Scary message from rad onc after the CT and mask-making

SylMarie · August 2016

I just had my mask made 5 days ago. As you all know, they do a CT scan at the same time. Well, I got an email message from my rad onc early this morning, stating that he saw a number of lymph nodes on this week's CT scan that he thought may be wise to further investigate with ultrasound, and possible biopsy of the nodes, if the ultrasound shows features that suggest cancer. My surgery for a gingival tumor (I had a maxillectomy) was on June 30. Before the surgery, my husband and I asked the surgeon and his resident more than once whether I should have a neck dissection. They told us it was not necessary in my case, since they had done a fine needle biopsy of the one suspicious lymph node, and that had been negative. The surgery was 4 hours, even without a neck dissection. Maybe they just didn't have time on their schedule?

This past week I saw my surgeon at his first available appointment after my June 30 surgery. The same day, I had the CT scan and my mask made. Now, I am very worried that the neck dissection should indeed have been done. The fact that it was not done, and that now there are suspicious lymph nodes on the scans, may mean that the cancer has spread to lymph nodes, which changes everything. It not only puts me in a whole different group as far as statistics, but may also mess up my treatment schedule.

If the ultrasound comes back suspicious and they do biopsies now, I suppose they mean to do actual biopsies and no fine needle ones. They may decide they need to do a neck dissection now. And I guess that means we would be delaying rads and chemo even longer?

The rad onc said he would call me back around noon today so we could discuss it. I am really nervous now. So far in my journey, it seems that the bad news just keeps on coming.

CivilMatt · August 2016

you are getting there

SM,

They are just making sure they have an all-inclusive plan for your treatment. I can’t imagine there is anything nefarious going on. Many H&N members with active lymph nodes opt for no surgery and the cancer is treated successfully. Others, like myself have had surgery and it too was successful.

When a person gets multiple opinions, you get multiple treatment plans, all of which can get the cancer. You have your mask, you are moving forward, and you will be in the middle of treatment soon.

I understand your confusion and angst; you rely on the experts for clarity, confidence and hope during this pre-treatment time.

Like most off us, you will be moving to the rhythm of treatments very soon, then on to recovery and this time will be stored in your memory banks.

Best of luck,

Matt

SylMarie · August 2016

Matt, thanks. You always seem to know what to say.

The rad onc called us and said he thought the reactive lymph nodes could just still be around as a reaction fro the June 30 surgery. That seems like an awfully long time to be around, but what do I know? He said he would just be remiss if he didn't explore them. He wants me to arrange for an ultrasound ASAP in my home town, in a facility that can do biopsies right then and there if they see anything suspicious. He said that only after we know the result of those, can he and the rest of the rad team plan my treatment. It has to be put on hold until we know what is going on in those lymph nodes.

I appreciated that he also said that he did not want to "over-treat" with higher amounts of rads on my neck, if it turned out that the nodes were just still reactive to surgery. On the other hand, if they are positive for cancer, then they will have to determine if they should do a dissection before treatment, or up the rads.

You're right that they're just trying to do the best treatment. I wish my emotions could stay in check better. I stayed calm on the phone with the doc but inside, I am a wreck. My husband is also very distraught, as both of us had been feeling relieved that we finally had a 9/9 simulation day locked in, followed by the beginning of rads/chemo treatment on 9/12. Now, we're up in the air again. Oh, well... It is what it is.

Thanks so much for helping me focus on what really matters -- the right treatment plan.

SylMarie · August 2016

Some kind of auto-correct

Some kind of auto-correct feature on this page continues to change the word s-u-s-p-i-c-i-o-u-s to "suious" whenever I type that word. Very strange!

CivilMatt · August 2016

SylMarie said:
Some kind of auto-correct
Some kind of auto-correct feature on this page continues to change the word s-u-s-p-i-c-i-o-u-s to "suious" whenever I type that word. Very strange!

hmmm

That is suspicious.

CivilMatt · August 2016

weird!

you are correct.

Barbaraek · August 2016

CivilMatt said:
you are getting there
SM,

They are just making sure they have an all-inclusive plan for your treatment. I can’t imagine there is anything nefarious going on. Many H&N members with active lymph nodes opt for no surgery and the cancer is treated successfully. Others, like myself have had surgery and it too was successful.

When a person gets multiple opinions, you get multiple treatment plans, all of which can get the cancer. You have your mask, you are moving forward, and you will be in the middle of treatment soon.

I understand your confusion and angst; you rely on the experts for clarity, confidence and hope during this pre-treatment time.

Like most off us, you will be moving to the rhythm of treatments very soon, then on to recovery and this time will be stored in your memory banks.

Best of luck,

Matt

Matt, you are the personification

of calm and steady. Great words there. Hang in there Sylmarie, you'll be on the road to treatment soon.

Barb

SylMarie · August 2016

It gets weirder and weirder...

So, late last evening, I got another message from the rad onc. He basically said, "Never mind!" He said he spoke with my surgeon, who told him they had done a fine needle biopsy on a lymph node the day before surgery last June, and it had been negative. The rad onc said this pronouncement by the surgeon had now made him (the rad onc), confident that we could proceed with the treatment plan without further ultrasound and possible needle biopsy.

Huh?? Did he forget that just hours before, he had told us that he had seen "a number of lymph nodes" on the most recent scan, on August 23d? Since when does "one lymph node" (biopsied in late June) mean the same as "a number of lymph nodes"? Well, my attempts to get that clarified with the rad onc, through the same mode of messaging, have gone unanswered. Meanwhile, my husband and I are very worried that something is amiss, and the docs just aren't stepping up and explaining what we consider to be a big discrepancy. If indeed there are "a number of lymph nodes" looking weird on the most recent CT, then there is no question that another ultrasound and exam needs to be done before planning my radiation treatment. It boggles my mind that the rad on seems so cavalier about this. It is MY life. The first go-round is THE time to do everything possible to eradicate whatever cancer is left over after they removed my tumor.

We have spent all day calling, and reaching out to our local GP, who reached out to a local onc we saw a couple of times since my diagnosis. They are waiting to find out what to do next, and whether they need to get me in quickly to see a good local doc who can do the ultrasound and be ready to biopsy anything, should it be necessary. In short, the rad onc's message and call yesterday morning caused a lot of upheaval, and his attempt to walk it back later on yesterday, did nothing to allay our new fears.

I just want this craziness to end. Rarely have I heard of such a huge run-around as I have received since my diagnosis. It seems that there has been one thing after another. Maybe the big cancer institutions have the brain power, the research, and the prestige, but oh, Lord, there seems to be a trade-off. Things like confusion and lack of communication or miscommunication run rampant.

CivilMatt · August 2016

wow

SM,

Both the ENT surgeon and rad onc usually go where the scans and exams lead them. The rad onc much of the time has limited input on surgery. After all, the rad onc does not do any surgery. A PET scan should have shown ALL areas of activity both cancer and not cancer. After confirming the target areas (could be lymph nodes, tonsils, tongue, soft palate, etc.) the plan is made.

You must have some border line areas on whether to have surgery, rads, one or both. The rads will most likely target ALL areas of potential cancer.

Keep to your guns, pin them down with your concerns, get a good answer and move on.

I am so sorry your start has been hit-or-miss. Hopefully, your questions will be answered and you can transition into an area where we all know some hints on treating side effects.

For me, I felt a lump (no pain), 3days later gp, 1 week later ENT, a couple of weeks later tongue and lymph node surgery, less than a month a PEG and treatment began. Woe is me.

You need to select some music for rads. Kind of nice and scary at the same time.

See you later.

Matt

SylMarie · August 2016

Thanks, Matt! I already had

Thanks, Matt! I already had the surgery. The reason the rad onc was "concerned" about the lymph nodes from the recent CT scan (when they made my mask), is that if there was something there, he would add more juice to the neck radiation. Right now, without evidence that the "reactive nodes" are cancerous, he would keep the rads amount lower.

Thanks for your well wishes. I want very much for things to get started, so I can get treatment under way. As I said, my husband and I had been glad that we finally had dates for simulation (first time with mask), followed by the beginning of the rads and chemo. This craziness now may delay things, and I don't think delay is ever good.

For now, I am going to try to get my mind on other things, cross my fingers, pray, and hope that somehow, all these crazy things stop coming up. My confidence in this treatment institution has been shaken -- perhaps unfairly -- I don't know. Maybe this is the sort of thing that just happens. It has just happened more frequently with these folks than I ever anticipated. Maybe I am being overly-cautious or sensitive, but if we don't pin them down, we may regret it one day. When it comes down to it, it is no skin off their teeth if they don't do their very best right now. It is the patient and his/her family that suffers.

Many thanks.

donfoo · August 2016

humm....

When it comes down to it, it is no skin off their teeth if they don't do their very best right now. It is the patient and his/her family that suffers.

I've never heard the comment the medical professions are doing anything less than their best all the time. There are certainly differences of opinion and options for treatment but each has their own best reasons for their position.

If for a second you feel you are not getting 100% from your doctors, consider getting other opinions ASAP.

SylMarie · September 2016

donfoo said:
humm....
When it comes down to it, it is no skin off their teeth if they don't do their very best right now. It is the patient and his/her family that suffers.

I've never heard the comment the medical professions are doing anything less than their best all the time. There are certainly differences of opinion and options for treatment but each has their own best reasons for their position.

If for a second you feel you are not getting 100% from your doctors, consider getting other opinions ASAP.

donfoo, I am just not

donfoo, I am just not comfortable with inconsistent statements from the same doc, in the same day, with no adequate explanation of why the position was retracted. Words carry a lot of meaning and I am a very careful listener with the mind of a steel trap.

In any event, things have resolved enough and I am moving forward. Thank you.

MJG1 · September 2016

Barbaraek said:
Matt, you are the personification
of calm and steady. Great words there. Hang in there Sylmarie, you'll be on the road to treatment soon.

Barb

Barb-Matt

Barb, I thought the same thing about Matt. It is very reassuring when he speaks to any of us about our fears and what we face...Thanks, Matt!

CivilMatt · September 2016

SylMarie said:
Matt, thanks. You always seem to know what to say.
The rad onc called us and said he thought the reactive lymph nodes could just still be around as a reaction fro the June 30 surgery. That seems like an awfully long time to be around, but what do I know? He said he would just be remiss if he didn't explore them. He wants me to arrange for an ultrasound ASAP in my home town, in a facility that can do biopsies right then and there if they see anything suspicious. He said that only after we know the result of those, can he and the rest of the rad team plan my treatment. It has to be put on hold until we know what is going on in those lymph nodes.

I appreciated that he also said that he did not want to "over-treat" with higher amounts of rads on my neck, if it turned out that the nodes were just still reactive to surgery. On the other hand, if they are positive for cancer, then they will have to determine if they should do a dissection before treatment, or up the rads.

You're right that they're just trying to do the best treatment. I wish my emotions could stay in check better. I stayed calm on the phone with the doc but inside, I am a wreck. My husband is also very distraught, as both of us had been feeling relieved that we finally had a 9/9 simulation day locked in, followed by the beginning of rads/chemo treatment on 9/12. Now, we're up in the air again. Oh, well... It is what it is.

Thanks so much for helping me focus on what really matters -- the right treatment plan.

thanks

Barb, MJG1 & SylMarie,

Thank you, you are all very kind.

It is a good thing that it is summer, because my head is so big now I can’t get a hat on.

There are a lot of H&N members which came before me and if you pay attention there is much to learn from them. Even though I don’t know any of you, I feel like I do and I share in your victories and heart aches.

Enjoy the Labor Day Weekend.

Matt

ratface · September 2016

It's a calling for these guys

No doctor in their right mind would do this for a living without some feeling of it being a calling. There are many other areas where they could make more money. You are right to be inquisitive but at some point you just have to get on the bus. Ask for copies of every single procedure as well as copies of doctors notes, they are quite revealing. Get copies of your lab work and any scan test along with summaries. Ask for your staging formula and then learn how to read it. If you should need a neck disection there is absolutely no reason it can't be done after rads and chemo. Lymph nodes are like strings of Christmas lights so it's easy to see why more than one can seem to be involved. I've never heard of anyone getting one lymph node removed. It's always a string of them. This is incremental treatment and there is no set order for any of it. Protocols differ at different hospitals. Just get started and adapt along the way. All the best!

Scary message from rad onc after the CT and mask-making

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