wonderful, normal life. I want to point out to you that there is life after cancer. I know right now you are overwhelmed. Everyone is at first, in time it gets easier. Be strong, stay positive and take it one day at a time. If ever your son needs someone to talk to, I'm always here.

LiveStrong,
Jason

[TGlover]

Hi Margaret where in Australia are you?

I am in Sydney and had my orchiectomy done at St Vincents. And now going to RPH in camperdown for oncology.

[mahalomom]

Hi Margaret,

I'm one of those Momma Tigers DianeE was talking about. We're all here for you. You've been given lots of great info thus far. Make sure to buy a folder for you son's scan and test results - just a little way to feel some control over something.

I thought my son was in denial when he was diagnosed at 20 yrs old. He said "Mom, you make all the decisions." He didn't want to read or find out about testicular cancer at all. He just wanted me to tell him what to do. At first I told him he had to get "involved" but quickly realized that was not going to happen. I took the reins as you will. Sometimes our guys just want to be given the orders like a soldier in combat. They don't want the "what ifs" they want the "this is how you kill the darn thing." It may not be denial your son is in...just pure fight mode.

Has anyone mentioned sperm donation?

Please let us know as soon as you get the pathology results. We're all here for you.

Mary Ann

[Davepet]

Originally Posted by MargaretB

Hello
I just don't know what to do, I am very positive around him but in my quiet alone time I can't stop crying, I am so scared for him. How do we cope?

How do you cope? Well, first you need to embrace the fact that your son has one of the most curable cancers that afflict human beings. Never let that thought out of your mind. While there may be a lot of discomfort along the way, the end result is *very* positive. So my advice is to focus on the end goal, which is where you & he will eventually end up. THAT is how you cope with all the BS you need to get through in the mean time.

Dave

[Kiwi]

Originally Posted by MargaretB

....Sorry i am so ignorant with all the terminology .....
Also we are in Australia

Hi Margaret

No need to be sorry - we have all been there - lots to learn.

Can be useful to write questions down as you think of them, take these to the doctors and check the answers off before you leave.

Australia

An aussie web site for you http://www.andrologyaustralia.org/pa...STICULARCANCER

The State Cancer Councils have resources, help, peer support, help-lines (QLD is 13 11 20 – find others on line http://www.cancer.org.au/aboutus/ourmembers.htm) support also for the care givers - YOU -

Canteen is a fantastic your people living with cancer organisation http://www.canteen.org.au/ and the related young people developed Now What site http://www.nowwhat.org.au/info/facts...ticular-cancer is a great resource too

Medical Bills - Australia

Bloods tests make sure the doctors check the “Bulk Bill” box on the request forms

You can also easily locate Radiology clinics that bulk bill xrays and CT scans without any out of pocket expenses (if a referral is written on a specific Company form you can take this to any other radiology provider)

Keep your receipts for your tax records

Any question on the Australian system you can Private Message (PM) me or post here.

PM’s can be accessed with a link under your user ID – towards the top right of the screen.



Cheers

Kiwi

[Cricketer]

Hi Margaret

The odds are very much in favour of your son beating this. I finished chemo nearly two years ago and am going fine. Many guys here have gone down the chemo path. It isn't a lot of fun bit it isn't as bad as you think. I still played golf and went out during my treatment. I've also had another daughter (nearly 9 months old) since I finished so life does get back to normal. This won't be an easy path. Some days are going to be hard in your immediate future but know that many of us have been down this road and come out of it just fine. (OK, were missing a bollock but on the upside jeans fit better.)

Keep us posted on your son's progress.

Cheers

Mike

[Karen]

As you can see, not only are you not alone, but you have manyi n your area ready to help you navigate all this.

The blood markers you need to get results on are AFP, beta-HCG and LDH.

[Pattytricia]

Hi Margaret,

I just want to add my support to you and your son. I am one of the Momma Tigers who knows the feelings you are having. My son was in his 20's, but age doesn't matter when it comes to our child. And things do happen so quickly when first diagnosed - so the feeling is not unusual.
You can walk this new road one step at at time. As DianeE said, your fear will turn into determination. You will become a 'soldier ready for battle' as I called it.
You can come here to get the help you need to put on your armour and help lift you up when you need it. It may feel overwhelmiing, but you have come to the right place. You have a new 'family' that knows how you feel and how to help you through it.
Please take care.

[TGlover]

I am 31 and had my mother try to cancel her chemo/radiation (she is finished up for breast cancer) to come down and take charge.

I managed to keep her in her therapy and to be honest, I think she worries about me it a lot more than I do.

stay strong

[Another Mom]

Margaret,
As others have said, I am so sorry that you need to join this site but it will be enormously helpful to you. You will cope because this is your son and you will do whatever you have to in order to see that he gets through this. My son had a primary tumor in his abdomen so when he went into surgery, we had no idea what we were dealing with. I'll never forget hearing the words "malignant" when the MD's came out of surgery. He was 27 with a 5 month old son. I completely fell apart for the hour that I had before Steve would come out of recovery. Once he was out, I had to pull myself together and put on the strong, positive face that my son needed to see. Steve is currently doing well and is checked every 4 months at this point. Your son is young and strong and he will get through this with your help. This site was so helpful to me as Steve has gone through this ordeal. I could say whatever was on my mind and there was always someone (many someones) that knew exactly how I felt. The people on here are so very supportive and you will find comfort when you talk to them.. Please keep us posted on how you are all dong. Everyone here truly cares.

Cheryl

[base615]

Hi Margaret, sorry you and your son are going through this, it's a crap disease and hard on everyone involved but you will get through it and this cancer is fortunately one of the most sensitive to treatment so the odds are definately for your son.

Where in Oz are you?

[MargaretB]

Thank you to everyone for your thoughts and positive words,I have gained alot of strength through them.
We have an appointment this afternoon to discuss CT results and treatment options,the waiting has been unbearable.I recieved a call from Oncology Dept at Royal Womens Hospital in Melbourne yesterday about Sperm banking prior to Chemo so that has been arranged if need be. My son is expressing concerns about chemo,to the point at one stage he said he would refuse treatment,it has all sunk in over the last few days what's actually happening.
I will post update this evening with results.
Once again thankyou!

[dadmo]

I'm sure the thought of chemo has your son as scared as it's possible to be but he'll step up and get treated. He'll find out that he's tougher than he ever thought.

[mahalomom]

Hello Margaret,

Your son is always welcome here, to ask his own questions. It's reasonable that he is scared.

We're here for both of you.

Mary Ann

[AZRider]

I just completed chemo and I fully get what your son is thinking right now. but standing on the other side I can say every one is right he will find strength he never knew he had. I will also say, be prepared for some heavy conversations in the coming weeks. I'm 24 yrs old and still found myself having deep many conversations with my mother on many topics. I would encourage him to read up on some of the story's on here. they helped me out allot over the past few months. other things that helped was reading about Lance Armstrong's fight. as well as Tom Green's experiences. I pray the best for both of you and your family in the coming weeks. Its not easy but it can be done and remember age is on his side.

[MargaretB]

Hello
CT scan results have confirmed infected,liver,stomach,pancreas and stomach,very small tumours. Another appt friday with oncologist to talk chemo treatment.
The fight is on and we are going to fight this with everything we have.
Thankyou to everyone for there support here

[Les' Mom]

I am sorry about this news. Did you get any blood test results back?


Love,
Pam

[Scott]

That seems to be a very unexpected pattern of spread. Do you have the pathology report from your son's orchiectomy?

[MargaretB]

Sorry that should have read infected lung,stomach,pancreas and kidney , very small tumours.Liver not infected. My head is all over the place atm... Asked for all paperwork and they are sending them in the post.Once I have them I will post on here

[TGlover]

Hi Margaret,

I can't really add much to what the experienced here say (I'm a newbie to it myself about to start post I/O treatment). All I can say is what keeps me positive is that TC has the highest cure rates so although it is devastating to hear the cancer should respond very, very well to treatment.

[Fed]

Originally Posted by Scott

That seems to be a very unexpected pattern of spread. Do you have the pathology report from your son's orchiectomy?

I concur with Scott. These metastases are in locations that suggest this may not be a germ cell tumor. The pathology report is crucial in determining the nature of the malignancy. If any blood marker levels have been determined, they could assist in figuring out what this is, but the pathology report is key.

[Karen]

I also agree with Scott and Fed that this does not sound like a primary germ cell tumor. I can't help but wonder if a biopsy on the kidney tumor is warranted. It would be rare, but the possibility does exist that there are two primary cancers.

[mahalomom]

Hello Margaret,

May I suggest a secondary pathology read? Also, please look at my signature. My son was in a pretty bad spot and he is now doing wonderfully. Keep the hope and fight!!!

Mary Ann

[Kiwi]

HI Margaret

Remember there are people and support groups for both you and your son. The Oncology process include "social support" type people that you will get introduced to.

Remember to write your questions down for the Oncologist.

Have the confirmed the type and made up of the tumor? Do you have the details yet? The sites are not really normal for TC but all cases are different.

Let us know how Friday goes. Are you in the Private or Public system?

Intro to sperm banking here http://www.andrologyaustralia.org/pa...e=SPERMSTORAGE

Give him a chance to talk to the docs on his own to he may or may not want to do something like this.

Thinking of you and your boy.

Kiwi

[Another Mom]

I would get all results to Dr. Einhorn asap and get his opinoin. He is wonderful about reviewing information via e-mail of fax. Sounds like you need his expert opinoni on how to handle this. Prayers continue to come your way.

Cheryl

[dadmo]

Margaret:
I have to agree with Scott and Fed. The spread of his cancer suggests something other than Germ Cell. I would push hard for a second read on the pathology.

[Already Bald]

Originally Posted by MargaretB

The fight is on and we are going to fight this with everything we have.

That is the Spirit!
Chemo is not as brutal as your son may believe it is. Medicine today has developed many drugs to help cope with side effects. Hydration is key.

Just an FYI: Prior to starting chemo, my oncologist ordered a biopsy of a lung tumor in order to confirm mixed germ cell.
Have you considered a second opinion on the original pathology?
Best,
Joe