Just met my medical oncologist. He's Hopkins trained and resume very impressive. But I just don't know what to think.
I called Johns Hopkins about a 2nd opinion, but it will take 3 weeks, and I don't want to delay treatment.

I have a very large tumor at the base of my tongue (Pet Scan 4x3x4cm approx)and also showed 3 very small nodes (8mm)with possible hypermetabolic activity. There is also a possibility of a false/positve read. Cannot feel them manually. No other cancer throughout my body.

Dr. said that he's working for a "cure". Wants to do a reduced dose of Cisplatin weekly as opposed to the 3-4 interval doses. Seems to be his stardard regimen. Also he couldn't give me a definite staging. Said it could be 111,Iva or Ivb depending on the lymph nodes, and that radiation will take care of them.

Unfortunately, I can't get an appointment with Johns Hopkins until the end of February, and I don't want to wait to start radiation as it's radiation, more so than chemo, that kills the cancer.

They want to start me next week. I'm not sure what to do or where to go.

Thanks
Sandy

Sandy,

I had a few people putz around my cancer so long and by the time it was diagnosed it was exploding in size. I was really upset with myself because valuable time was wasted when I could have been getting 2nd, 3rd and 4th opinions; unfortunately, it did not work that way. I felt very good about my ENT and RO--they moved lighting fast and hopefully saved my life in the process. My RO also comes from JH and has worked in conjunction with Sloan on H&N/OC txs. When everything was caught up to speed I had an ENT, RO, MO and a OS all recommend that the tumor be removed. So, I had surgery, healed then zapped for 7 weeks, no chemo. I was told if my nodes came back suspicious or positive chemo would have been added.

I wish I could help a little more then just telling you about my situation...I do know that several on this site were tx'd with radiation/chemo and no surgery.

Sandy, so sorry to read about your situation. I feel 3 weeks is too long to wait for second opinion. It's also critical you feel very positive and comfortable with your medical team and that feeling is obviously missing here. Like Ray, I had surgery first to remove infected tonsil and lymph nodes and then went into radiation. Didn't have chemo as PET scan was all clear following surgery but they couldn't be sure about the "margins" so had to have radiation.

Sure others here will offer their guidance. Keep us posted.

Sandy

Do you like the doctor? Did he listen? Do you like the plan?
I know the party line is that second opinions are due diligence but I know what you are going through. A second opinion is not an easy solution either especially if it is different from the TX plan you have in terms of surgery, etc. So which one do you pick? And if, God forbid, you have a recurrence (statistically very likely with BOT in an advanced stage), will you then regret the choice you made?
Funny, I was going to ask you how you were getting a second opinion so quickly when 18 months ago I was told a month or more at least for a John Hopkin's second opinion. So I bit the bullet and just went with the TX plan from Georgetown. It wouldn't hurt to ask about Erbitux as the chemo with your doctor as I was scared of the Cisplatin side effects.
I do agree that the Radiation is important to start and for what it's worth, the rad and chemo did wipe out my original BOT tumor - this one's brand new plus I had a glorious one year period of living cancer free. Now I know too late that you need to work the second opinion process the same time as the first opinion or for unconnected folk like us the tyranny of the full appointment calendar works against us.
Good luck, best wishes and sincere prayers.

Who called for the second opinion, you or your doctor? Maybe he can get you in sooner. Do they know how large and agressive this is? Since he's Hopkins trained, does he have any connection that might be able to get you an appointment within a few days. If that doesn't work, can he fax your records and get second opinion over phone within a few days? If, not I wouldn't delay since it is so large.

Take care,
Eileen

Is your concern the cisplatin given weekly in smaller doses, rather than in 3 to 4 larger doses over the course of treatment? Giving smaller doses weekly appears to be the latest standard -- based on the postings of others here, such a schedule may serve to ameliorate some of cisplatin's side effects.

No that doesn't bother me. It's the using Cisplatin only, not in combinat ion 5-Fu. He told me there were no definitive studies showing one is better than the other. But my reading on the interent says "most" show increased survival time.

I feel I only have one shot at this. I'm worried that I'm getting a "standard" protocal rather than a "personal" treatment regimen. This is not HPV where chances of survival is greater, this is unfortunately a smoker's tumor.

Sandy,

First let me say that I understand what a wrenching time this is...I still say, it was the hardest part of our whole experience with OC...the waiting and slugging thru the DX process.

Perhaps there is another facility nearby....I know JH is considered tops, but I was able to get an appt at Moffitt CC in Tampa within a week of calling. Thankfully, Moffitt's team backed up what the local doctors were prescribing (and knew them)and made it possible for us to get treatment locally. We are still seeing the Moffitt team for followups. In other words, it just might give you peace of mind to have another opinion.

As you can see by my signature, Bill received Cisplatin and Taxol weekly along with rads, no Erbitux. He had no nodal involvement.

I wish you the best thru this process...it is so stressful. The bottom line is you do the best you can to get a good treatment plan in place and then you have to trust your decision and your docs and go with it.

Hugs, Deb

I was one of those that only got one official opinion for my treatment plan. Although, my doctors brought everything before the tumor board and talked on the phone with some folks from MD Anderson because they have close ties with them. So you may ask if your doctor could do the same for you? I can't really help you out with your treatment plan though - I had surgery first (partial glossectomy and bilateral neck dissection because of a positive node) and then radiation with Carboplatin (weekly dose).

Sandy,

IMO if they are going to go with weekly Cisplatin concurrent with 70 or 72 gys of radiation using IMRT then go for it. That's the same Tx I had except back in my day the big bags of Cis were used which did cause me some problems. I don't believe any 2nd, 3rd or 4th opinion is going to change this recommended Tx plan.

David, I really appreciate your responses. After my med oncologist consultation, I expressed my concerns to my rad oncologist today. They are considering a more aggressive treatment, possible induction therapy to beat up the tumer, and them radiation.

Have to be careful. As my doctor put it, "You have to weigh the percentages." If my survival increase is significant, then yes to the more aggressive treatment, but if the increase is only 5% more and your totally miserable, then it may not be worth it.

So they're sorting it out. I'll probably hear from them by Monday.

BTY: HPV tongue cancer is much more responsive to radiation/chemo, than mine.

Thanks for your thoughts
Sandy