new diagnosis, couple questions

[zoltar]

hey all--

couple questions. diagnosed with a very likely malignant tumour yesterday. 2.5 cm mass showed up on ultrasound and tumour marker indicators (afp) (hCg) both came back 'out of range' (i.e. above normal).

1. so my afp came back at 34.5 ng/mL and then said normal was <6.1. can this 34.5 ng/mL tell me anything about the type of cancer i may have or the severity of it all? i assume no...that you just have to wait until the pathology report.

2. is it normal to have my surgery scheduled more than a week away. i assumed they would act on this more quickly but they seem to think it's fine.

thanks,
jon

[Fed]

Hey Zoltar,

Welcome to the Forum. Elevated HCG and especially AFP alongside a 2.5 cm testicular mass are highly indicative of a non-seminomatous malignancy. You really should push to have the surgery done sooner. Non-seminomas are more aggressive and tend to spread at a faster rate than seminomas. I would really insist on having the surgery done ASAP.

You will find the Forum extremely useful, as there are plenty of experienced people around. Of course, we are no substitute for direct advice from an M.D., but we can certainly help point you in the right direction.

[Scott]

Welcome, zoltar. Knowing that AFP is elevated, it's non-seminoma. You'll want to get through the orchiectomy right away. Depending on your pathology report and CT scan results, options may include surveillance, RPLND, or chemotherapy. Keep us posted.

[dadmo]

I would have to say that there is no doubt that you have cancer so the sooner you get that bad boy out the better.

[petep]

- not that I'm adding anything here - but yes, surgery immediately...

- I rec'd my ultrasound results at 4pm, and had surgery the next day, 7am.

- The best advice you will get on these boards is make certain you consult with an expert in TC...even if you go to a local oncologist post surgery, get a 2nd opinion...

- if they knew to do the ultrasound and get the surgery scheduled, that is a good step...but the subsequent reading of the pathology will be where great expertise is required....I took this so seriously I flew to indy after getting my path report...slides, CT and chest xray in hand...to get a 2nd opinion...they confirmed everything - but it was the best several hundred dollars I ever spent in my life. They even suggested a doc at the University of Miami that einhorn knew...2 hours from home, but worth my drive.

- A good oncologist will always want to see the slides himself, and use his path. team...he will never just trust another persons pathology report.

- you will be fine, but will have to "deal" with this, as you are already doing...the part you are in right now (the mental part), as I look back, was by far the hardest part...you don't know much about what you have, you can barely concentrate which makes research hard, and you have to wait...surgery, then pathology reports, blood tests, CT scan, chest xray...in 2-3 weeks, this part will be behind you, you will have far more knowledge....I remember waking up after surgery and thinking "that's it..wow, that was not bad" My point is do not stress too much about the surgery.

- the last piece of advice, be your own advocate...read the boards, read the articles, consult experts...oddly, this is a rare cancer, but arguably has the best data available, and such standard protocols - as one doc told me, I got the jackpot of cancers, with the cure rate being so high.

- keep us posted.

pete

[mstlyn]

This is what happened to my son ...

November 5th 2006- He complained of pain like someone had kicked him between the legs, and there was swelling.

Went to the E.R. where he was treated for epididmytis. The did an ultrasound and noted a "tiny hematoma" which they said is usually caused by injury. They advised my son to follow up with an urologist to be sure.

Insurance will not allow him to seek out a specialist.. he had to have a referral from his primary doctor.

November 8th 2006 he seen his primary and gave him the diagnosis and other paper work from the E.R.

The doctor said it felt like the swelling was going down and told him to come back one week from that day for another check up.

November 14th or 15th- ( I have probably lost track by a day or two, but I assure you not more than that)

primary doctor said the swelling was almost gone and everything seemed to be returning to normal.
He said to come back once more and get a physical. This was scheduled for 12 days later.

During that time and a few days before his appointment, my sons testicle hardened.

November 28th - The doctor examined my son and sent him out to get an ultrasound, and blood work.

Now Im wondering what is going on so I call the doctors office .. I am guessing it was between 2 and 4 days when I called the office and told them I wanted to know what was going on with my son.

They scheduled an appt. for me to come in and talk to the doctor. When we got there they had the ultrasound results. Said something about not being able to rule out a mass. Follow up with urologist recommended.


December 11th 2006 - The urologist felt my sons testicle and immediately told him it is cancer.
He had another doctor come in for second opinion, which was the same as the first.
They did an in office ultrasound for confirmation, and scheduled my sons orchiectomy for DECEMBER 20TH! 9 DAYS LATER!

I got my sons path report on January 3rd only because when I took him to get h is staples out, I had to ask them about it and they had to call the hospital or wherever to get it.

He was supposed to come back for follow up with the urologist on Jan.15th but when they called for the path report they called us to come back on Jan 5th instead.

Path report- 95% embryonal carcinoma 5% yolk sac tumor - vascular lymph invasion.

CT scan of the pelvic area was set for the following monday, jan 8th.

They found an enlarged abdominal node.
The urologist was out of town for the WEEK .. and I couldnt stand the waiting so we went back to the primary to get a referral to an oncologist.

He set chemo to begin on Jan. 29 to give my son time to bank sperm. I was worried about that, but the oncologist told me that extra week wasnt going to make much difference.

Meanwhile he scheduled my son to have a portacath inserted and get a CT of the chest.

They found 2 nodules in my sons lungs. (I forgot to mention that my son also had a chest x-ray before he met the oncologist, and it was normal.

THANKS TO DOCTORS TAKING THEIR TIME AND PLAYING GOD my sons tiny hematoma turned into stageIII cancer between November 8 2006 and January 2007.

If only I had known what I know now about testicular cancer, I would have had my foot up that doctors ass. He may still get one yet.

I say DO NOT WAIT.

Don't panic, but don't wait around. It spreads too fast.

[Vinny]

I'd push to get the surgery scheduled sooner. I had my diagnosis on 12/27/2004 but waited to have my surgery until 1/5/05 because I didn't want to be limping around while visiting family on vacation. Meanwhile my AFP and b-HCG shot up and I wound up getting 4 rounds of BEP instead of 3.

TC is a very treatable disease, but sometimes you have to spur your caregivers, especially if they're not well-versed in TC. Good luck!

[dadmo]

My son was stage III because he waited. Our doctor checked the testicle at noon and it was out before sundown.

[boyce]

Please don't wait

The orchiectomy is not a complex procedure. 90 minutes in and out.

My mass was doubling in size each week!

Please---get the surgery faster. It is no less than a potential life and death decision.

[zoltar]

well....

well...thank you to everyone for all the advice. it's all very interesting and i must say overwhelming...but nonetheless much appreciated. maybe i should give you all my doctor's number and he can field your calls.

i spoke with my doctor today and he thinks that a week is actually quite quick. i assume if his schedule was lighter, the hospital wasn't booked (as they said) they would do it more quickly. i know that's a horrible thing to hear but at this point i'm not sure there's much i can do but wait until monday (one week from today). i'm still going to try other avenues but i feel my hands are tied. believe me, i'd like to be there first thing tomorrow.

but i'll keep you all posted. sigh....and thanks again.

[Karen]

I guarantee that if the mass was in the doc's testicle or his son's it would be out the same day. Do NOT wait that long to have it removed even if you need to crawl into the ER complaining of excruciating pain. It's your life.

[ivannabanana]

Hi Everyone, Hope the sun is shinin where you are, (im in Scotland and its not :-( )

Having read the start of thys thread and reading all the posts thereafter, i have to agree wyth get to ER if thys doctor is not going to do it in a week... My hubby (who is thankfully on survielance now) had been feelin ill for some tyme and one thyng and an othr doctors and hospitals could nt get to the root of what was wrong... U see my hubby had no swellings no lumps no soreness and nothyng to suggest really that he had TC.... He had gone to doctors on several occassions complaining about pain in hys kidney region and been real tired and breathless.... It was only when wwe go result of a chest X_Ray that the doctor called us in to the surgery... Thys was on the wednesday morning and she wanted to admit George there and then to the hospital but we NAIVELY thought she was over reacting and said that we would be happy wyth just further tests!!!! MISTAKE!!! Wyth tyme to thynk about it by afternoon i decided that if she thought it ws serious enough to admit to hospital then i was all for it... (My father died of lung cancer, and an abnormal X-Ray was hys first indication of thys disease) So i called my husband at work and told hym to come home we were going back to the surgery... BUT thys tyme we couldnt speak to the same doctor as she ws away home for the day so we got to speak to the HEAD of our surgery and altho very sympathetic and concerned for George he wsa NOT prpeared to admit hym to hospital and hys reason being ... He said that putting George in hospital would not speed up any treatment or scans he should get.... Well needless to say i exploded!!!! On one hand i had one Doc desperate to get hym in the hospital and on the other one not really that bothered.... Thys was after i had asked the Question "are we looking at lung cancer here?" hys reply was he didnt know but if it is cancer we should hope it is Hodkins because thats more cureable!!!! I wanted to slap hym so hard... We left hys office that afternoon me in tears and George absolutely in shock.... BUT about 2 hours later we got a phonecall from that same Doctor asking George to get prepared he was admitting hym to our local hospital.....There the journey began..... after 2 hospitals, several X-Rays, scans and a million different Doctors and i lost count the number of diferent wards and beds he was in... we finally were told he had TC and it was a Teratoma(thys took 10 days to be diagnosed).... he was transferred the next day to Beatson Oncolgy Centre In Glasgow and also we were told it was not a Teratoma but a Seminoma.Also when he got to the Oncology Centre they decided they wanted to gyve hym more tyme beofre starting the Chemo because he had BiLateral Stents inserted to help Kidney function and hys kidneys were improving daily, so they thought it would be better to have hys kidneys functioning best they could .... BUT please note my hubby neva had to have an operation to remove a testicle because he has what they call EXTRA GONADAL GERMCELL TUMOUR... He had a tumour sitting behiond the kidney which we were told ws size of small melon and he had lesion in mediastnum.... he started hys chemo of 4 XBEP on 29 AUg 06 and finished on 17Nov 06 and hys markers came down to normal within 2 weeks and just week before Christmas we were told that is had reduced to about 6cm and that it was dead tissue.. since then it has reduced by a furhter 25% and he is getting back to normal... he gets blood checked every month and a CT scan evry 3rd month.... I am greatful to that man above he must have been sick listening to me, i prayed i shouted and cried at hym, but only because i knew he was listening... AT our last clinic George was told that if he had left it any longer he probably would not have been here... Hys tumour was leaning against main artery leading to the legs and of course it was squashing other organs whyle is doubled in size... So i guess what im trying to say here is DONT leave thyngs... follow your instinct even if you feel lyke your being bolshy and pushy.... ITs a life and as somone already said if it was the Doctors son, do you thynk he would take a chance...I thynk not!!!MY hubby doing great and i am so happy i neva thought i could be thys happy again but you gotta have Faith... I read thys forum every day because i wanna know how everyone is doing, i dont forget how i felt in the early days and if my hubbys story can help others then im so pleased.... Take care all, and stay smiling, cause its infectious :-) bless Yvonne

I hope i have put thys post in the correct thread , i get bit mixed up sometymes...

[zoltar]

surgery

thanks for everyone's advice..i'm heading into surgery tomorrow (monday) and will let you all know how things go.

[Scott]

Get the package of frozen peas ready!

You'll come through great tomorrow.

[dadmo]

The operation will be no big deal just make sure you hav sweat pants or some other britches that don't require a belt. (yes I said britches, I'm listening to country western music)