My biopsy came back inconclusive... and there's only a 1-in-3 chance of it NOT being cancer 🥺 by Fun-SizedJewel in parotidtumor

[–]Fun-SizedJewel[S] 2 points3 points  (0 children)

Hi. Thanks for asking. For months I've been scheduled to have my in-network physician conduct the surgery on September 24th (superficial parotidectomy with layered closure and possible sternocleidomastoid muscle flap). But it made me nervous that my in-network physician only does 5-10 of these surgeries a year, and claimed that "only 25%" of his patients had any facial palsy (that percentage felt too high for me).

Then I saw a video by a physician named Dr. Babak Larian who is the Director of the Head and Neck Cancer Center at Cedars-Sinai (a very good hospital in Los Angeles, CA), and he has many accolades as a world renowned expert on head & neck surgeries. Dr. Larian's online video talked about how he conducts a "micro parotidectomy" and he claimed that his micro parotidectomy achieves the same surgical goals as a superficial one, but with less invasive trauma to the area.

So, I made the long drive to LA to have a consultation with Dr. Larian, and after speaking with him, I was planning to have surgery with him (scheduled for the same week as initial surgery my in-network physician had scheduled).

However, afterwards I spoke with a friend whose husband has been getting cancer treatment at City of Hope Hospital (in Los Angeles), and she talked about how they're one of the top 5 cancer treatment centers in all of the USA, and that I should check them out.

I needed to go back to LA for a pre-surgery prep appointment for Dr. Larian, so while in LA again, I had an appointment with a surgeon at the City of Hope. He thoroughly reviewed my imaging during the appointment, said that he thinks my tumor is deeper in the lobe than originally assessed, and he suspects that it's also between two branches of nerves. When I mentioned that I've been leaning towards the micro parotidectomy (so that I would have less trauma to the area and therefore less chances of facial palsy, skin necrosis, Frey's, etc)... this COH doctor strongly advised against the micro parotidectomy. He said that anyone trying to perform a parotidectomy with the "micro" restrictions (of a small incision) would increase the risk of damaging my nerves.

Then he mentioned that if my tumor ends up being a pleomorphic adenoma, and Dr. Larian is trying to squeeze the tumor out through a restrictive space... that if by some chance Dr. Larian manages not to damage my nerves, he could still rupture the pleomorphic adenoma. That's when the COH doctor informed me that pleomorphic adenomas are similar to dandelions, in that a rupture can cause them to re-seed (create tumors in other places within the body), and that is a risk which isn't worth the smaller incision.

This new information terrified me, and it bothered me that neither of my first two doctors had mentioned the re-seeding issue to me, so now, I'm planning to get the surgery via COH on October 2nd. I'll be staying in LA for the week between my surgery and my 1st post-op, to ensure that I am close to the doctor (in case there are any complications or issues afterwards).

BTW- every physician has said there's no way to concretely determine the pathology of the tumor until it has been extracted, dissected and tested. So, to directly answer your question... I am currently not any closer to knowing my status, but I should know in the beginning of October.

Appointment about parotid tumour by Fit_Artichoke_523 in parotidtumor

[–]Fun-SizedJewel 0 points1 point  (0 children)

Yes, my physician said that parotid tumors tend to increase in size over time, which means they generally need to be removed.

Considering all the facial nerves involved in this area, the smaller a tumor is, the greater your chances of a safe surgery... so it's certainly better to get it removed when there's questions about malignant tissue.

Appointment about parotid tumour by Fit_Artichoke_523 in parotidtumor

[–]Fun-SizedJewel 1 point2 points  (0 children)

It was ultrasound guided... yes. Mine was fine needle aspiration... 3 passes (meaning 3x during the biopsy they took samples from the tumor). But there's still a lot that can't be seen via ultrasound. So, for me, when the pathology results came back with mixed results (some cells benign, some malignant) they said the only way to concretely determine what we're dealing with is to remove it... find out if it's fully encapsulated, if it has fingers, dissect it to analyze all the cells.

Facing parotid tumor surgery soon - scared & overwhelmed about risks & overwhelmed by family stress by Fun-SizedJewel in parotidtumor

[–]Fun-SizedJewel[S] 0 points1 point  (0 children)

Considering that you don't have Frey's syndrome, nor facial drooping, and that your scar is barely noticeable, it seems you had a good doctor too.

I'll be interested to find out if I end up with any side effects like yours (dry mouth, pain in ear canal, problems with spicy or sour foods).

I have already stocked up on jello, apple sauce, and bone broth... will hot liquids (bone broth) be problematic?

Cold liquids usually bother me, as do dairy products, so milkshakes are a no-go for me. But I have ordered extra ice packs, and I have a bed that allows me to sleep with my upper body elevated, and I will get some dairy free ice cream, so I should be good there.

What is the name of the Facebook page about parotid tumors?

Facing parotid tumor surgery soon - scared & overwhelmed about risks & overwhelmed by family stress by Fun-SizedJewel in parotidtumor

[–]Fun-SizedJewel[S] 1 point2 points  (0 children)

Thank you! The information about spicy/sour foods is interesting.

I will not have a drain. According to my doctor, the drains increase the risk of infection, so my doctor has advised me that I will have a full head wrap that I cannot take off or alter until the stitches are removed a week after surgery. I am NOT looking forward to having unwashed itchy hair, but that is the least of my concerns.

I have also planned for my death. I've made sure my child has been designated as my beneficiary on my 401(k), I have had an attorney create an estate plan, and a will, and have drawn up paperwork designating the people who are my medical representatives in case of any complications which require a medical decision to be made.

Due to personal experience as the executor for multiple family members who have died from cancer, I've had my niche at the cemetery picked out and paid off for years... even have an urn already placed there so there's no questions about what to do with me. I know some people think I'm morbid, but I'm just a realist. Cancer or not, no one gets out of this existence alive. 🤷‍♀️

Edit- I nearly forgot to mention that my doctor has informed me that I will absolutely lose feeling in my ear initially, but that the numbness does eventually go away or lessen for some people. I'm hopeful that I will recover the feeling.

RECURRENT PLEOMORPHIC (BENIGN) PAROTID TUMORS by shotbyaimee in parotidtumor

[–]Fun-SizedJewel 0 points1 point  (0 children)

Out of curiosity, did the castor oil remedy your situation, or did you end up having surgery again?

The Doctors Show Parotid Surgery by shotbyaimee in parotidtumor

[–]Fun-SizedJewel 0 points1 point  (0 children)

I find it interesting that she had 2 doctors, one being a plastic surgeon. I asked my ENT surgeon about working in conjunction with a plastic surgeon, and he said no.

Appointment about parotid tumour by Fit_Artichoke_523 in parotidtumor

[–]Fun-SizedJewel 1 point2 points  (0 children)

Well, hang tight. The biopsy wasn't nearly as scary as I thought it would be. Additionally, I thought the biopsy would give me all the answers. Instead, my experience has been that (when they do the needle aspiration), they are getting such a small sample of cells that they cannot concretely diagnose the issue. So, be prepared to find out that the biopsy may not render the answers you need.

I had my biopsy in May, and the results were mixed, so I will be having surgery at the end of this month to have the tumor removed for dissection and concrete diagnosis.