Finally saw an oncologist

**cbvance** · 05-01-12, 06:20 PM

I am moving into my 6th week since diagnosis and finally saw my first oncologist today.

I recall the day I found out I had cancer I called the "great and marvelous" MD Anderson hoping someone could show some compassion and help me find a cure. At that moment in my life I knew NOTHING about cancer testicular or otherwise except that if you get CANCER!!!

you will probably die Needless to say I was a bit panicked and what I heard from the other end of the line when I reached out to this premiere cancer center was not comforting. The gal said "we are very busy and have hundreds of new patients coming in from all over the world, It will be likely be several weeks before any one can see you". This was not what I wanted to hear of course and after faxing them all sorts of forms for release I still have heard nothing back from them. I suppose If I relied on them for help I would still have a very hard and swollen right testicle potentially spewing cancer into the rest of my body.

The ultrasound was on a Friday, I returned to the urologist on the following Monday, he drew markers and scheduled me for the IO the following Thursday, but did no pre-surgery CT scan.

My first CT scan was April 5th and then the urologist told me it was Clear a few days later, when I saw the actual report however there was mention of a "single mildly prominent external illiac node of 1.2 cm". He simply dismissed the node because it is not regional and directed me to the radiation oncologist for a zap or two.

I chose to seek counsel for another oncologist (one that did not have the word radiation in front of his title) for today.

Of course the oncologist is taking the node very seriously and has scheduled me for a PET tomorrow morning, if that is inconclusive he will biopsy it. If its seminoma my staging advances to IIA and my treatment plan changes a bit.

He wanted to know why I wasn't given a pre-surgery CT Scan as the node may simply be reactive from the operation but who knows, and now it must be considered cancerous until proven otherwise.

The oncologist also took blood markers again and also ordered LDH since that should have been drawn initially as well.

Hopefully the PET is conclusive.

**Jules** · 05-01-12, 07:11 PM

Well as your seminoma is both Chemo and Radio treatable and sensitive to both you have options available, I know exactly what you are thinking, radio is less effective (but it still cured many) but chemo is very effective but can damage the rest of your body.

It's your decision my freind, ultimately the end game will be the same,why not have a staright talk with your radiologist, if they think the node is isolated and it can be zapped, it still leaves chemo as an option.

I would not loose too much sleep over it, many say the treatment for TC is nearly as bad as the disease, it's not as if you have the most aggresive type, consider the x1 carbo if you want peace of mind, I vey much doubt that this is going to cause you more problems than it will frighten you, (and it frightens us all).

What ever you decide we will all back you and love you the same.

**Geoff** · 05-02-12, 09:50 AM

I know it's frustrating to wait so long for an appointment, but getting that second opinion seems like it was beneficial. Hope everything is more smooth from here on out.

**Rush67** · 05-02-12, 05:40 PM

The chemo is rough, but considering your tumor isn't very large, it should wipe it out quick.

**CW406** · 05-03-12, 08:25 AM

Sixth week since dx? The experts can correct me as to the exact timeline (I believe this time is around when the line starts to blur), but I believe you're pretty close to being on de facto surveillance where any adjuvant therapy would be discouraged.

**Nut of Mordor** · 05-03-12, 09:16 AM

Originally Posted by CW406

Sixth week since dx? The experts can correct me as to the exact timeline (I believe this time is around when the line starts to blur), but I believe you're pretty close to being on de facto surveillance where any adjuvant therapy would be discouraged.

Indeed, I think any adjuvant therapy must be done between 6 and 8 weeks post I/0.

**JPM** · 05-03-12, 11:10 AM

My oncologist also said that adjuvant therapy should be done within 8 weeks after the I/O, and preferably within 6 weeks. Otherwise, you've basically chosen surveillance.

JPM

**cbvance** · 05-03-12, 11:31 AM

Originally Posted by JPM

My oncologist also said that adjuvant therapy should be done within 8 weeks after the I/O, and preferably within 6 weeks. Otherwise, you've basically chosen surveillance.

JPM

Actually next Thursday begins my 7th week since the IO, so if I have adj radiation it will start next week.

I have chosen Surveillance if it is offered to me, so as long as my staging does not change based on the PET scan/Biopsy then I am on track.

If however the node comes back as cancerous I am advanced to Stage II and surveillance is no longer an option in which case radiation will start next week.

I am choosing radiation over chemo for Stage II therapy (if it is needed) since Seminoma is sensitive to it and radiation is less invasive than chemo.

I am also told that the latest radiation technology is much more focused with less scatter greatly reducing the chance of secondary non-germ cell cancer later in life.

If the PET is inconclusive today then a biopsy of the node will be done to determine if it is seminoma or something else.

**davidhanson90** · 05-03-12, 12:40 PM

I watched a documentary on the BBC recently about the work The Marsden and other cancer centre's are doing with RT.

They went into detail on the Cyber Knife machine which is acutely accurate a delivering a punch to cancerous cells. It makes you wonder if RT and the evidence for secondary cancers is still valid when using cyber knife.

The whole documentary was great.

http://www.youtube.com/watch?v=u77J4eo9KiA

**frank1980** · 05-03-12, 04:08 PM

Hi Charles, sorry for the delay in answering but I'm here and I have also read your private message. My opinion is that the oncologist did a good thing in scheduling you for a Pet scan and I know that the waiting times are very hard to bear. But it's positive that you were scheduled for the day after (correct me if I'm wrong, if you have written this message yesterday, it means that you have already done it) so you have to wait less time to have the results. I hope by heart that the external node is not dangerous and the Pet will come back with no bad news, and that there will no need to proceed with a biopsy. Anyway, also in my case, when I had my first blood tests, the LDH was not measured and I don't know why... However, as the other friends have yet said before to you, the seminoma could be easily treated with radiotherapy or chemotherapy, so it's a problem that can be solved. I hope for you that everything will be all right! I really wish it to you!

Keep me informed also in private ok? Also if you need to talk a little bit!
Frank

PS: in my case, the Ct scan was done only before the surgery and not after...

**Jules** · 05-03-12, 04:36 PM

Yes, thanks for posting this, you start to feel for them all, particularly Rosemary.

**cbvance** · 05-03-12, 05:27 PM

Well, the past 6 weeks have been a whirlwind. This forum has been a source of comfort and much needed information although I fear the oncologist and staff now consider me a "know it all "

Today the results from the PET scan indicated zero uptake for cancer in my body, the suspect node turned out to be a reaction from surgery most likely and the latest blood draw including LDH were all normal.

So now I sigh a BIG sigh of relief and then ask the Oncologist the hard question someone on this forum said I should ask.

"Dr. If this were your son, brother, loved one etc., what would you advise?"

Without hesitation he responded "1 x Carboplatin".

And so it is. I go in at 9:00 am in the morning for my infusion of 7 AUC Carboplatin.

Also my insurance has approved Emend and I will get a Neulesta (sic?) shot on Saturday.

Thanks everyone for all of the support and advice. I will keep you posted, I plan on doing my own Carbo diary to add to the library here.

**Jules** · 05-03-12, 05:56 PM

Originally Posted by cbvance

Well, the past 6 weeks have been a whirlwind. This forum has been a source of comfort and much needed information although I fear the oncologist and staff now consider me a "know it all "

Today the results from the PET scan indicated zero uptake for cancer in my body, the suspect node turned out to be a reaction from surgery most likely and the latest blood draw including LDH were all normal.

So now I sigh a BIG sigh of relief and then ask the Oncologist the hard question someone on this forum said I should ask.

"Dr. If this were your son, brother, loved one etc., what would you advise?"

Without hesitation he responded "1 x Carboplatin".

And so it is. I go in at 9:00 am in the morning for my infusion of 7 AUC Carboplatin.

Also my insurance has approved Emend and I will get a Neulesta (sic?) shot on Saturday.

Thanks everyone for all of the support and advice. I will keep you posted, I plan on doing my own Carbo diary to add to the library here.

We will catch you and sell you for the Platinum content afterwards...Good luck, I'm sure you made the right choice, keep us posted.

**frank1980** · 05-03-12, 06:57 PM

Hey Charles! I'm very glad for you really! Take a look at your private message and congratulations by heart!

**Rush67** · 05-03-12, 09:04 PM

Originally Posted by cbvance

Well, the past 6 weeks have been a whirlwind. This forum has been a source of comfort and much needed information although I fear the oncologist and staff now consider me a "know it all "

Today the results from the PET scan indicated zero uptake for cancer in my body, the suspect node turned out to be a reaction from surgery most likely and the latest blood draw including LDH were all normal.

So now I sigh a BIG sigh of relief and then ask the Oncologist the hard question someone on this forum said I should ask.

"Dr. If this were your son, brother, loved one etc., what would you advise?"

Without hesitation he responded "1 x Carboplatin".

And so it is. I go in at 9:00 am in the morning for my infusion of 7 AUC Carboplatin.

Also my insurance has approved Emend and I will get a Neulesta (sic?) shot on Saturday.

Thanks everyone for all of the support and advice. I will keep you posted, I plan on doing my own Carbo diary to add to the library here.

That's great! I'm very happy for you.

**cbvance** · 05-04-12, 09:09 PM

Thanks to all that have commented to my status, the infusion went as well as can be expected and now I must hunker down and walk through the remainder of this treatment. I am very well armed with knowledge based of the experiences each of you bring to this conversation, again than you all. I have started a diary in the treatments forum to document my experience over the coming days.

http://www.tc-cancer.com/forum/showthread.php?t=17557

**AustinsMom** · 05-04-12, 11:25 PM

Good Luck with your treatment ! It sounds like you have everything in order. I just wanted to mention that some people find they tolerate any possible unpleasant side effects from the Neulasta much better if they take a Claritan D and Aleve prior to the injection. Double check with your Doctor or Nurse to be safe, but it seems like pretty common practice and our Oncologist had no issues with it.

You'll be through with this before you know it!!

Diane