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Sick and Petrified

Posted: Mar 26, 2010

Okay, so I've got a tumor in my parotid gland that needs to be excised. Radiologist leaned towards benign; surgeon leaned toward malignant, as the tumor has tripled in size over 6 months and now there is another nodule in my neck area.

My CEA is also elevated into the 4s; not a huge elevation, but elevated nonetheless. My H&H are also concentrated. Neither of these are reassuring.

My surgeon did say an elevated CEA is usually more associated with colon cancer than cancer in the parotid area and strongly advised I undergo a colonoscopy (even though I'm not in the age range when these usually start) as soon as the surgery for the parotid tumor is over.

Also, about 4 months ago, I had an odd bumpy/scaly patch on the biceps area of my right arm. Just a small area, oblong but roughly about quarter size. I only noticed it because it was painful under the rash, almost felt "bruised." This has progressed to the point where I can no longer zip/tie anything behind my back or fasten my bra from the back because ROM is limited and painful, so my husband has been doing those sorts of fastening tasks for me. Even straightening my hair has become problematic as I cannot lift my right arm into position to straighten it properly.

I can also be feeling okay and working away, when suddenly I feel dizzy and lightheaded and can feel my temperature shoot up to about 101 with no warning. Sometimes it resolves in an hour or so; other times, it won't break for 2-3 days despite my efforts to sweat to make it break.

Be honest with me, ladies. I know a bunch of you more outspoken, no-holds-barred woman are going to lay it out there for me, so this is one time I encourage you to NOT hold back.

In light of all of the above, should I be preparing myself for the malignant parotid tumor biopsy findings?

Also, how dreadful is a colonoscopy? Do they give you enough conscious sedation where you really don't care about them threading that camera up your bum? Is it painful afterward? Any odd residual effects afterwards, such as diarrhea?

I'm petrified about this entire situation but refuse to give in and let this slow me down or piddle on my life parade. But....

Be honest, please...All signs point to malignancy, don't they?

TIA for your brutal honesty, which I know will be forthcoming.

;

Hi Sickly, I just underwent a superficial parotidectomy (sm) - Just sayin ....

[ In Reply To ..]
on November 13, 2009, for the removal of a pleomorphic adenoma. Like you, I had a tumor to develop on my parotid and it doubled in size within 3 months easily. My ENT performed a fine needle aspirate prior to the surgery so we knew that there was a good possibility that it was not malignant (even with a FNA there is always the possibility that they have hit "normal" tissue and malignant tissue can still be present).

My surgery went great, it was done as an outpatient and he did leave a drain in. The description of the surgery that he gave me was more horrifying than the actual surgery itself. I am also one who likes to see everything (hubby says I should have been a doctor) so I pulled a video and watched the actual surgery, I would not recommend that to you though, lol.

I was out of work for 1 week completely and then went back to work for just a few hours a day for about another week. The only problem I had was about 2 weeks after the surgery I had fluid to recollect in the area and I had to go in sometimes 3 days a week to have this drained (this was after the drain had been pulled). This is an unfortunate possible complication from the surgery and my ENT said that it is actually something that they do not see that often, but of course I had to be the "rare" case, lol.

Now 4 months after the surgery and my scar looks absolutely fantastic, no one even sees it now. I have been very careful to follow my ENTs advice about wound care, using vitamin E oil daily on it and again, it looks great, I am really pleased with the outcome. The sensation in my ear and part of my face has not come back completely but he said that sometimes that can take up to a year, but it is not bothersome in any way.

I will follow up with him every 3 months for the first year because there is a miniscule possibility of it recurring but hopefully not.

While it was not 100% necessary that I have this removed, especially after the negative FNA, I felt a lot of relief after it was over, knowing definitely that it was not cancer.

Unfortunately I cannot tell you anything about a colonoscopy, haven't made it that far. :) I do hope what I have told you helps you and if you want, you can email me at any time.

Good luck to you!! My prayers will be with you.

TY SOOOOO Much! - SicklyMT

[ In Reply To ..]
Your description sounds exactly like the procedure I'm to have, even down to the drains being placed, the followup, etc. I'm so relieved to hear yours was rapidly growing as well; mine went from a few mm to 2.5 cm in 6 months and the surgeon emphasized that's all the more reason to not waste any time and skip the biopsy, go straight for removal (he said even on the off chance it was benign, it would still have to be removed so he recommended going straight for removal).

How long did it take you to get your path results after the procedure? Were the results known as soon as you were out of recovery and in your room, or does the path on this sort of thing take a couple of days?

I'm also a bit concerned as the surgeon says normally it's done as an outpatient but "in your case, I'm going to keep you overnight." When I asked why, he simply replied, "As a precaution." Which, of course, to me means "Because it's going to be malignant and we'll have you right there in the hospital to talk chemo and radiation."

How often did you apply the vitamin E oil? I've heard there are a few products on the market that truly do help decrease/fade scarring, so I'm researching that (to distract myself from the grim prognosis I'm prepared for). Also, how soon after the procedure were you able to start using the vitamin E oil?

Thanks so much for posting...I found your post greatly reassuring and it's nice to know I won't be a horribly disfigured, scarred up, cancerous mess when the procedure is done, lol!

I am so glad to have helped you some ... (sm) - Just Sayin ....

[ In Reply To ..]
I began using the vitamin E oil about a week after the surgery and I just use it after I shower every day, it is really easy to do, dab a little on the finger and just smooth it over the scar.

Trust me I know what you mean about the fear of being horribly disfigured or scarred up, because I was terrified that I was going to look like Frankenstein after it was over, had horrible dreams about it, but it is nowhere close to what I had imagined.

My surgeon too recommended immediate removal but he also wanted to do the FNA just to have an "idea" as to what we might be dealing with ahead of time. I do not really like FNAs because the possibility of them actually obtaining normal tissue when there is actual malignant tissue present is a strong possibility, but I followed his recommendations and we had already agreed that it was coming out anyway.

I was actually surprised by him wanting to do it as an outpatient because everywhere I had read stated that they normally keep you in the hospital for at least 48-72 hours. However, at the time that I had my surgery H1N1 was running wild in our community and he had concerns about my exposure to that after the surgery, plus quite honestly I do not believe that there were any hospital beds available. We had discussed ahead of time that if it did turn out to be cancer that when I returned to him for my first postop visit (3 days after the surgery) that he would refer me to an ENT Oncologist.

As far as the pathology, they did a frozen section immediately which revealed that it was negative and then I believe that it was a week later when we received the final pathology. I honestly cannot remember if it was on the first postop visit or the second, but it was very soon afterwards.

As far as the drain, it did not hurt when they pulled it, just stung for about 2 seconds but that was it. It was more of a nuisance in trying to figure out what to do with it but luckily the hospital sent me home with 3 gowns that had the pockets in the front so I could place the drain in it.

Again, I hope that this helps and if you have any other questions I will be happy to answer or support you in any way that I can!!

Gosh, another question, my parotid soulmate, lol! - SicklyMT

[ In Reply To ..]
May I ask how long you had to keep that unsighly bulky dressing on before it was allowed to be exposed and you could start treating it with the vitamin E oil? Gosh, I'm just so nervous about this and all the things that can go wrong. BTW, my surgeon too told me my ear would be numb and that feeling would slowly return over a 9- to 12-month period.

How long did it take you to feel comfortable enough to wear your headphones and go back to work? I'm pretty hearty, so I'm figuring maybe 5 days away from headphones and then I should be okay (as long as I don't drag the headphones across the incision site whilst taking them off or putting them on). I'm a total workaholic and get very biatchy when I can't work, lol! How long from procedure to transcription was it for you?

Gosh, I feel like I had a kindred soul on this. I had reservations about posting this on MTStars, then remembered when potential disaster is at hand, most of the posters on MTStars have no problem being sympathetic yet straightforward yet sympathetic.

I'm just forcing myself to be optimistic but in light of the elevated CEA, the tumor fevers, the secondary symptoms in my right biceps, the second nodule the surgeon detected...well, I never did like things sugar-coated, but I know these all tend to point to malignancy so I'm also preparing for the worst.

Thanks EVER so muc for sharing your experience. It really means a lot to me and there's so few people I've confided in about this that it feels great to show my fear on a message board; helps me to keep that "happy-go-lucky" facade going for my family.

LOL at the Frankenstein comment...Thank goddess my hair (I have an asymmetrical bob with one front side considerably longer than the other) covers the actual tumor which is very noticeable due to is size. Not that I'm that vain, but it dissuades people from asking, "What's THAT thing???" when I'm out in public.

I am so glad to be able to help you somewhat, I had posted (sm) - Just Sayin ....

[ In Reply To ..]
before I had my procedure hoping someone else had been through it and did not get any responses.

I had my surgery on a Thursday and I went back on Monday for them to remove the dressing and tube. Removal of the tube will depend on how much drainage you have. While I was very lucky in the beginning and I did not have very much drainage at all, after the tube was removed I swelled because of fluid and had to end up going into my ENTs office 3 and 4 days a week for him to drain it. This went on for about 3 weeks and finally my body began to absorb the fluid. Even today I can feel that there is still some fluid there but it is not anywhere as bad as it was. Again, he informed me that unfortunately this is something that sometimes happens and thankfully I was still extremely numb from the surgery so he was able to drain the fluid and it was not uncomfortable at all, nothing like the FNA.

I started back to work on "light duty" about a week after the surgery. It was not uncomfortable to wear the earphones but more of a "different" feeling because, of course, I was still completely numb on that side. Even today since the feeling has not returned to my ear completely it is a strange sensation to have them on but it is very tolerable. I returned to work full-time 2 weeks after the surgery and have not stopped since. Trust me you will not pull your earphones across the incision site, your body will not let you, lol.

I believe that I started using the vitamin E oil about a week after the surgery. Actually I think that I could have started using it earlier but it gave me the heebie jeebies to think about putting the oil on the incision and it still that fresh. Crazy, I know, lol.

I actually went to the grocery store with my husband the Monday after having my surgery on Thursday and after the drain had been removed. My hair is shoulder length but is styled away from my face and a woman with a child in the store made a very ugly comment about "people like me being in public with something like that." It hurt my feelings a great deal because I was so very aware of how I felt that I looked; however, the problem was her, not me and trust me I needed to get out and about. People always continue to amaze me and even with her nasty comment I continued to go out, if people like her did not like seeing it then I felt that they could just turn their head. :)

My blood work was normal, thankfully, but I did and do still have an enlarged lymph node that has developed on the other side of my neck. It is actually larger than the parotid tumor but we have decided to just watch it for the time being. I do not believe that I ever had any fevers but have had many other things going on that are completely unrelated to the tumor. One of my biggest battles at the moment is with my blood pressure, it will read at 60/40, I will feel absolutely horrible and then hours later it could be 150/120. No one has been able to figure that one out but I keep chugging along and definitely keep typing away.

Keep your head up and smiling, nothing is written in concrete even if you receive a terrible diagnosis!!

Hi there...Please check your email! - SicklyMT

[ In Reply To ..]
I had a few more questions and figured it would be easier to take them to email rather than discuss it here in the thread, so I decided to take you up on your offer, lol!

D-day = April 28th, and getting more nervous every hour.

Colonoscopy - Euro Sepsis

[ In Reply To ..]
A colonoscopy is not bad at all, although it has always been one of my biggest fears(my sister has Crohn's - I would rather die).

They use conscious sedation and afterwards you will not remember anything (at least I didn't). The only side effect I had was horrible gas that whole day and the next, so you may plan on staying home until that's over with.

All-in-all not bad but nothing I would look forward to (mainly just the idea of it).

I'm not sure about your parotid tumor but I will keep you in my prayers. Good luck!

Thank you, EuroSepsis! - SicklyMT

[ In Reply To ..]
I have all these horrible thoughts about the camera getting stuck in a part of my colon and tearing it or something along those lines, or, even worse, not being sedated enough and feeling it creeping up my colon, lol! Between fear of the colonoscopy and fear of the parotid tumor mass, I'm just a bloody basketcase. After a couple of nights of insomnia and random vomiting due to nerves, my primary physician mercifully called me a script for Xanax. I'm still obsessing and terrified, but at least now I'm not so consumed by fear that I'm actually actively seeking the bright and humorous side of my situation.

Thanks again for the reassurance.

A colonoscopy is not a big deal -sm -

[ In Reply To ..]
I had to have one when I was 40 due to rectal bleeding (they need to confirm it was only hemorrhoids obviously). I had conscious sedation, had no clue when it was being done, super groggy afterwards, my ride drove me home and I crawled into bed to sleep off the sedation for a couple hours while she watched my kids. No problems afterwards. The only part I absolutely hated was the prep, drank about a half gallon of that GoLytely crap....almost passed out from the stuff...no fun when DH is out of town and home with two young children. But the prep is a must for a good colonoscopy, sucks to do it but no point in going in for it if you are not cleaned out properly.

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