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Scheduled for marginal mandibulectomy & radiation #192323
05-02-2016 05:52 AM
05-02-2016 05:52 AM
Joined: Dec 2013
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Vithal Offline OP
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Vithal  Offline OP
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Kindly need information, guidance and goodwill..

My father's cancer (Squamous Cell Carcinoma, Buccal Mucosa, Right Cheek) was first diagnosed on 08-Dec-2013 and we took alternate medicine for about 11 months. We got him operated on 06-Nov-2014 – wherein, the doctor did a complete excision of the tumor and also performed neck dissection(I,II,III zones). There was no spread of cancer to Lymph nodes. The oral defect was covered with Buccal Fat pad.

However, right after the rile tube was removed, the doctor discovered a white suspicious patch right where the defect was covered. Upon biopsy, it turned out to be a recurrence of squamous cell carcinoma on the right mandible (lower gingiva) and has features of grade I, well-differentiated, infiltrating the stroma.

We restarted alternate medicine, instead of going with the prescribed option of a surgery (semi-mandiblulectomy) and have been taking medicines since then.

It has been 1.5yrs since surgery, and the tumor size has increased suddenly over the last 2 months. As the tumor is spreading to the edge of the lips, we have again gone out and this time taken, PET CT Scan(Whole body) and OPG of the mandible.

PET scan did not detect cancer in any other region of the body and OPG of the mandible did not show any invasion to the bone.

As my father is 68 and already a bit weak from Cervicle Spondilitis, he is scared of the proposed composite resection(Commando Surgery) and therefore, upon multiple consultations, we again went back to the doctor who did the first surgery. He said that another round of marginal mandibulectomy would be sufficient, though it will carry more risk of recurrence, the follow-up prophylatic radiation should be able to prevent recurrence.


Kindly need your guidance on the following:

1) Has anyone in this forum gone through a similar experience?

2) Is the preventive radiation going to be as detrimental as the normal course of radiation given to shrink tumors?

3) Is there anything we could do prior to the surgery/radiation to reduce the side effects of radiation?

4) The doctor is advising a tongue flap. Has anyone had a tongue flap and would you kindly share your experience?

Appreciate your kind comments at the earliest..

Regards
Vithal

Re: Scheduled for marginal mandibulectomy & radiation [Re: Vithal] #192329
05-02-2016 02:19 PM
05-02-2016 02:19 PM
Joined: Jun 2007
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ChristineB Offline
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ChristineB  Offline
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Im very sorry to read about everything your father has gone thru!

The only scientifically proven ways to eliminate SCC at this time are thru surgery and radiation with or without chemo. Im unsure of what you mean by saying your father has been treated by alternative treatments. Im also unsure of what you mean by prophylactic radiation. Most of us here have done IMRT type of radiation between 30-36 treatments.

I think you will find many helpful posts by taking some time to read thru hundreds of posts about radiation or on the main OCF pages (link is listed below). By reading and educating yourself about conventional treatments it will help you to be a strong patient advocate for your father.

While every single one of us, patients and caregivers wish there was a less invasive way to eliminate this horrible disease, it simply isnt available yet. At OCF we always encourage members to find the very best medical team they can and go with it. If they are fortunate enough to live near a comprehensive cancer center (CCC) then that may be the best place to treat the patient, especially when facing a recurrence. Time is also an important factor when treating a recurrence. Often when cancer returns it moves very fast so please dont take too much time making the important treatment decisions.

Best wishes with everything!

Main OCF pages--- Radiation




Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: Scheduled for marginal mandibulectomy & radiation [Re: Vithal] #192341
05-04-2016 09:47 PM
05-04-2016 09:47 PM
Joined: Dec 2013
Posts: 7
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Vithal Offline OP
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Vithal  Offline OP
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Thank you Christine.

Re: Scheduled for marginal mandibulectomy & radiation [Re: Vithal] #192758
07-21-2016 11:28 PM
07-21-2016 11:28 PM
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Posts: 7
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Vithal Offline OP
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Update and request guidance...

My father went through the surgery - wide excision of the tumor + marginal mandibulectomy, defects covered intra-orally with tongue flap. The margins were very close, less than 0.1mm - which pretty much means the surgeon was not able to completely take the cancer out. Good news is the biopsy report shows no perineural invasion, no extra capsular spread and the bone is not involved.

He is now going through 30cycles of IMRT to the tumor bed and all the area from parotid glands to sub-mandibular salivary glands and also to the lymphatic channels - as he had the lymph nodes taken off during the first surgery.

The above has resulted in severe trismus to the extent that the gap has now reduced to less than one finger. We have about 6 radiation sessions pending, but he is in severe pain of the lower jaw and neck area. We already had two 3-day courses for fungal infection, but the doc says his oral hygine is not good. We just got a NG tube fitted as he is finding it difficult to swallow.

Could anyone kindly provide guidance on dealing with Trismus, dealing with the last week of radiation and living through oral mucosites. Until what time will effects of radiation persist? What more should we expect as other side effects in the last week of radiation?

Regards,
Vithal



Re: Scheduled for marginal mandibulectomy & radiation [Re: Vithal] #192759
07-22-2016 05:12 AM
07-22-2016 05:12 AM
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ChristineB Offline
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ChristineB  Offline
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Here is what I wrote to another member recently (with a few minor edits) .....

During rads, it will get progressively more difficult to eat as treatments continue. Best thing I can tell you is focus on what you can control... your fathers intake! Chemo and rads for many patients isnt easy. The hardest thing is to keep your intake high enough. Your father should be taking in at least 2500 calories and 48-64 oz of water daily. If he can take in more like 3000 calories it can only help him get thru this easier. This should be much easier to do with the NG tube.

Having trouble with taking in enough fluids? Your doc can also write an open prescription for your father to get extra hydration in the chemo lab. It will instantly perk him right up, helping him to instant feel a little better. Some patients will make it a habit to go a few times a week.

I know the calories and water intake sound excessive and many patients get concerned about gaining weight. Your fathers body is going thru incredible changes right now and burning up calories much faster than normal trying to fight off the cancer, the treatments all while trying to rebuild itself. This is why its so important to keep the intake at least 2500 calories daily, more is even better and will make the next few weeks/months much easier to get past. This will need to continue until at the very least you hit the first year after finishing rads. Also, its very important to keep swallowing water every single day even if his throat or mouth gets really sore. Believe it or not, swallowing muscles can quickly forget how to function. Your father may need a barium swallow test to make sure he is swallowing correctly and safely. Ask his doc about this.


Pain must be managed. It is not at all helpful for a patient to suffer in pain, it only causes unneeded stress. Relay everything you wrote to your fathers physician and ask for pain meds. Many come in liquid form or most pills can be crushed and mixed with warm water then put thru the tube. Time release capsules cant ever be dissolved and put thru the tube, never! Ask the doc about the fentanyl patch, its a long lasting way to better manage pain. Just be certain to follow directions exactly with never bending, folding, cutting, tearing or otherwise doing anything that damages the patch and no long hot baths or showers when wearing it.

Trismus (lockjaw) is a problem many of us develop. Its not easy to fix. One important thing to be concerned about is is your father's ability to eat and drink. For trismus, some patients have found success by using a device called a therabyte. Most will start using this during their recovery phase, not while actively in treatment. It takes lots of hard work and dedication! In addition to the therabyte there is another similar device called a dynasplint. There are also good old tongue depressors. I have seen a physical therapist who helped me with these. Take stacks of them and put them on each side of your mouth. Start out by putting about 5 on each side. Then slide one between the tongue depressors on each side until you are stretching your mouth open. When you feel you hit your limit, hold it for about 10 seconds and try to put one more in the stack. Hold it for 30 seconds and then gradually take them out. Repeat at least 3 more times per day. After what your father has already gone thru there could be scar tissue involved which makes it even more difficult to increase his mouth opening. Of course like with anything, check this with your doc prior to starting. Your father may not be a candidate for any of the above tools due to his recent surgery.

How about a waterpik? If your father doesnt have one first ask the doc if its ok. Mix warm water and a little nonalcohol mouth wash together or ask the doc for prescription cholorhexine (not sure of spelling but this is close) instead of the mouthwash. Using a waterpik on its lowest setting will help to clean his mouth where he probably cant get with a toothbrush or floss. Your father should rinse his mouth several times per day with a mixture of 1 cup warm water,1 tsp baking soda and 1 tsp salt. The salt might burn his sensitive mouth so he may need to cut it to 1/2 tsp or omit it. Try to keep some salt in as it helps with healing.

The last week of rads is definitely the hardest and the first 2-3 weeks after finishing unfortunately for most, are even worse as the radiation continues working even after finishing treatments. The recovery phase is usually starts about 3 weeks post rads and for most its a slow go with ups and downs. The sense of taste will take at least a month before slowly returning. Patients can expect things to taste different than they expect for quite some time. Many report improvements in their sense of taste thru about the 2 year post rads mark. The body takes considerable time to bounce back after what your father has been thru. After a few months your father will feel much better, probably not back to his original self but significantly better then he feels now.

The tabs below should help you with your father. Best wishes with everything!

Main OCF site--- Trismus

Main OCF stie--- Understanding Oral Cancer

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Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: Scheduled for marginal mandibulectomy & radiation [Re: Vithal] #200453
10-03-2020 12:21 AM
10-03-2020 12:21 AM
Joined: Dec 2013
Posts: 7
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Vithal Offline OP
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Vithal  Offline OP
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Joined: Dec 2013
Posts: 7
Dear All,

After being relatively ok for the last 4yrs, oral cancer has metastasized for my father. It is now found in temporal lobe as well as in lymph node below joaw on the opposite side of where the SCC was first diagnosed. He is 73 now and considering the complications, we have chosen to go in for palliative care. Over the last one year, his lymph node on neck has enlarged to over 10cms and he has severe headaches almost daily. We have been trying to manage his pain by ace lofenac 200mg, however, considering the severity planning to start him on morphine.

Would be greatful to the group if any of you have had experience as a caregiver on what ccould we expect next? Would the cancer have higher probability of spread to his lungs/liver or to his head..and how do we deal with his pain management.

Re: Scheduled for marginal mandibulectomy & radiation [Re: Vithal] #200456
10-03-2020 07:58 AM
10-03-2020 07:58 AM
Joined: Oct 2012
Posts: 1,226
Toronto, Canada
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gmcraft Offline
Assistant Admin
gmcraft  Offline
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Patient Advocate (1000+ posts)
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Joined: Oct 2012
Posts: 1,226
Toronto, Canada
I’m sorry your father is in palliative care. It must be difficult for you. My husband was given hydromorphone which is ten times more powerful than morphine when he ended up in hospital with pneumonia. However, he did not react well to that at all and had all kinds of hallucinations. Eventually when he was given palliative care at home, the doctor decided to give him a little bit of codeine (it worked out to 1/8 of a teaspoon) several times a day. It worked well for him.

At that point, I had a discussion with my therapist about what I could expect in terms of his passing and the doctor told me that most cancer patients succumb to pneumonia, which, turned out to be what happened. You did not mention if there’s any bleeding in your father, so I’ll mention this just in case. I have read on this forum that it would help to have dark color towels if there’s bleeding in the patient. It would help caregivers to deal with the visual shock of seeing a lot of blood.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.

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