Hey everyone, hope all is well and enjoying life to the max!
I'm Ida, glad that my partner recommended me to this forum, its very informative and useful.

Just to share my previous and recent stories, last year I was having a severe painful tongue on right side and then i went to ENT. The oncosurgery did a biopsy and from there it all started...

I was diagnosed with TC last year stage 1 and have gone through IMRT 35 times. CT scan on Nov2011 and oncologist confirmed that im a cancer free that time.

Last week im having a pain at the same spot, not sure what it is something is wrong with the nerve. When i examine, feel theres a bump at the same spot base tongue.. the pain is not that harsh but im really curious and i was freaked out.. the white patches came back. Theres a thin line spotted again!

So i met my oncologist. He advised me to perform CT scan next month and to do Chemotheraphy 6 shots. EIther the results is negative or positive its a procedure to make sure the cancer wont come back..im not actually confident about that.

Then yesterday i met my Oncosurgery. The thin line is actually candida and has been removed. He did biopsy to my new lump at my tongue just to check whats going on and what the heck is it.

*fyi, i have 2 doctors (1 is oncologist from Cancer hospital and another 1 is ENT oncosurgery who diagnosed me and manage my pain, we become close friend already). Both of them knows each other.

Now im waiting for the biopsy results now but i am prepared for the worst. Im nervous.
Wish me luck.

Ida

good luck.

It sounds like you have faith in your docs and they are very proactive. It also sounds like you are in good spirits which goes a long way towards recovery.

The idea of doing chemotherapy after the IMRT sounds a little unconventional to me but I am not a doctor. The one thing I suggest though, is wait for the biopsy to make any final decision about chemo. Chemo is no picnic, and I would hate to think you underwent such treatment if the lump you have found was just scar tissue.

My Alex also had treatment a bit outside the standard treatment and it has worked very well which just goes to show that everyone is different and it is good to question the doctors to understand their reasoning, but dangerous to try and second guess them.

Karen
PS No doubt DavidCPA will be around soon to tell you to get the original lump (the cancerous one) tested for HPV (Human Papilloma Virus) You had a base of tongue (BOT) tumour, are very young, and don't smoke (and I assume your don't chew tobacco or betel nut or similar), so this might mean you have a tumour that responds well to treatment and has a better prognosis than some other cancers

Hi Ida , can you clarify? It sounds to me like you have oral tongue cancer (had) but the use of base of tongue is confusing as this is not visible to the human eye, do you mean under your tongue or down your throat. I too would question the chemo because on this type of cancer chemo is normally used in conjunction with radiation, to enhance the radiation. Take care and try not to worry...

This is the person I am giving CG to (Ida)... welcome dear! This place is full of information, warm people that makes u feel at ease..
Remember we are in this together and your not alone!..

Ida, welcome to OCF! Hope your biopsy turns out to be only scar tissue bothering you. I know its a scary time waiting for test results. Try to stay busy to keep your mind off the worries. You have been thru this once already, thats enough! Ive done it 3 times and sure hate to see anyone else go thru it at all. Please keep us posted! Best wishes!

Thanks Christine!.. I am happy that I found this group and it really makes me at ease.

How cool! patient and caregiver both on the forum! That is so great! Most of us are one half of a pair with either the caregiver or the patient being active on the forum whilst the "other half" relies on the first person to find and share the information. I thought my situation was relatively unusual as we are both here, but only one of us (me) "talks" whilst the other "lurks".

Welcome to both of you

Karen

Oh well not a good leap day at all for both of us...results came in as a recurrence!....I'm just too devastated right now...breaking down into pieces....

I'm soooo sorry. There really are no words we can say except we will pray for thorough tx and a great outcome. Keep us updated on what's happening.
Kevin has his first PET and Scope March 12th and 15th. He was diagnosed the first time at the same time as you.
Try to keep your positive attitude once the shock wears off.
Kathy

Oh Ida and Al - I'm so sorry to hear about the recurrence! I know you must be so devastated - but try to hang in there. At least the doctors did not waste any time recognizing the need for a biopsy and then getting it done. That makes it a lot easier to be able to do something about it and start fighting. Have the doctors said anything about recommended steps to take? Lots of people here have had recurrences and I'm sure they will be along to share with you some of their own experiences for a good outcome.

Im VERY sorry you have joined the recurrence club!!! Please try not to panic. I know its shocking when you get the news, its so much worse to hear you have cancer again. You are not alone in this. Just remember this time around you are smarter, you know all the medical terminology. You have OCF to help you. Ive gone thru it 3 times so I understand what you are dealing with. Please come here often and let us help get you thru this.

Ida... did they not operate on you at all? Usually with oral cancer of the tongue (you can see it and feel it on the oral tongue) your first line of defense is actually surgery... then radiation and chemo in tandem... did they operate to remove the tumor? Did you have clear margins on your biopsy? sorry I'm still unsure as to where the actual tumor - recurrence is. The Base of tongue is actually in your throat and invisible to the human eye. It still sounds to me like it's your oral tongue if so it should be surgically excised. Then followed up with radiation and chemo... goood luck - so sorry about the recurrence... hugs.. you will get through this. take care.

We will be meeting the doctor today. Hoping to have straight mind to think and makes fast decision. Option left now I think is surgery and chemo. But lets see. I slept and woke up.. still not feeling good at all.. I guess we all been through that...I know Ida is stronger than me in terms of fighting it.. I am just feeling more devastated from the actual patient!.. Crazy huh.. but seriously I felt like can I go through it if its me? No way..

I will update more on the doctor's suggestions... its just crazy to have to go through it again... the ride is not just bumpy.. but hell crazy.. I wish where I lived have this kind of support group.. too bad..

I am trying to keep myself busy with work,but still breaking down into pieces.. its very hard to keep calm as CG, to show you are strong, tough...having to decide for things, keeping life moving (dealing with daily stuff etc)..

I'm sure everyone went through it especially the caregivers.

Wish me luck guys...

Ida,

Sorry to hear it's back. Tongue Cancer they usually do surgery first then Radiation if it's in the lymph nodes. No ND?

Thinking of you take care.
Connie

Hi Connie, ND are cleared so far, thats the reason we went through radiation first not surgery. Still cleared now I hope but only scans can proved it. So we are meeting the doctor tomorrow to discuss the options, only 2 left, surgery or chemo.. I think surgery would win, but how major it is, that's what we are waiting to hear. Still trying to cope with the news.

Al

Alz - ideally the correct treatment for oral tongue cancer is - removal of the tumor surgically - a neck dissection - then depending on tumor / size and or infiltration ( perineural involvement ) and differentiation - well, moderate, or poor - they decide on radiation, and chemo, or just radiation. They do it this way because first off - it is the best way of getting the cancer - cut it out with clear margin - then they use radiation to clean up any stray cells. Chemo is added to enhance radiation - it works systemically - however it kills stray cells for the most part. Unless there are a combination of chemos used - sometimes they'll do that first if it's a high stage cancer and a large tumor. It weakens the cancer / tumor, possibly shrinks it, then they remove it surgically.

Anyway - this is all would haves and should haves - what's done is done. They need to remove the tumor surgically, and likely do a neck dissection. The decide on possibly another round of radiation and possible chemo. (this is for a visible cancer on the tongue) if it is base of tongue - which it doesn't sound like it is - then radiation and chemo are usually the first choice. Regardless good luck.... And I'm sending prayers your way.

Chemotherapy is on the way folks... please do share what should we do pre chemo (food,mental health etc) and after the first chemo shot --just to stay afloat...

we managed to fight 35x IMRT - stay positive, pain management , food intake to make sure you are not under nutrient.

I frankly dont know what to expect for this chemotherapy sessions, I know hair will be lost, but the doctor keep assuring there will be support systems like medication to control nausea, blood count, etc...

Hoping for some feedback.

Really appreciate it guys...

Al

Hi Al - Until someone else shares some more direct experience with you, you might go to the OCF main page and click in the search box (upper right), put "Chemo" for several links on what it does and its effects on the body. A search for "nausea meds" can also give you an idea the different ones that are available. This could help you to think of some questions for the doctor or for anyone here. Re the nausea, whatever the doctor suggests, be sure and ask about what side effects of the meds are possible and what to do about them so that you can be prepared. My son did not have chemo with his Rad Tx but he did have nausea and some hair loss but the hair all grew back. With the help of everyone here, he made it through just fine and there is every chance that Ida and you will too. Try to stay positive and keep checking back here and let us know what's happening.

ALZ what kind of chemo??? Is it only 1 type???? CHEMO on its own generally DOES NOT KILL TONGUE CANCER!!!!!! Sorry I'm worried - really the tumor should be removed surgically. even if your dr. Chose to go with radiation first - the second line of defense if you face a recurrence is salvage surgery. Check the Nccn guidelines - they will tell you standard treatment. I know of only two people who've had chemo used to treat tongue cancer and I believe the initial chemo was for three months to shrink the tumor and it was a combination of three chemos - then they went through radiation and chemo. . But that was a first time out situation not a recurrence. Please i think you should get a second opinion. Surgery should have been your first treatment. Good luck!

Yep, I did said those to the oncologist, and he insists, this Monday we are getting another opinion from surgeon, and another opinion from another oncologist(quite well known who suddenly inbox my girl asking if he could help her since she added him on facebook and he saw that we were venting about her recurrence... miracle..)...

will update more, just want to have a quiet weekend... thinking of taking my girl for a getaway next week...loosen up abit ... and just deal with the stress management, its been hell since past 2-3 weeks...

Chemo is not given in a shot form. Its given slowly, over several hours with meds given before and after to help make it easier to tolerate. Hair is not always lost. I didnt lose mine. Cheryl is correct....chemo alone will NOT[b][/b] cure her.

Here is a link to info about treatments. Please check out the main OCF pages, there is an incredible amount of important info there. Please take the time to go thru this. It could make a huge difference in how she is treated. You both must become advocates for her!
Main OCF pages, TREATMENTS

Good luck with the second opinion Alz! and do something nice for yourself and her - I actually does help your mind set to get away a bit.

Also I must apologize I offended one of our members when you posted originally about your dr. Suggesting chemo without confirmation of a recurrence. I agreed and thought he was being proactive. I was basing this on the assumption that the dr. Suspected very heavily that it was a recurrence and that his suggestion of a round of chemo was meant to possibly be prophylactic in nature. By no means do I believe chemo I harmless - it does have many side effects that are unpleasant, can cause severe reactions in people, and doesn't cure tongue cancer - so I believe a dr generally wouldn't suggest it without believing I has some actual purpose (though admittedly some drs do questionable stuff) . So to anyone new reading this - it was an opinion only, and based solely on this particular case - everyone is different and most importantly a good medical professional with experience in this type of cancer generally knows best. If you have any concerns a second opinion from another qualified dr shoud be obtained. We all come with our own valuable set of experiences and can give advice and suggestions on what to ask or where to educatie yourself about this disease - so that you are informed and can advocate for yourself but realistically - we are a forum here to help but not here to offer advice as medical professionals. (though some do a background in medicine) anyway sorry if I lead anyone astray - Alz best of luck to you.

Hi Alz and Ida,

Good idea to get away and get your thoughts together.

I can possibly help with what to expect from chemotherapy. Alex and I went through 4 cycles of chemotherapy in 2010. However, different drugs and drug combinations have different effects and whilst most of them cause nausea and vomiting, there are different things you will need to do depending on the drugs they give you. Until we know exactly which drugs are planned for Ida we can't really give you any specific assistance.

When you get to your next appointment (or maybe phone or email your oncologist), ask the doctors to write down the names of the drugs and then you can post them here.

There isn't a lot you can do to prepare anyway, other than to keep the weight up, eat favourite things now because chemo may take away the appetite and make some things taste wrong.

Alex was terrified on his first day of chemo (as was I - even though I knew the procedures and how it all worked). Because Alex had 3 chemo drugs, one of which needed stacks of fluid with it, the infusions ran for hours so he was given a bed and had an overnight stay. When I went to pick him up the next morning, he announced he felt "like a box of birds" and looked as good as I had seen him in months. The fear and stress of not knowing what was going to happen had left him, and the knowledge that we were finally doing something to fight made him feel very positive. The nurses also fed a lot of fluids into him via the drip which also would have made him feel better .

We found that week one of the cycle was ok (although nausea sometimes happened during this time), week 2 was feeling exhausted and weak and week 3 was a daily recovery to feeling human again. Then it started all over again... This may be different in your case though and is dependent on the drugs and doses they give you as well as how far apart the cyles are. I think I read somewhere that you think your cycles may be 4 weeks apart?

Remember too that Alex was having chemo as his very first therapy as a newly diagnosed patient. Your treatment may end up being completely different from Alex's

Anyway, keep us posted and we will support you whatever happens with whatever you need

Karen

Hello all.. I know I have 2 postings .. actually this belongs to Ida and she's taking a break from staring the screen (although we are both net freaks since we are 16 .. that's how we met ).. online couples!..

Our 2nd opinion gives us much much more clearer picture... on how we should go ahead with this. IT is still can be cured... with localized tumor of 1.9cm and scans are cleared for nodes.

Lets see what new surgeon will tell us. Sometimes its not good when the surgeon (the first one we had) became closed people to us. I think it made him difficult to cut us? I don;t know.. what I know is we need to act fast while it is small..

I love you guys all.. seriously not kidding...

HUGGGGGGGSS!!!!

Im happy to hear that the recurrence has been caught while its in the early stages. Hopefully it will be a quick surgery with not much tissue removed. Then she can recover and move on. Best wishes with everything!

Glad you got that second opinion! Things should get a whole lot better for Ida and you from now on!

We definitely get bonded on here, that's for sure!! Glad for the second opinion. Will watch for the continuing story!
Kathy

Terrific on the second opinion! Act quickly. Mine was a little smaller but so far I am doing fine since treatment. Take care and good luck.

Hey guys.. met the surgeon today and he will accept our case!.. Good thing was he is a double doctor kinda thing, head and neck cancer surgeon,plastic surgeon and dentist as well.. how lucky...

So we did teeth X Ray today to plan the surgery. Since she had radiation, doctor will do via neck instead the jaw bone. So we will see what will happened.

Ida is scheduled for a PET Scan tomorrow just to make sure it hasn't spread although her MRI scans showed that there's no nodes involved.

Wish us luck and I will update as we go on this bumpy ride.. !

Hugs!

AL

That's great so glad to hear you found someone good. Good luck with everything.

Good luck to you both!! So glad things are moving right along.
Keep in touch!!

Hello! Just done with PET scan this morning and now im waiting for the result. Going to meet the oncology and get him to write some official letter to my previous doctors. I changed my mind. I choose not to go for chemo. Actually i did signed an agreement letter sayin that i agreed to do chemo but now am cancelling it. Hope the hosp wont sue me or take any action.

Im full with radiation now. Glad they didnt transform me into incredible hulk ; ) The nurses asked me not to be near with small kids or even adult for 24 hours. At least 1 meter gap. Is that true? Have anybody experienced with PET CT?

Yeah I am staying away at least 1m gap right now...and please do not turn into HULK!.. Bionic Woman sounds nicer don't u think? Glad that Ida courage back here he he...

So guys.. her tumor is located abit behind the tongue but didn't cross mid line yet.. doctor was thinking about neck dissection rather than jaw split due to radiation she received...

My question would be, how normal is normal u can be after the surgery...Its something we never know about before...no one we know in our life went through major surgery...

Glad to see the updates from both of you! About staying 1 meter away from small kids or adults, I've never heard of that. No one ever suggested that to my son during his Rad Tx - maybe someone else will have more info on this. Re being "normal" after surgery, I think it would depend on the type of surgery. My son had 48 lymph nodes removed and when I first saw him right after surgery in the Recovery room, just beginning to wake up it was hard to see him looking so vulnerable, but the nurses were right there checking on him and making sure everything was going ok. It really helped to have my daughter and nurse-friend with me. Be sure and ask all the questions you can think of (make a list) with the doctors beforehand. Being prepared makes things go a lot easier and helps you feel better about what's happening.

I'm beginning to wonder what kind of radiation Ida had?!!!! Did they do it with a mask and machine or was it seed implants or injections??? (totally the wrong treatment for his kind of cancer!!!!! if its the injections and/or seeds) that's generally used for thyroid cncer which is a low grade cancer!!! And the protocol is to stay away from others for a certain amount of time because you are actually radioactive!!! Ida - Alz please clarify? What kind of radiation did you have? Describe the procedure.., (if it is the seeds or injections then no wonder it didn't get the tumor!) ps don worry abou being sued no on can fore you to have a treatmnt you don't want.

Thanks!

It was after the PET. They told us the same thing. They said no cuddling with kids or older people.

Taking a day break today.. After 4 days in a row in and out to the hospitals seeking opinions. Glad its really worth it.

Yep its the PET Radiation... but its over 24 hours now.. so its ok!!!..

We have consulted the surgeon and he really did explained quite well (with drawings and xray of the mouth). Now we just need to pray everything will go well and what we targeted can be achieved..

Ida is taking a break.. I still have to work ofcourse.. LOL..

Hey Cheryl,

Its just PET Scan she was saying about .. She had done with the mask IMRT last year.. so proceeding with surgery for this recurrence thing.. wish us luck!!!!

Oh sorry!!! Obviously I was half awake when I read the post. The don't do PETs here so perhaps that's why I've never heard of that. Though the cts do use radioactive contrast as well... I have heard that rule with with radiation implants and seeds etc... For thyroid cancer - thats why I freaked... Have a great day off!!!

No prob cheryl .. Its cancer off weekend for us now.. Taking her out for anything she want to do.. Buy bags..shoes..food.. Need her spirit up before surgery..

GO for it - enjoy!

Little update from us.. Ida is going for her surgery tomorrow morning... And i know i should b strong but lOoking at her today having pain after she had her PEG breaks my heart... We were up n down in hosp since yesterday doing tests etc for the twelve hour surgery tommorow morning... Im breaking down thinking how its going to change her.. But i want her to be better n cancer free.. I dont know guys.. This is so tough for me right now.. So tough n couldnt imagine if anything would go wrong during surgery.... I need ur support.. Im alone.. We doing this not in own country... N i hv no one here except her n shes now at the hosp n im just bck to my hotel room.. Need to clean up n rest.. But instead im breaking apart...... Help... Will life change.. Will she b happy again.. Oh god i need u now

She'll be okay - i've had a portion of my tongue removed, and was eating soft foods within 9 days (not sure why they pegged her... Usually that's reserved for radiation as its more long term ) - her healing period may take longer as she's had radiation only a short time ago. But I suppose they're being cautious. I'm assuming they're just removing a portion of their tongue and maybe doing a neck dissection - if that's the case - she may have some difficulty talking - and eating for bit but should recover ok - as long as she avoids infection, and doesn't have too much trouble healing.
Take care... She should be ok assuming her drs. are good etc...Give her a hug from me and tell her I'm saying a prayer for her.

I wish you all th every best with Ida's surgery. Please post an update for us when its over. I know its hard! Sometimes being the caregiver is harder than being the patient. Having to sit back and watch everything and still try to be strong can be a very difficult task. Some caregivers end up on anxiety meds to deal with all the stress.

When Ida finishes this surgery she may or may not look different. You will soon be tested as to how strong your bonds really are. Looks really dont mean very much. Sure to the outside world they do but its still Ida inside. Im speaking from experience on this. I am missing a big portion of my face, half my lower jaw. People may stare if she doesnt look the same. From what you described she should look pretty close to herself. You will never be able to change the fact that no matter what the outside shows its still your sweet Ida on the inside. Her voice could be a little different but its still her. If she requires additional reconstructive surgery to look better, it will be done a year from now. Her body needs to first recover fully. Swelling can take months to recede. Usually after the first month most of it will be gone.

Ida is very lucky to have you in her corner. Make sure you dont worry yourself so much. Please take care of you and try to stay very busy. Time can be an enemy making you worry about 'what if'. Keeping busy will help pass the time a little easier.

Best wishes to you both!

Quick updates.. The surgery took13 hours and post 7 hours due to her new tongue blood vessels was clot n it turned blue.. Was hell panic.. But shes recovering now! Bad thing was.. Bed sores developed due to long surgery hours..
Good thing.. Managed to take out all cancer with margin 3 cm! N 55 nodes.. None positive!!!!
Happyyy.. But recovery road is bumpy right nw.. What can ease down bed sores pain?? She took tramadol, panadol, xanax even.. None works.. The ointment we got is just to repair the bed sore not as pain mgmt.. N muscle relaxant is a no no by doc

Happy to hear Ida's surgery was a success! Sorry to hear about her pain. There are several different creams that will help with bedsores. They are very heavy, thick creams which should be patted on, not rubbed in. This will make a barrier between her skin and the sheet to help it heal. There are many pain meds, fentanyl is the strongest. There is morphine, oxycodone, lortab, etc. To prevent further sores she needs to be frequently repositioned.

Best wishes for a speedy recovery!

Glad to hear about Ida's update and that the surgery went so well. Hope Ida gets some relief soon from the bed sores and the pain. Stay in touch and let us know you you both are doing.

So glad she's doing well! Best thing for bed sores is getting up and moving around - dressings with the right meds with help them heal but seriously walking will help. Hugs and good luck

Alex had one bedsore on his tailbone and the nurses put plastic skin on it and changed it every 2 or 3 days. I also put an eggcrate mattress overlay on the bed at home and leapt up and down at the hospital until he got an airmattress or ripple bed (can't remember which one now).

Great news about the clear margins and negative nodes - sounds very promising indeed.

Re pain killers. Does the hospital have such a thing as a pain management team? They are great at putting cocktails together that work and are less fearful of the big guns (opiates) that others fear. I can't imagine that Panadol even in combination would be strong enough for your needs - Might it actually be Panadeine Forte?

Alex managed pain with a combination of fentanyl(worked his way up to 150mg patches), long acting oxycodone ?10mg(Oxycontin) and short acting oxycodone ?5mg (Endone) to manage pain after lung surgery as well as radiation and tumour pain. Whilst the cause of Alex's pain was different, I suspect the severity was similar to Ida's situation. Something to ask your doctors about as a starter anyway?

I'm so happy to hear of the successful surgery! best of luck with the healing process in all areas. Thank you for keeping us posted!;

Hey guys.. Updates from me.. Ida now back in Home ctry n starting her healing process here.. It was hell ride for the past two weeks with the lousy post surgery care in brunei.. Just imagine 5 days after surgery they stopped iv... No antibiotics n no painkillers.. She was crying everynite asking for shots!! N the doctor can say its a psychological pain???????? Wth??? Anyway we r bck to pur regular hospital n doctor here n hope the ride wont be as bumpy anymore

Oh, poor poor Ida! I have heard of this is in N Vietnam as well. A friend's aunty with stomach cancer. Interestingly, the doctors changed their opinion about her level of pain when they discovered that Aunty's family had lots of money, came from Australia and were prepared to pay for morphine. Morphine (which turned out to be dirt cheap) was supplied immediately, to great effect. Aunty went from "at death's door" to being sent home.

But I digress ...

There is nothing like being home, where you know how to access the services and hopefully you are in your own bed at least.

My very best wishes for Ida's recovery and wishing you no more bumps in the road.

Just a question: Why did you go to Brunei for surgery?

Sorry to hear Ida is in so much pain. I cant imagine those doctors thinking she wouldnt need pain meds! Poor thing! Best wishes for a quick and pain free recovery!

What an awful experience for Ida having to go thru so much pain! I sure hope everything goes much better for her now that she's back in her regular hospital.

Hi there so glad she's back where she can recover with you and in relative comfort. Good luck! Saying prayers.

Updates from us. Ida now back home, out of hospital, going through physiotherapy 3 times per week. They cut some muscles on the neck making the shoulders dropped (damn)...

But she is managing it well .. with the help of physio and pain management is much more better.

And getting used to the new 60% of new tongue...

I am taking her out of country next week... Just to get fresh mountain air.. and fix our screwed mind over this horrifying experience..

I missed you all.. and if I did not say it, Thank you all for the support during my darkest time in my life where my love of life cant even speak... I have no one to talk or know how I really felt. I poured it here, and the support I got really touched me. It means a lot. Virtual bear hugs to each and everyone.. Love you guys!

So glad to see your update! Glad Ida has come thru everything successfully. Hope she has a quick, painfree recovery!

Cool mountain air sounds like a wonderful plan - hope that you both enjoy every minute. Virtual hugs and best wishes!

Have been wondering how things were. Thanks for the update. Enjoy your time away. I get chills when I read how much you love your Ida!! You are a wonderful caregiver!! That is such a blessing.
Kathy

How wonderful to hear from you and to know how well Ida is doing! Enjoy your time together and thanks for the great update!

So glad he's getting better! It's a slow process but you will get there!! take care and enjoy your time away.

Hey Guys

We are back!.. Had a great time away from everything. Maybe need to do that often from now on.
As for recovery , it is still tough but slowly getting better. What I dont like was the cruel doctor keep on calling my Ida and this is stressing her out, we are back to our original surgeon (who diagnosed Ida at first place) and got great post care at the hospital. We stopped contacting the surgeon who performed the surgery since the post care was so lousy and the surgery he did was OK, not to say its great (a lot of things he did wasnt modern enough and few things he did impacted day to day life - something he took out from the back of the tongue which causes water to flow directly from your throat to nose out, shoulders dropping due to muscle removal which shouldnt happen).

So we want to ignore him now and just focus on our regular head and neck surgeon. But this guy just keep on calling.. asking his secretary to call non stop -- causes stress..
I think we are the boss of whom we chose right? We chose our own doctors.....

Oh well.. I will straight this thing up... I dont want Ida to stress as stress is one of the major things cancer patient needs to avoid.

I missed you all.. hope u guys are doing great... Big Bear Hugs from me

Love
AL

Hi there it's the drs responsibility to see you're ok that's why he keeps calling. . The shoulder drop is actually likely to happen - particularly with the type of surgery - whoever told you no wasnt being honest with you. It may also have nothing to do with the surgeons skill but rather Ithe disease etc... had problems with mine after having 40 nodes removed. 55 would have more impact (more cutting more damage) but its better than being dead. physiotherapy will help strengthen and repair some of the damage. You need to find a good dr you trust and stick with him or her - continuity of care is very important - that way he gets to know you too. Not to say you shouldn't have a second opinion when you think something's up, but sometimes we get bad news or fall out from a procedure or treatment and change drs because we don't like it when it's not really something the dr has control over...

So glad you're back!