Concerned mom

[Wesmom]

I'm concerned because I feel the Urologist is moving too slow with my son. My son is 20 yrs old (21 on July 30). My son had an I/O for his right testicle on June 28th. As of today, we still do not know if he is going to have a laproscopic RPLND or going straight to chemo. The urologist is waiting for his blood work to come back to see if his AFP drops to normal. My son's pathology report came back and said it was nonseminoma (mixed cells). My son waited 2 months before he even told me he had a problem. His tumor was 7 cm. I finally requested the Urologist to at least schedule an appointment with an oncologist while we wait. My son's appointment is Aug 3. Do you think this is too long?

AFP before I/O was 530. 150 on July 7 and 94 on July 16. CT scan was good.

[RyanSeattle]

Hi WesMom,
Are you sure it was 7cm or 7mm? You should post more information about the pathology report. For instance did he have vascular invasion? What type of nonseminoma the % breakdown. To answer your question the standard time frame for treatment would be within 6 weeks of his orcheictomy. Their is some debate on whether a L-RPLND is as good as a open RPLND. Where are you being seen? You can always get a second opinion and should ideally have a oncologist familiar with TC. Maybe if you post where you live soneone the board could recommend a oncologist. Good luck!

[Wesmom]

We don't know exactly what the report said. The Urologist said it was embryonal cells. I'm not sure if that is the same as mixed cells. We live in Fredericksburg, VA. We are supposed to see Dr. Sudeep Menachery (Oncologist) on August 3, which will be exactly 5 weeks from the date of my son's orchiectomy. He said because my son's tumor was so big, it was most likely some cancer cells got into the lymph nodes even though the CT is good (no enlarged nodes showing), but if my son's AFP doesn't go down to 0 or normal, he needs to go directly to chemo. I have read a few stories where people have been treated with chemo and an RPLND later. My son's grandfather feels the Urologist is a good Doctor and he trusts him, so i don't know what to think. This whole thing is eating me up inside. I don't want my son to end up with complications, because the process was so slow.

[jram303]

Hi there, i just wanted to tell you a little bit about my story. I had a tumor that had grown for about 9 months, when I finally went in and had my I/o, it was 9 cm!!!!! My initial tumor markers pre surgery were 6000-afp 350-hcg. After the operation my markers dropped to 1260, and 30.My ct at the time was all clear of any spread, so we were waiting to see if my numbers would normalize, unfortunately they didnt.In fact they started going back up to 3000, and 900. It was then that i had started chemo. While my afp was quite high, putting me in the intermediate risk category, the cancer had not made it past my lymph nodes with all being fairly small, and one palpable one in my neck.So as you can guess i started chemo.Well, i am 7 months post chemo and just had another all clear a week ago.I know that this diseae is so scary, but you guys will do just fine.I know the size of the initial tumor can be VERY intimidating, but from what i have seen on here, and from talking to people, its not the size, its how speedy the spread is. There are some guys on here who had very small testicular tumors, but had quite a large amount of spread at the time of diagnosis even, and they too, are doing just fine It is terrible that you have to be on here, but this forum has so many amazing people on it, that have, and continue to provide so much support, and knowledge to each other.It is truly like a family here, and you can lean on all of us for anything you may need, especially with any questions.I have spent the last 11 months learning all i can about this disease, so much that my oncologist gives some of her residents a hard time for me knowing things they dont lol. Be strong and try to take things one day at a time.

god bless,

joe

[RyanSeattle]

Originally Posted by Wesmom

We don't know exactly what the report said. The Urologist said it was embryonal cells. I'm not sure if that is the same as mixed cells. We live in Fredericksburg, VA. We are supposed to see Dr. Sudeep Menachery (Oncologist) on August 3, which will be exactly 5 weeks from the date of my son's orchiectomy. He said because my son's tumor was so big, it was most likely some cancer cells got into the lymph nodes even though the CT is good (no enlarged nodes showing), but if my son's AFP doesn't go down to 0 or normal, he needs to go directly to chemo. I have read a few stories where people have been treated with chemo and an RPLND later. My son's grandfather feels the Urologist is a good Doctor and he trusts him, so i don't know what to think. This whole thing is eating me up inside. I don't want my son to end up with complications, because the process was so slow.

If you do choose to have a RPLND its best to have it done by someone who performs a lot of these and not just your average urologist. I wouldn't let this eat away at you. This is out of your hands and he may not even need a RPLND. You need to ask for a copy of his pathology report and a copy of the ct scan. Keep his info in a file in case you need to refer back to it. 7cm is large but it does not mean that its spread. Vascular Invasion is more important.

[RyanSeattle]

I just wanted to add that if you can afford to take time off and travel the best place is Indiana University. Dr. Foster is considered one of the best at performing the RPLND. This would be the best place to get a second opinion. Who know the RPLND may not be the best choice.

[DianeE]

Hi Wesmom,

There are many Moms on this Forum, so don't hesitate to come here to vent
or ask for advice. We know what you're going through and honestly,
doesn't it just suck?!!

When my son was diagnosed,I can't remember the timetable
betweeen the I/O and the first oncologist
visit, but I don't think it was more than a couple of weeks. I know we
had a copy of the pathology a week after the I/O and I think the oncologist
appointment was the following week. My son and daughter in law
wanted me and my husband to be involved in everything so we knew what
was going on each step. Your son should have a copy of his pathology by
now. Can you post here?

I don't think it's unusual for a six week period between I/O and next level
of treatment, but I have a problem with a urologist who has to be coaxed
into suggesting an appointment with an oncologist, when cancer is
known to be present. Frankly, I don't think it's the urologist's call about the next
step in the treatment. I'm glad your son has an appointment with an
oncologist. If you can, make sure it's an oncologist who has TC experience.

When the shock wears off, you'll put on the boxing gloves just like
the rest of the Moms here. Hang in there!!

Diane

[Aegean]

I am going to agree with Diane and say that unless the urologist is one of great experience in TC, it is not his call.

As Ryan said, the markers are key in determining next round of treatment. Also, the staging is important as well. Either way, being close to 5-6 weeks past I/O, if the markers are not back to normal yet, more than likely further treatment is needed.

I do not know how close you are to Boston or if your insurance extend there, but Dana Farber is an excellent place as well. The chemo, if needed, can be done at home, but I would want an oncologist and urologist experienced in TC.

[Scott]

You're really right on track, now that you have an oncologist appointment scheduled. Your urologist is absolutely right that you must see AFP return to normal, or you'll know chemotherapy is needed. It should be dropping by half roughly every 5-7 days. When is your son's next blood test?

[mahalomom]

Hello Wesmom,

Sorry to welcome you, but you have found a wonderful place. We've been in your shoes, my son was also diagnosed at 20 yrs. old. I can happily tell you that he is healthy today.
You can not jump to what sort of treatment he needs without the pathology report. Request a copy of all blood work, pathology reports and scans along with scan reports. Create a folder where you keep all results, take notes, etc. This is extremely important in case you ever want a second opinion and for you to refer to if need be in the future. If you are going to make medical decisions for your son, be sure he sighns a release for you to get any and all infor and make decisions for him. Once you receive the pathology report post the results here so others can give you advice on a general direction of treatment options.(report which you should already have been given by now- it should only take a week - make a stink if you have to and get that tomorrow!) Remember, we are not docs but many here know more than most docs or even oncologists. TC is only 1% of all cancer so many oncologists have never seen a case. There is a set of standard protocal which should be followed.

If you want to take your son to a Center of Excellence for testicular cancer, there in Indiana University (Dr. Einhorn), Sloan Kettering and MD Anderson, the two latter are closer to you.

We are here for you... to help, advise from our own personal stories and to listen. I know this is all foreign..we will walk you through it. You will get through this.

Mary Ann

[Wesmom]

Originally Posted by Scott

You're really right on track, now that you have an oncologist appointment scheduled. Your urologist is absolutely right that you must see AFP return to normal, or you'll know chemotherapy is needed. It should be dropping by half roughly every 5-7 days. When is your son's next blood test?

My son had his blood work done on July 23rd. We are supposed to hear from the Urologist tomorrow.

[Wesmom]

Originally Posted by Wesmom

I'm concerned because I feel the Urologist is moving too slow with my son. My son is 20 yrs old (21 on July 30). My son had an I/O for his right testicle on June 28th. As of today, we still do not know if he is going to have a laproscopic RPLND or going straight to chemo. The urologist is waiting for his blood work to come back to see if his AFP drops to normal. My son's pathology report came back and said it was nonseminoma (mixed cells). My son waited 2 months before he even told me he had a problem. His tumor was 7 cm. I finally requested the Urologist to at least schedule an appointment with an oncologist while we wait. My son's appointment is Aug 3. Do you think this is too long?

AFP before I/O was 530. 150 on July 7 and 94 on July 16. CT scan was good.

jULY 26 - I just talked to the Urologist and my son has to have chemo. His AFP went from 94 to 97 in a week. We meet with oncologist on Aug 3. This waiting is stressing me out!!

[buster]

Im am late catching this thread, and sorry to hear the news. You will most likely be looking at 3 round of BEP or 4 of just EP. Keep us updated. The good news is you have caught this extremly early and your son will be cured. Good luck.

[Scott]

I imagine you already asked whether the oncologist can see your son sooner, now that the treatment path is certain? At least the current appointment is just a week from tomorrow. Hang in there over the next several weeks. This too shall pass, and things will get better.

[Wesmom]

We met with the Oncologist Aug 3. Yesterday my son met with the surgeon who will place a port in his chest today for Chemo. My son also met with a pulmonary doctor yesterday for a pulmonary test on his lungs. My son will have a Cat scan done on his chest tomorrow. Doctor will talk to us Monday before my son starts his Chemo treatement. Also, sperm banking Friday morning. I am so stressed out! I can only image what my son is feeling. He still doesn't talk about it hardly. He makes comments on Facebook but that's it. The Oncologist also did more blood work on Aug 3. Oncologist also said he calls or emails Dr. Einhorn if necessary.

[dadmo]

Wesmom:
Just hang in there. As scary as the chemo may seem it's the correct path to a cure. By the time Christmas comes around his hair will be comming back and Wes will be feeling like his pre-chemo self.

[Fed]

I am late arriving to this thread, but let me reassure you that this is the correct course of action. Without having the markers normalized, your son is stage I-S (pending the results of the CT scans) which warrants chemotherapy for good risk disease (either 3xBEP or 4xEP). Many in this forum have undergone that treatment, so you will find plenty of good advice around here.

I can understand how your son is feeling. Having this disease at such a young age can be quite a burden. It may take him some time to get used to things, but as dadmo said, odds are excellent he will make a full recovery with the proper treatment. Know that we are here for you and your son, and if any questions arise, don't hesitate in posting.

[Wesmom]

Well here we go again. LOL. Oncologist called this morning. My son's AFP tumor marker went down to 90. Blood work went to different lab so they aren't sure of the variance. I'm not sure if I said that correctly. Anyway, he consulted with Dr. Einhorn about the blood work. Dr. E recommended holding off on Chemo and doing another blood work. Chemo has been delayed until August 16th. Oncologist will call us next week after the blood work is done. He will have seen the pulmonary test and cat scan on the chest by that time too. In the meantime, my son has a port in his chest and ready for chemo. He is stage 1s unless something shows up on the cat scan.