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Recently diagnosed with TC

az09
Posts: 5
Joined: Nov 2014

Hi,

Im new onboard. Was recently diagnosed with TC seminoma(classical seminoma). Im in process of staging. Have CT scan coming up next week. I am kinda scared and was researching and planning ahead to see what the treatments look like. I have came across that if God forbid it has spread i will have to do radiotherapy or chemo. I researched about both and it almost seems like if i do either treatment, its inevitable that i will get a second deadly cancer down the road after 10 or 20 years. Im scared and cant decide what to do.

 

p.s Im a 24 old year

jen2012
Posts: 1607
Joined: Aug 2012

Sorry to hear about your new diagnosis.  I'm sure you are terrified.  Don't be afraid to ask your doctors tons of questions and push them along on testing so they aren't making you wait.  Good idea to bring someone to appts with you too.

 

My husband was diagnosed with stage 1 TC when he was about 33.  He did do 6 weeks of radiation on the doctor's suggestion.   Fast forward 12 or so years and he is diagnosed with stage 4 rectal cancer.   I do think it was caused by the radiation and some doctors have agreed.  Would he have not done radiation if he knew then??  I'm not sure.  He may have stil done it but had he been aware that it could have caused another cancer, he would have been more vigilant.  It sounds kind of stupid that we didn't realize, but I guess we were busy with young kids and figured the doctors knew what they were doing.  You are smart to know what could happen so regardless of what you need for treatment, I'm sure you will be on top of things in the future.

Oh and if you are interested in kids  - we already had one at his diagnosis.  We decided to try for another in the 3 weeks before he started radiation and miraculously it happened.   About 10 yrs later we had another baby - surprise!  

Good luck to you - this isn't a very active board and I just happened to notice a new post.  Feel free to message me with any questions.

az09
Posts: 5
Joined: Nov 2014

jen im so sorry to hear that. Ill pray for your husband that may God give him strenght and power to fight this bad disease off.

 

After hearing about your husband im more freaked out about cancer treatments.while i know your intention was to keep me alert not to freak me out. Im really scared about all these cancer treatments that are out there. not sure what to do

jen2012
Posts: 1607
Joined: Aug 2012

Thank you for the prayers.  And you are right, it wasn't my intention to make you more nervous.  Do you know what stage you are?  I think talking to two or three different doctors would be a good idea.   I would hate to see you turn down treatment, for what may happen in ten or twenty years.  If you need treatment, the benefits may outweigh the risks.  Reading up on this and asking questions is a great start.  Try not to be afraid of the what ifs.  Do what you need to do to survive this cancer otherwise the ten or twenty year worries may be a moot point.   What doctors have you seen?  Urologist, oncologist, radiology oncologist?  I would get opinions from all.

az09
Posts: 5
Joined: Nov 2014

i have only seen my urologist and oncologist. i have the ct scan appointment on friday. Im praying and hoping that there would be no spread. If God wills.

petroglyph
Posts: 41
Joined: Mar 2014

I am NOT a medical professional, so my opinions are ONLY that.

I don't understand why drs. prescribe a ct scan at this point?? My understanding is that the only difference between a ct scan and a PET scan is the type of dye used. A ct scan will only show a tumor that is 2mm or larger. A 2mm tumor can have a billion cancer cells. I don't understand also why not just have an mri if, whoever isn't willing to radiate you [with a pet scan] at this point why not use a mri which doesn't blast you with radiation? Either one definately produces nice clear pictures.

Before someone jumps on here and blasts me for having the opinion that the less radiation our bodies receive the better off we will be, again this is JMHO. As time seems to be of the essence here before some surgeon gets to have his way with you, why not the PET scan that will "light up" anything in your body that "appears" to be cancerous? 

You do know that you can still produce sperm with one testicle, at least that is what I'm told? Is the C in both? My cancer is head and neck, I have no tumor markers to watch to see if I'm getting better or worse. Mine does seem to be held at bay at this time, I am definately thankful.

If you lose one and the vanity of it bothers you, I believe there is a prosthetic which can be inserted. I guess I am rambling. The choices of treatment are alway ours, some people just are not able to make them, partly do to being overwhelmed and partly do to being rushed into treatment.

Take this for what its worth, and on the www to boot. I know a guy who is a 19 year survivor of throat cancer who was able to corner an oncologist. He was able to get an answer from him as to why victims are placed in radiation so soon after surgery [usually within 6 weeks], the reply was " if we didn't get them in that soon, many would blow off radiation altogether".

I have absolutely no medical education or training, do not take my opinion as medical advice, but something was done for me which at least imo has altered the outcome of my disease. What I was told was my cancer although serious, it is also slow. Not glacial slow, more like old people slow. I had time to form my own plan, which is what  I am still alive and working with, 1 year after diagnosis, and 9 months post surgery, nothing to brag about but a good start.

You apparently have some kind of insurance? There will probably be disagreements. You have to take control of your life. If you are willing to let decisions as important as this be made by others, you will have to be able to accept the results that the decision makers are willing to live with. There can be a vast descrepancy in those two results.

You [we] need to know, before treatment the answer to any questions. This is one I would like you to ask if you have not. Meet with your onc, and ask them what is their typical percentage of satisfactory results after treatment after 5 years as a % of patients that they have personally worked with? You do not have to accept a first or even second opinion. Find and speak with survivors [regardless of their age] of your particular type of cancer and listen to what they have to say.

You have the final say. May God have mercy on us all.

az09
Posts: 5
Joined: Nov 2014

Update # : So CT scan results came and doctors said there is nothing of significant in pelvic and chest. But there is a lymph node near my pancreas near abdominal aorta that slightly on abnormal size. Doctor said the normal size is 1.2 cm for that node but mine is 1.4. She refered me to Seminoma specialist for further diagnosis and my appointment with him is in 11 days. In regards to this node im really scared. Scare if its a spread. what you guys think?

Also would this spread be considered in abdominal or distant spread?

az09
Posts: 5
Joined: Nov 2014

I really need some advise and help. Doctors have suggested two option for the lymph node that came slightly bigger than normal.
A) get a pet scan (costs about 3000-6000$)
B) Get a ct scan in another 3 months

I dont know what to do since the node thats abnormal size is only .2 cm bigger. Please advise me guys. Also im not that rich. affording a pet scan for 3000-6000$ is way out of my pockets

petroglyph
Posts: 41
Joined: Mar 2014

Are you still here? I didn't notice this post for some reason, I often check in at the  head and neck group as that is what I had.

I don't know the particulars of testicular cancer so maybe I can learn from you? If that lymph is like others they get bigger and smaller regularly.

It amazes me how much of treating our disease rests on our shoulders. Almost like entering the twilight zone. Have you told your hospital your economic status?

Somewhere near where you live there is a cancer survivor network that is a fountain of info. It is a whole new field of study that most all of us wish we had never had reason to enter into.

Learn how to breathe to help you relieve stress. In through the nose and hold for 5 count and out through the mouth. It may sound goofy but it helps. Several times per day. Relax as best 

you can, this is a marathon not a sprint. This is beatable, I have known guys to beat this. You got youth on your side and that does help.

Frankie5A
Posts: 1
Joined: Aug 2007

I was diagnosed with Testicular Cancer 9 years ago. It was contained in the testical and did not spread. My physician ( who is one of the best In the country at MSKCC in NY) had me go through radiation therapy as a precaution. he mentioned that there was a very small possibility of getting leukemia 25 years down the road. He was clear in saying that in his career ( and he is in his 30th year)..he HAS NOT SEEN THAT HAPPEN.

I am 9 years cancer free and in the best health of my life. Feel confident that we had the CURIBLE type of TC.....good luck and feel free to comment. I'd like to know how you are doing.

 

Frankie5A

kings2017
Posts: 1
Joined: Jun 2017

Team, Am in Africa (the Jungle-Kenya) I have been having issues with my right testicle it is not swollen, has a cyst the doc calls it Epididymis cyst it has been here for a year now till recently i realized some funny pains. I went to check-up and medical examination today and the ultra sound got the cyst still there but increased in size.

 

My AFP is 20.42IU/ml normal is below 7 IU/ml. B-Hcg is 3.89mlu/ml normal is less than 3mlu/ml. Kindly help am I with cancer. I have been advised to remove the cyst by urologist am worried for my last that this is not the right approach.............................................

 

what is the normals for the above ?

 

Apaugh's picture
Apaugh
Posts: 800
Joined: Aug 2016

You need to get on this.  get a second or even third opinion from an onocologist that specialises in testecular cancer.   Take your lab and all test results to him when you do.  

Hope for better outcomes and answers to put you at ease.

HUGS>

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