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Robotic surgery recommended

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

Today, I saw a Mayo head and neck cancer surgeon.  Despite several MRIs, PET scans, and scope examinations of my oral cavities, they still have not found the primary site of the cancer.  The only place it has shown up is in the lymph nodes, both sides.  Their recommendation is robotic surgery where they would biopsy each possible site, one at a time, and if and when they find the cancer they would remove the cancerous tissue.  They might end up doing both sides of the tongue and both tonsils, but if they find it earlier they would stop and not do everything. They are also proposing removing the cancerous lymph nodes during the same surgery, using robotic surgery.

They told me that robotic surgery is less invasive and more precise, so that I will have fewer side effects and a shorter recovery than if I had a conventional surgery to remove my lymph glands, tonsils and parts of the tongue. 

They also proposed doing only radiation after the surgery focus on the neck and oral cavity, without chemo.  The proposed course of action is the surgery followed by 2-3 weeks of recovery, then begin radiation 4 weeks after surgery and continue radiation for 6 weeks.  They said the last two weeks would be the most difficult part of the radiation treatment. 

The surgeon said that, yes, the surgery will change me but that the only lasting side effects will be a dry mouth and scars on my neck.

Some questions:

(1) What experiences have people had with the robotic surgery? What the up sides and the down sides?  Is it true that side effects and recovery are better?

(2) Is it true that lasting effects are probably only going to be dry mouth?  Sounds too good to be true.

Thanks, everyone.

Michael

 

 

 

 

phrannie51's picture
phrannie51
Posts: 3730
Joined: Mar 2012

"fishmanpa"....he just had exactly the same surgery that Mayo is suggesting for you at John Hopkins....he didn't have a primary, either....so they did biopsies, plus did the neck resection with the robotic surgery.  I think he posted in your original post and kind of told you what he went thru with the surgery.  Robotic surgery is extremely precise, and therefore less damage is done to good tissue.

Every person so far that I've met on here, including myself got dry mouth (now this is desert mouth....no spit at all), and lost their ability to taste during radiaton....these two things take a bit of time to come back after radiation is over.....for some they never come all the way back.  There are other side effects when going through radiation, but most go away within the month after radiation ends.  The two weeks following the last radiation are actually the most difficult time, as you keep on cooking even after rads are over....then the healing slowly begins. 

**had to edit this....another side effect that most seem to get is the mucous....lots of it.  I didn't get it myself, but I had Amifostine during radiation which I'm sure is the reason I did not.   

p

PS....so far....the only side effects of radiation I still have are....dry mouth (about 30% of my saliva is back).....and taste fatigue (I can only taste the first 3 or 4 bites of food, and then it goes tasteless).  I got done with radiation last June 15th. 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Michael,

Again, this sounds very close to what I have experienced. Obviously a few variations, but all in all quite similar.

I have a true unknown primary after two surgeries and biopsies. I had two sets of tonsils removed and 4 sets of biopsies done (tonsils, nasopharygnx, back of tongue, throat, 2 larygoscopies...) and they still didn't find the primary. I had the cancerous lymph nodes removed from the left side of my neck. 

Yes, this will change you physically. Not morbidly so, but you'l feel and see it. But then, cancer changes you from the moment you're diagnosed. 

(1) What experiences have people had with the robotic surgery? What the up sides and the down sides?  Is it true that side effects and recovery are better?

My initial tonsil surgery (palatine tonsils, biopsies and laryngoscopy) was done conventionally. My second surgery (lingual tonsils, more biopsies and another laryngoscopy) was done by the robot. I can tell you, based on my experience it is. Also, I know that the robot is definitely more precise just based on videos I've watched of it in action, some of them by my surgeon! That being said, surgery to your neck, regardless of method is highly invasive and traumatic. Add to that the removal of your tonsils, lymph nodes and chunks of tissue from your tongue and other areas, you're left feeling like you swallowed ground glass and chased it with rubbing alchohol for several weeks. I'm not going to sugar coat it, it sucks! BUT, the robotic surgery was an easier recovery. Expect nerve (weak shoulders, nerve pain etc.) and swallowing issues. The pain is brutal but manageble with narcotics. One other thing.... getting surgery is not something I looked forward to but being that it was going to be done by a robot was pretty cool! It looks like something off of an alien ship! 

(2) Is it true that lasting effects are probably only going to be dry mouth?  Sounds too good to be true.

There are 60 side effects or more one can experience with radiation. One of the most common and affects everyone is dry mouth. I'm three treatments in and I'm still Ok. I can still taste too. I expect that to be gone soon.  Perhaps one of the others can find that list and post it. Radiation is a tough go but needed to help mop up and destroy any remaining cancer cells left after surgery. I'm surprised they didn't mention chemo. Do ask about it. Not that you want it but if they find cancerous lymph nodes and they have broken through their capsules (as they did with me) then chemo in conjunction with the rads is recommended to destroy any rouge cancer cells that might be on the lymph highway through your body. My Team proposed it only if the tumors broke through, otherwise I woud have gotten rads only. 

Everyone is different concerning how they react to rads and how they recover so it is too good to be true, you'll be a hurtin' puppy after 6 weeks regardless. However, given the choice between conventional and robotic, I'd take the robotic.

The folks at Mayo echo what I heard here at Johns Hopkins. Ultimately, the decision is yours but I gotta tell ya, after researching Cancer Centers in the US, Mayo is a great place to be!

"T"

CivilMatt's picture
CivilMatt
Posts: 2963
Joined: May 2012

Mich4el,

Welcome to the H&N forum.

 

Sounds like you want all the benefits of treatment without the side effects, sounds good I wish I had asked for that package.   It sounds like your team hasn’t finalized your plan until they get the results from a  little primary hunting.  That’s ok, it’s early in the game.

 

Robotic sounds and looks good, but it takes a good operator.

 

Having a dry mouth is one of the side effects of having radiation as are voice problems, teeth problems, lack of saliva and lack of taste to name a few. There are many more issues some great and some small, we each get to decide for ourselves.

 

You have 4,346 of us here at the H&N forum with 4,346 different plans on how to kill the beast.  The one thing we definitely share is our desire to kill the beast and go about our life’s.  Your plan will vary from mine, but it will get the job done.

 

I wish you the best of luck and a smooth ride.

 

Matt

jcortney's picture
jcortney
Posts: 423
Joined: Sep 2012

Michael,

I just wanted to share with you a conversation that I had with my ENT (who diagnosed me and is one of the top robotic surgeons in Dallas) when I went in to see him after Chemo.  My Oncologist wanted me to meet with him to see if he agreed that the chemo had wiped everything out.  The point here is I decided NOT to have surgery and went Chemo/Rad instead.  While we were talking I said that it was a really close decision for me and I'll never know if I choose correctly between surgery and chemo/rads.  He said "if your lymph nodes were not affected on BOTH sides, I would have argued much harder for surgery.  Since you were bilateral I would have had to cut your neck open almost from ear to ear to get and check all the nodes."  My only reason for bringing this up is that you might want to ask your surgeon about it.  Also, I assume since this was at Mayo you saw an Oncologist & Radiologist also?  Did it go to a tumor board and surgery was the decision?  If that didn't happen you might want to get a team involved.

Best of luck to you.

Joe Cortney

Dallas, TX

Grandmax4's picture
Grandmax4
Posts: 585
Joined: Dec 2011

understand how a surgeon can tell you what your side effects will be....November 2,2011, I had de vinci robotic surgery to remove my epiglottis....I was cut from ear to ear, with 4 lymph nodes removed. I can truthfully tell you, I would do it exactly the same, if I had it to do over. The nodes were cancer free, so no chemo or radiation was needed (blessed) I do have a faint scar, but it's in my neck crease and unless it's pointed out, not noticable. The mucus was my worse side effect, it seemed to last forever, realistically, I think it was 5 months. I attended speech therepy because my voice was gone and also to learn a new method of swallowing without an epiglottis...with months of therpy and faithfully doing the exercises, I regained my voice strong and clear, after a year of soft food, I can now eat anything I want. My left ear is numb, but I can hear out of it. My throat somedays feels very tight and I have a turkey throat right under my chin...Dr says it will go away, been 1 year almost 5 months. I did not get dry mouth and my shoulders were not affected as I was told they might be.

Everyone is different, side effects vary....my Surgeon and His team have been and are wonderful. He gave me His e-mail and if I have a question or concern, He always answers even 2x when He was out of the country.Yet, He has never told me what will take place down the road, I trust Him completely and feel safe with Him as my Dr

I pray the same for you, whatever your decision will be

 

 

tommyodavey's picture
tommyodavey
Posts: 358
Joined: Nov 2011

Hi Michael,

I had Mucoepidermoid Carcinoma.  They found a tumor on the right base of my tongue and it was removed via TORS. Transoral robotic system.  Was warned that they may chip a tooth or two but that didn't happen.  Overall the partial tongue removal surgery went well.  My pain I was told was similar to having your tonsils out.  I won't lie, it hurt.  But time heals the wounds and after that I had a radical neck dissection where 45-60 lymph nodes were removed.  Two were positive.  My surgeon also removed my right parotid gland. (salivary) and moved my left one to the center of my chin and told the radiation team to avoid that spot.  So luckily I was left with one major salivary gland and am very pleased with having at least 50-60% of my saliva.  No more drooling while I nap anymore!

 

At night, I now sleep with my mouth open.  Why, I can't say.  But I do wake up several times to spray some Stoppers4 in there and go back to sleep.

 

Like you were told earlier, we all have slightly different treatment so it's impossible to say how yours will turn out.  I didn't read what type of C you have but a good guess would be SCC due to not being able to find the primary.

 

If you need anymore info, send me a PM or email @ labiker@hotmail.com

 

Good luck with your surgery!

 

Tommy

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