Fuming

[mstlyn]

I just wanted to say that I got a call from the oncologists office telling me that my sons scan of the chest was clear and that the doctor would be calling me later.

The doctor called me a few minutes ago to tell me there are a couple small nodules in my sons lungs. According to him, 1 in each lung.

I don't mean to offend anyone but I'm pissed and I am blaming the doctors and all the delays for this.

It has been 3 months now since my sons problem began and I took him to the ER!

Mostly I blame his primary doctor for not giving us a referral when we took the hospital referral to him.

The ultrasound at the hospital showed a "tiny hematoma" that they said they did not think was cancer.
But gave a referral and told us to follow up with a urologist to make sure.

This dumb ass doctor did not give us the referral until the whole testicle was rock solid, which was 3 weeks after the visit to the ER.
Why did he wait?
Why did he not give us the referral instead of playing God with my sons life???????????????
I thought the jerk knew what he was doing and that my son was ok!!

Had he given us the referral and the urologist found the cancer when it was so tiny, the orchiectomy likely would have been my sons cure!

Three months to get blood work and scans so we know what stage its in and what to do.

First they let it go until it affected the lymph and spread to the abdominal nodes.
The first xray of his chest was clear and that was December 11th! Why did they wait until NOW????

The doctor says .. the chemo will take care of it.. and "this doesnt change his prognosis significantly"

But it DOES CHANGE IT AND THERE IS NO EXCUSE FOR THIS!

This is not their damn lives to play these games with.. this is MY SONS LIFE AND ANY CHANGE IN HIS PROGNOSIS MATTERS TO US!

I honestly think these doctors deliberately allow it to spread as part of some sickening study and to give more doctors some experience in treating it!

Im so mad right now I don't know what to do with myself.

This makes me sick to my stomach .. it didnt HAVE TO HAPPEN IF THESE JACKASSES GAVE A DAMN AND IT WOULDNT HAVE HAPPENED IF IT WHERE THEIR OWN CHILD!

[Savin16]

I don't know what else to say except I'm sorry, and I understand your fustration. If we had only got a second opinion after surveillance was an option for my brother after his I/O and if we had only met with our current urologist we would have had the RPLND first before the wasted 4 cycles of BEP. Our (NEW) Dr. now said surveillance never would have been an option in his book, and chemo before RPLND never would have been an option, so now my brother did 4 cycles BEP, RPLND and is now getting Salvage chemo. But if's and would have's won't change anything, you can get mad, sue, whatever, but that's not going to change where your son is right now. If you are not happy with your current Dr.'s switch, I understand with your son't insurance, you need referrels, that does make it difficult, but what we did in the beginning is just let places bill us, then try submitting to your insurance on your own. Get your copies of everything and submit them to Dr. Einhorn, our current Dr. is in touch with him for my brothers case, but rest assure, I will be forwarding things on my own just to be safe. I know none of this helps, and I am sorry, but your son is on the right path now, he will be fine, not a doubt in my mind, with a mom like you double a triple checking things, you both will be ok.

[dadmo]

These post are maddining. How often do we see this complete breakdown in our medical system. This is a type of cancer that they can cure if treated properly and early and still the screw-ups are more common then the smooth treatments, and your right it wouldn't happen to the doctors family. Chemo is a proven cure but it's not like drinking tea for a cold. I'm sorry you have had to be put through this but the chemo starts next week and it will still cure your son. Jezz I'm really Pi****.

[mstlyn]

I would like to know how to go about contacting an "expert" TOMORROW to talk to him/her and see what they think about the treatment the oncologist has planned for my son.

He told me the treatment is the same and that the chemo will get rid of the nodules in the lungs. He also said that this does not change the prognosis significantly. Obviously it does change the prognosis, but I would like some percentages here.

This morning I thought my son had a near 100% chance of being cured. What does he have now?

I was so angry when the doctor was telling me about my sons lungs that I could barely speak. I wanted to scream at someone, but the oncologist was not the one to scream at because we just started seeing him, so he can not be responsible for the delays.

Because I was stunned to hear about the scan, I sat in silence. The doctor said .. Hello???
I had no words at the moment.

Now I am thinking that I didnt find out what stage my sons cancer is.
From what I have read it has to be stageIII but I dont know if its IIIB IIIC or what. And I guess that can makea big difference.

If it is in the lung and he has lymph large lymph nodes I read that the prognosis is not so good???????

He has a node that is something like 4.5 x 3.2 (something like that) and it is an abdominal node.

According to the doctor the nodules in the lung are tiny.

But then again I feel like I was lied to on the phone before the doctor called me.

The nurse or whoever the woman was that called told me ... "its ok"

I thought , what does that mean? and then she said the scan was clear.

Obviously she didnt tell me the truth and it was deliberate. It made me really mad because when she told me it was clear, I felt like I was on top of the world.

I was thinking GREAT! HIS LUNGS ARE CLEAR AND CHEMO IS ABOUT TO BEGIN!

Then the doctors call crushed me.

In any event, I want to hear an expert tell me if the planned treatment of

4x EP is the right way to proceed.

If he tells me that then I am calling my sons oncologist and telling him we dont want to wait until the 29th to begin.

Can anyone give me some guidance on how to go about getting an expert to talk to me?

[mstlyn]

These post are maddining. How often do we see this complete breakdown in our medical system. This is a type of cancer that they can cure if treated properly and early and still the screw-ups are more common then the smooth treatments, and your right it wouldn't happen to the doctors family. Chemo is a proven cure but it's not like drinking tea for a cold. I'm sorry you have had to be put through this but the chemo starts next week and it will still cure your son. Jezz I'm really Pi****.

Thank you dadmo .. It is really maddening. I hope you are right that he will be cured.

[mstlyn]

Appreciation

I just want to respond to everyone that has been replying by saying thank you and I dont know what I would do if I didnt have you.

I really wanted to break something and scream at those doctors. I didn't want my son to see my emotion because I didnt' want to scare him and have him thinking the worst.

So I had to contain myself.

This was the only place to come with it and you guys are always there.

Thank you so much .. (yeah Im crying like a baby)

All of you are a blessing

[Lori]

Contacting an expert

I would suggest Indiana University since you are located in MI and they are one of the best. Dr. Einhorn's office can be reached at 317-274-0920

We had our oncologist reach out to him at the beginning and then when we wanted a second opinion we called directly and set up an appointment for a visit.

The entire staff there is great so even if you don't get in with Dr. Einhorn, they all concur on cases.

[Scott]

I have to agree that the delay is maddening, but your son will be cured. Hold on to that thought!

[dadmo]

mstlyn:
Don't drive yourself crazy with getting the staging exact. The big issues is did it spread and to where. Your son has some spread and the protocol for treatment is clear and the cure is almost certain.
As far as a second opinion goes, get one from an expert. I started the process with our oncologist by asking if he would mind a peer review of what he found. I told him that I trusted him but I was very scared and it would make me feel better. His word to me were "O you mean a second opinion", with that he gave me a referral to Slaon Kettering. I called them the next day and was at Dr. Motzers office about two days after that.

[Margaret]

I really don't have much to add because they have already given you some wonderful advice, but I did want to lean my support to you. Someone in North Carolina is praying for you and your son and sending you warm wishes.

Hang in there!

Margaret

[Chris'Mom]

I hear your frustration, and am sorry for the runaround you have gotten. When my son Chris was first diagnosed, our local Dr. said he had to go on the internet to read about TC...and that was all I needed to hear. Goodbye, and off we went to a larger hospital, where Chris has his orchiectomy. The Dr. there told me to have chemo there, which would have been a three hour drive up and back (six hrs) ....never did he even mention I could have it done at a cancer hospital five minutes from me. When he told me the scans showed it was in Chris' lymph nodes...he said he would do the RPLND surgery.
I asked him how many surgeries regarding this very serious operation he had done, he wouldn't look me in the eye, and he said "I've done enough". With that, I made him give me a second opinion to Sloan Kettering and Dr. Sheinfeld....on the second opinion the original Dr. wrote that Chris would need at least two more surgeries for his case...Dr. Sheinfeld did one three hr. surgery on Chris and he is doing fine. He did not have anything in lungs though. Unfortunately, you must be your own health advocate for something rare. We also dealt with our insurance company and got as much backup on how this must be done at a large hospital who specializes in this. In the end, we did have our insurance cover Sloan Kettering treatment. Please keep us informed and up to date...Mary Ellen

[mstlyn]

Mstlyn.

I would give this Onco chance. You even said you had just started seeing him, he has chemo ready to go Monday. Your in good shape.
, if he told you a 100 % ( most Drs will never say 100% ) you are still in the high 90's. I had the exact same thing. My profile things is not correct in the sense I had only 1 bleo, and ask if I could drop it, so I eneded up doing extra cycles of EP my treatment option wasn't listed.. My cure rate was given in the high 90's. Alot of people who have tc, have this same thing as your son. How many in this site have had the exact same thing. It Is HIGHLY curable !!!

Have you Dr do a telephone consult with Dr e. I think he will tell him the same thing. If he does conscult with DR E , I would still ask him EP vs BEP .


Have your DR the phone consult, and he will recieve a written report by fax in a shortly. This week would be a good week to do that if you are. As he is starting monday

The doctor did not say "100% chance of cure" I gathered that on my own by all the posts in this forum. I have read that the chance for cure is near 100% when it is caught early. The doctor did not give me any numbers or percentages, he just said that if my son responds to the chemo he can cure him.
He said that BEFORE we found nodules in his lungs.

I don't know what the chance for cure is now. I recall reading something about once its in the lungs and there are large lymph nodes, he is in the poor risk catagory.
The abdominal lymph node was 4.3 x 3.5

Robert I am hanging onto your words that it is still highly curable and I pray you are right.

I called the oncologists office a little while ago and talked to "vicki" about wanting Dr.Danish to consult with Dr. Einhorn.

She said that she will give him the message but she cant guarantee that he will do it unless he feels that he needs help.

I won't make any judgements until I hear how Dr. Danish responds to my request.

I told her that I want Dr. Danish to treat my son but that after all of the delays by other doctors it is in his lungs now, and I don't want to take anymore chances; and would just feel better if he consulted with an expert about the best way to treat my son to give him the best chance for a cure.

She said she understands and that her son is my sons age too. She will give Dr. the message.

I am now waiting to see what happens.

What if he tells me that he knows what to do and that the consultation is really not necessary?
Do I take his word for it, or what?

There is no time to waste anymore so I don't want my sons treatment delayed.

[mstlyn]

Well, because of how the cycles run, it is probably going to be Monday. Cycles go 5 days, with the 3 chemo's. It will be ok to start then, but if they said 2 weeks, then I would get on them. I couldn't imagine them not starting then
.From infomation provided, the Dr is on protocol . Please try to keep in mind that this will most likely take care of the problem, with the possibility of a RPLND, depending on markers and how the nodes respond. Keep in mind that this is a proven treatment. Yes, it stinks that DR A didnt move faster , but I think your oncologist is on it. Your son probably had cells in his lungs earlier and the x-ray was clear. Remember, it only takes one cell to start the ball rolling, so it is hard to say ( for instances)" if they did this last week it would be drastically different."

I'd think it would be safe to say that a tc expert is going to also "order" 4xBEP, but it never hurts to have someone looking. You should ask your Dr to consult with a tc expert if you want, and he will set that up. I want to say again, that in all probablilty the are going to say the same thing, 4xBEP.

I think the oncologist was right when he say's this won't change things drastically. Is it better to have it spread to the lungs? no, of course not. Ideally if one has to have it, we'd hope it was caught early enough to not have left the primary site, but this treatment is highly effective , so his outcome is very very good.

I understand you want to do chemo tomorrow, but starting Monday should be good.

Try to stay focused on the postive that this is highly treatable. getting the anger out is good, so that you can stay focused on the treatment ahead. This is a good place to get it out, then begin to go forward.

Did they do blood today, or recently? If so, can you post them?

We are here. Hang in there.

R

Cycles go 5 days with 3 chemos, but how do they go when it is 4 chemos? Originally the Dr. was going to treat him with 3xBEP. I asked if he could treat him without the bleo and he said he can treat him instead with 4x EP.
Do you think that should still be the way to go? Or would the treatment change now that we know about nodules in the lungs?
I wish I knew when I should argue with the doctor if I need to. It is hard to have an argument when I am not the one in the know.

[mstlyn]

I hear your frustration, and am sorry for the runaround you have gotten. When my son Chris was first diagnosed, our local Dr. said he had to go on the internet to read about TC...and that was all I needed to hear. Goodbye, and off we went to a larger hospital, where Chris has his orchiectomy. The Dr. there told me to have chemo there, which would have been a three hour drive up and back (six hrs) ....never did he even mention I could have it done at a cancer hospital five minutes from me. When he told me the scans showed it was in Chris' lymph nodes...he said he would do the RPLND surgery.
I asked him how many surgeries regarding this very serious operation he had done, he wouldn't look me in the eye, and he said "I've done enough". With that, I made him give me a second opinion to Sloan Kettering and Dr. Sheinfeld....on the second opinion the original Dr. wrote that Chris would need at least two more surgeries for his case...Dr. Sheinfeld did one three hr. surgery on Chris and he is doing fine. He did not have anything in lungs though. Unfortunately, you must be your own health advocate for something rare. We also dealt with our insurance company and got as much backup on how this must be done at a large hospital who specializes in this. In the end, we did have our insurance cover Sloan Kettering treatment. Please keep us informed and up to date...Mary Ellen

I am happy that things turned out well for your son;thanks to you. So you were already in the know about Sloan Kettering and Dr. Sheinfeld? Or did you find information out after he was diagnosed?

I wish I could have taken my son somewhere like Sloan, but our finances have us strapped. I have no way to get there, no where to stay and I figured the experts would not even notice us without insurance or money.
The insurance my son has is some type of county insurance he got after he tried to get some medicaid and was turned down.

And they are very picky about going through the referral process.

Every single test the Dr. wants to do has to be approved by them. We keep getting letters about how this and that was authorized, and then it says that the authorization number does not guarantee payment.

We were told this insurance he has is not as good as the medicaid. It does not cover any hospital stay at all, not even for surgery. Out patient surgery is covered though.

I appreciate all the words of encouragment and care.

Thank you,
Tammy

[mstlyn]

I really don't have much to add because they have already given you some wonderful advice, but I did want to lean my support to you. Someone in North Carolina is praying for you and your son and sending you warm wishes.

Hang in there!

Margaret

Margaret, I believe in the power of prayer and I am grateful to everyone that has been praying for my son.
God has his reasons for everything, and I keep trying to tell myself that there is a reason for this and that in the end God will make sure he is ok.
Your prayers and notes that show people care are appreciated as much as the advice I get on here.

I'm hanging in there! Can't deny that Im scared, but hanging in there.