What to do if you get different treatment plans to consider?

SylMarie · August 2016

Sorry for the long post. I need some feedback from you good folks on the forum.

I had surgery on June 30 at JH. The surgeon has scheduled me for follow-up with him and a rad oncologist on August 23. It is 7 weeks post-op, which worries me, since they recommend you start rads at 6 weeks post-op.

He mentioned on the phone that their tumor board had met and that I was a candidate for rads. He also said he had then reviewed my reports with their chief of rads and that he believed there was rads in my future, but no chemo. I don't know if the rads guy will say the same thing on August 23. I do know that I was told I'd be meeting with just him -- no mention of a medical onc., or a speech therapist or anyone else. I am assuming that means they're not leaning toward adding chemo.

In the meantime, my husband and I just traveled to Mass General in Boston and met with 4 wonderful people in one room: A radiation oncologist, a medical one, a surgeon, and a speech pathologist. They actually said that I would need 6 1/2 weeks of rads, to both the area where the tumor was removed, and the left side of my neck, since there had been no selective neck dissection done. The rad oncologist added that the PET scans I had pre-op would not show cancer cells in my lymph nodes.

The medical oncologist said she recommended that we add a low dose of weekly chemo. In other words, she wants the shotgun approach -- to kill everything now and give me the best chances of no recurrence.

Is it true what they say that different specialties like to use what's in their tool box? That a medical oncologist will want to add chemo -- just because, etc., etc.? It just seems strange that one highly-regarded institution says (so far, at least) that rads is enough, and another says we should add weekly low-dose chemo.

What to do? What happens when you end up with such different treatment plans to consider? Like all of you, I want to get the job done, but without over-kill that damages my body more than necessary.

dygit · August 2016

Shotgun approach

When I was diagnosed, my ENT told me that surgery was not worth doing as it would have cut out most of my voice box and was not going to make a huge difference in beating the cancer (also in 2 lymph nodes). He said that radiation with weekly chemo was the most logical and most efficient way to kill the cancer - hands down. It was echoed by my medical and radiation oncologist. Suggest you read as much as you can and talk to the docs thoroughly....

Ladylacy · August 2016

You

Get another opinion before deciding since you have two different opinions. My husband had laryngeal cancer and he underwent radiation and chemo first. Side effects to the radiation were horrible, even the chemo caused problems and this did not work for him. He ended up having surgery with a great head and neck specialist that he was referred to. His cancer had not spread at all. He did have a partial neck dissection. Wish it was the end of the story but it wasn't.

A year later he was diagnosed with a second primary at the cervical of his esophagus and surgery was ruled out (due to the previous radiation and surgery) since this was almost the exact same spot as the first. He underwent a second round of radiation and chemo. This time the chemo was different and the amount varied every week due to his blood work and weight. This at the time had no spread and was very small. Follow up PET/CT showed all cleared but 4 months later the second tumor was back and larger than the first time and had spread to his right lung. Only thing offered was chemo.

I wish we had gotten a second opinion the first time but we went along with our local ENT and an oncologist my husband was already seeing due to a rare blood cancer because I think a second opinion would have been surgery first because the tumor was large but had no spread. Yes he lost his voice box but you can live with that.

Each doctor/hospital/cancer center has their own protocol and since you have gotten two different opinions a third opinion should be gotten. Radiation has side effects that go on and on and even later down the road. My husband's throat was completely closed off the first time from radiation and it seems no one knew until surgery. Then the radiation can cause the esophagus to close off and it has to be stretched and generally not just once. Some have to have it stretch a lot. We were told going in that head and neck radiation was the worse there is and I believe that.

The main thing to remember is that everyone reacts differently to treatment. Some have minor problems while others have major problems.

Wishing you peace and comfort.

CivilMatt · August 2016

it is a question about treatment

SM,

I don’t know if starting rads today or in 2 months is going to make any difference. If the cancer can be treated successfully, then the few weeks should not matter. From the H&N member perspective, getting rid of it, the sooner the better. Maybe, the surgery was very complete and treatment is just doubling down.

Don’t assume anything about what they are thinking. Just ask and ask and ask.

What kind of surgery did you have? My lymph node was so swollen it was standing room only for cancer cells. Blast those scc buggars.

A little chemo sounds like they feel pretty confident in the surgery and rads. They did not recommend a lot of chemo.

I am hoping it is years of knowledge in the entire teams tool box. Having cancer is bad enough without driving yourself crazy trying to read minds.

The final decisions will all be yours, but there are many treatment plans which will do the job. You can get another opinion, but I bet it will be a little different too. After all, you got cancer, what more can they throw at you.

Each of us had tough decisions to make, I am sure that you will make the correct ones.

Matt

swopoe · August 2016

There is some sort of flow

There is some sort of flow chart (someone help me out here) that docs use that show what kind of treatment is recommended based on what stage you are, spread, tumor characteristics, etc. In my husband's case, we could have just done surgery (remove tumor on tongue and neck dissection) or do that plus chemo and rads. The tumor had not spread to the nodes, but we did the rads and chemo anyway, as you called it- the shot gun approach. All of our doctors agreed with this. And 6 months out of treatment, we think we made the right decision. The purpose of treatment is to kill the cancer and to live. We wanted to do everything and not wonder if we had done enough. So we did. My husband came through the treatment really well. Get another opinion, but ultimately it is up to you and what you feel comfortable with. For us, we have no regrets at this point.

SylMarie · August 2016

CivilMatt said:
it is a question about treatment
SM,

I don’t know if starting rads today or in 2 months is going to make any difference. If the cancer can be treated successfully, then the few weeks should not matter. From the H&N member perspective, getting rid of it, the sooner the better. Maybe, the surgery was very complete and treatment is just doubling down.

Don’t assume anything about what they are thinking. Just ask and ask and ask.

What kind of surgery did you have? My lymph node was so swollen it was standing room only for cancer cells. Blast those scc buggars.

A little chemo sounds like they feel pretty confident in the surgery and rads. They did not recommend a lot of chemo.

I am hoping it is years of knowledge in the entire teams tool box. Having cancer is bad enough without driving yourself crazy trying to read minds.

The final decisions will all be yours, but there are many treatment plans which will do the job. You can get another opinion, but I bet it will be a little different too. After all, you got cancer, what more can they throw at you.

Each of us had tough decisions to make, I am sure that you will make the correct ones.

Matt

Hi, Matt

You asked what type of surgery I had. It was a partial maxillectomy because the SSC was on my gums, toward the back of my mouth, on the upper left side. The margins were "clear," according to the surgeon, with the closest margin being about 1 mm. That is not a good margin and the tumor had grown into muscle (but not bone yet). I think rads are needed because of the margin, tumor size (2.5 cm), and the fact that it was poorly-moderately differentiated.

The lymph nodes appeared negative. One suspicious one was enlarged, so they did a fine needle biopsy of it, and it was normal. No neck dissection. Because there was no dissection done at Johns Hopkins, the folks I met with at Mass General said they would do rads on the left side of my neck in addition to the area where they removed the tumor.

Being new to this experience, I wasn't expecting Mass Gen to say that I also needed rads on my neck AND chemo. Both my husband and I were not expecting this, but I will do what needs to be done. If adding the weekly low-dose chemo (or that's what the med onc said, anyway) gives me more assurance, then I think it makes sense to do it.

Thanks so much. I'm anxious and overwhelmed, so knowing I can come here and get support is a huge help.

SylMarie · August 2016

swopoe said:
There is some sort of flow
There is some sort of flow chart (someone help me out here) that docs use that show what kind of treatment is recommended based on what stage you are, spread, tumor characteristics, etc. In my husband's case, we could have just done surgery (remove tumor on tongue and neck dissection) or do that plus chemo and rads. The tumor had not spread to the nodes, but we did the rads and chemo anyway, as you called it- the shot gun approach. All of our doctors agreed with this. And 6 months out of treatment, we think we made the right decision. The purpose of treatment is to kill the cancer and to live. We wanted to do everything and not wonder if we had done enough. So we did. My husband came through the treatment really well. Get another opinion, but ultimately it is up to you and what you feel comfortable with. For us, we have no regrets at this point.

Swopoe, like you, I don't want to wonder if I did enough.

I'm so glad that your husband came through the treatment well and that he is on the mend. That is just wonderful! May he continue to heal and enjoy better health, and kudos to you for being there through the journey. Our caregivers are everything.

When the medical oncologist at Mass Gen was talking, she told me that I did not want to turn down the additional chemo and later wonder if we had done everything we could. She said it was best to get it done the first time, because it was easier the first time than if there was a recurrence. I was glad to read your post because it validated this. I agree. I've had a rough time digesting so much of this, because when the punch biopsy was done and I was diagnosed, the oral surgeon in my city said it was a "small cancer" and that it may just be a surgical issue. Later, the surgeon at JH to which he referred me, said the same thing, and after surgery, he said he thought he got "great margins" and said he was "happy with the surgery." Of course, nothing is definitive until the post-op pathology report. Lo and behold, at least one margin was only 1mm. That isn't a "great margin." It has seemed that everyone oversells me and gives me hope, then I get let down. I'm not sure if that's what they're supposed to do with cancer patients. I find it exhausting and depressing. Right now, I'm resigned to do both the rads and the chemo.

If the next place I go to (tomorrow), which is in my home state, says that chemo is not warranted, I will still be afraid NOT to have it, because the Mass Gen people told me I needed it to get rid of it.

When I see the rad onc at JH on August 23, if HE says I don't need chemo, I will still worry that I should have listened to Mass Gen!! Now that Mass Gen planted the chemo bug, my brain is going to keep telling me to go have my treatment with them, because now I am scared.

swopoe · August 2016

SylMarie said:
Swopoe, like you, I don't want to wonder if I did enough.
I'm so glad that your husband came through the treatment well and that he is on the mend. That is just wonderful! May he continue to heal and enjoy better health, and kudos to you for being there through the journey. Our caregivers are everything.

When the medical oncologist at Mass Gen was talking, she told me that I did not want to turn down the additional chemo and later wonder if we had done everything we could. She said it was best to get it done the first time, because it was easier the first time than if there was a recurrence. I was glad to read your post because it validated this. I agree. I've had a rough time digesting so much of this, because when the punch biopsy was done and I was diagnosed, the oral surgeon in my city said it was a "small cancer" and that it may just be a surgical issue. Later, the surgeon at JH to which he referred me, said the same thing, and after surgery, he said he thought he got "great margins" and said he was "happy with the surgery." Of course, nothing is definitive until the post-op pathology report. Lo and behold, at least one margin was only 1mm. That isn't a "great margin." It has seemed that everyone oversells me and gives me hope, then I get let down. I'm not sure if that's what they're supposed to do with cancer patients. I find it exhausting and depressing. Right now, I'm resigned to do both the rads and the chemo.

If the next place I go to (tomorrow), which is in my home state, says that chemo is not warranted, I will still be afraid NOT to have it, because the Mass Gen people told me I needed it to get rid of it.

When I see the rad onc at JH on August 23, if HE says I don't need chemo, I will still worry that I should have listened to Mass Gen!! Now that Mass Gen planted the chemo bug, my brain is going to keep telling me to go have my treatment with them, because now I am scared.

One of my husband's margins

One of my husband's margins was 2mm. The docs said that was too close for their comfort. My husband was only 40 when diagnosed. We have 3 young kids. We didn't want to take any chances.

What to do if you get different treatment plans to consider?

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