My Sweetheart has cancer

Christine Gabrielle said:

We live very close to one another

Hello Helen,

Thank you so much for your post.  We live in Concord.  Helen it was actually one of your earlier posts that inspired me to join this forum.  Everyone was so kind and caring to you.  We will have to stay in close contact since our husbands will be going through this about the same time.  May I ask how soon your husband's surgery was scheduled once you'd gone to the initial visit at Stanford.  I will update our profile once we learn the exact terms and such.  Also....I do have an iphone and I love the idea of recording the doctors visits that is a wonderful idea.  We have grown children that want to know every detail but are not able to go to all visits with us.  Thank you again for everything and I will add both you and your husband to our prayers.

It's a beautiful day, enjoy the sunshine!

Christine

Well, yes you are very close indeed. Howdy, my neighbor over the hill!

Initially, we were just going to follow the first advice we got, which was to just go to the nearest place (in our case, Alta Bates) and get started on radiation, maybe Chemo. Then, a different doctor said, "get out of town, go to a teaching hospital with a tumor board" and so we did. We got a call back from Stanford and met with their tumor board.  After seeing my husband and reviewing his case, believing that my husband's cancer was in an earlier stage, they recommended surgery. Their feeling was that if you can avoid radiation in a younger person, then you eliminate the later risk of a secondary cancer from radiation 20, 40 years down the road. 

From the tumor board meeting to the surgery was two long weeks. He had TORS (robotic) surgery to remove the tongue tumor and a neck dissection, reomoving 45 lymph nodes.

I'm sure you will or have heard this already--for quite some time now, surgery has not been recommended for head and neck cancers as it was discovered that radiation and chemo worked just fine and the surgery for such cancer was VERY invasive, disfiguring and not always successful at removing the cancer. That has recently changed a bit since the development of a robotic surgical machine. It enables the doctor to get surgical robotic "arms" into the mouth (without breaking the jaw to get in there) and it allows them to see down the curve of the tongue better. It's pretty incredible, really. Recovery time is much faster than with conventional surgery. 

Now, that said, it doesn't mean that it's always the best plan to have surgeries first. In our case they wanted to try it in case it was early enough to do it and avoid the radiation altogether. The fact that my husband's cancer is HPV+ was a factor in their recommendation because some studies are showing that HPV+ cancer might be getting over-treated. It's been treated the same way as other oral, HPV negative cancers and some are thinking that they can try to de-escalate treatment for HPV+ cancers. 

But, as it turned out, the cancer was not early, there were multiple positives nodes, when only one had beed seen on the PET scan. So, it was only after his lymph nodes were removed that they discovered the other positive nodes. My husband's cancer was pathologically staged T2N2bM0. Stage 4a. He ended up needing both radiation and chemo anyway. His surgeon was surprised. 

So, would it have been better to have just done radiation and chemo in the first place and avoid surgery? Maybe. But then again, they wouldn't have known about the extra positive lymph nodes and maybe wouldn't have hit that side with enough beams. Or maybe, without knowing about the extra nodes we would have skipped the chemo, and possibly that would have been a mistake. Honestly, we just don't know. The surgery for my husband was no big deal and at least now we know exactly what we're dealing with.

Stanford is a great place to go, they really know this stuff. There are many ways to approach this cancer and there is a very high cure rate. So, listen to the experts, and don't hesitate to ask them to explain anything you don't understand. Take advantage of the time you have them sitting in front of you.

Good Luck on Monday! We'll keep in touch!

Helen

Christine Gabrielle said:

Update

Alan had his surgery last Wednesday at Stanford.  His 5 hour surgery went  7 1/2 hours.  Dr. Kaplan removed his tonsils quickly but the second procedure gave him a bit of a surprise.  The Lymphnode tumor was cuffed around his artery and had clamped the veins and nerves that were trying to compensate for the artery.  It took a long time to untangle and remove it all.  Dr. Kaplan said that he did in fact get all the cancer and had taken large margins to do so.  He also had to take a muscle and create a reinforced wall in Alans neck/throat.  Thank goodness for this amazing man!  We came home Sunday with only his feeding tube.  All other drains and such had been removed.

Slight glitch yesterday though.  Alan had been so constipated that once he felt he was going to have success he pushed really hard and pushed his feeding tube out.  I called Stanford and spoke with one of the Doctors that knew his case and was told to go ahead and take it out the rest of the way.  He had been healing well and they felt that taking it out one day early would be alright.  So today he is on clear liquids only.  We go tomorrow for his post op to remove his staples.  I believe he will not start radidation for a few weeks yet.  Thank you all again for your support and  guidance.  We are positive and he is doing well.  Bless you all!

Christine

 

 

Hi Christine!

I am fairly new to this forum also and must admit that I read often and post little.  Glad to hear your husband is doing so well!

My husband was diagnosed in early February with right tonsil cancer and 1, possibly 2 lymph nodes involved. The tumor board met and said he had 2 options, either surgery and then radiation with possible chemo if the lymph node was not encapsulted OR no surgery and proceed with concurrent chemo and radiation.  After debating it, we chose to skip surgery and proceed with radiation and chemo.  Hubby has had 2 big rounds of Cisplatin and 35 radiation treatments. He has 3 more radiation sessions to go!  Seems like most here have had surgery initially.  We were told the regional cure rate/5 year survival rate were equal either route we chose  Oh and this was HPV + 16 which I have been told is more treatable.  It is a rough treatment, but doable. My husband did not get a PEG (should have) and is only drinking Ensure for his nutrition. Has lost 30-35 lbs.

Glad you are staying positive!  Hopefully our husbands will beat this and have NED in the near future!

Pam 

Christine Gabrielle said:

Update

Alan had his surgery last Wednesday at Stanford.  His 5 hour surgery went  7 1/2 hours.  Dr. Kaplan removed his tonsils quickly but the second procedure gave him a bit of a surprise.  The Lymphnode tumor was cuffed around his artery and had clamped the veins and nerves that were trying to compensate for the artery.  It took a long time to untangle and remove it all.  Dr. Kaplan said that he did in fact get all the cancer and had taken large margins to do so.  He also had to take a muscle and create a reinforced wall in Alans neck/throat.  Thank goodness for this amazing man!  We came home Sunday with only his feeding tube.  All other drains and such had been removed.

Slight glitch yesterday though.  Alan had been so constipated that once he felt he was going to have success he pushed really hard and pushed his feeding tube out.  I called Stanford and spoke with one of the Doctors that knew his case and was told to go ahead and take it out the rest of the way.  He had been healing well and they felt that taking it out one day early would be alright.  So today he is on clear liquids only.  We go tomorrow for his post op to remove his staples.  I believe he will not start radidation for a few weeks yet.  Thank you all again for your support and  guidance.  We are positive and he is doing well.  Bless you all!

Christine

 

 

HI Christine,

Don't you hate those surgical surprises....our surprise was that there were multiple nodes. Darn it all! 

Oh, and the constipation, you should plan to stay on top of that before treatment starts. My husband had that problem from the surgery (pain meds) and then again from the chemo. Next round of chemo we will be prepared. Ducolax was the suggested product from our chemo guy. And, of course, hydration.

Thanks for the update, I've been wondering about you guys!

Helen

HelenBack said:

Pam, i'm curious about what you said

about your husband needing the Peg and not getting it. Whose idea was it for him to go without it? Both of our oncologists said my husband would probably not need it, because of his age (44) and good health. But he really doesn't have any weight to play with and one week into treatment, due to sleepiness and hiccups, he's already lost a few pounds. the whole thing makes me nervous.

How did your doctors say they would assess the situation? At what point did you feel that it was a mistake not to get it?

Just trying to get my head around it.

Thanks,

Helen

 

Helen,

I have not started my radiation yet but I met with the radiation oncologist at the Mayo Clinic today and he said that they try to avoid using the PEG because it is so important to continue to swallow throughout the treatment because otherwise there is a chance that the patient can lose the muscle memory for swallowing and become dependent on the PEG long-term and then it is difficult to recover natural swallowing later.  He said as hard as it is, it is important to continue to try to get fluids and nutrition through swallowing and avoid dependency on the PEG.   Everyone is different, but he said that in my case the PEG will be a last resort to be used only if it becomes nearly  impossible for me to get enough fluid and nutrition through the mouth.

M

HelenBack said:

Pam, i'm curious about what you said

about your husband needing the Peg and not getting it. Whose idea was it for him to go without it? Both of our oncologists said my husband would probably not need it, because of his age (44) and good health. But he really doesn't have any weight to play with and one week into treatment, due to sleepiness and hiccups, he's already lost a few pounds. the whole thing makes me nervous.

How did your doctors say they would assess the situation? At what point did you feel that it was a mistake not to get it?

Just trying to get my head around it.

Thanks,

Helen

 

Helen, 

My husband started this process quite adamant about not ending the PEG, but at the end of week 3 of radiation and 3 days before his 2 nd Cisplatin blast he nearly begged for one.  (procedure was quick, and recovery was fast) He's lost 30 lb, but stabilized right away after the tube. He does admit that he should have just had it from the beginning, but I think his Doc appreciated his strong will, and hoped he could make it as much as he did. In the end, I think he was shocked at how difficult it was to get anything down...mainly due to bad taste and gag reflex. 

He did try the much touted canned peaches and the magic mouthwash, cheesy eggs, etc..just couldn't do it. 

On a positive note, he's 4 rad's from the finish line!!!!!