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Paratoid gland remove l and complete dissection
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Paratoid gland remove l and complete dissection

› Forums › General Melanoma Community › Paratoid gland remove l and complete dissection

  • Post
    • May 25, 2018 at 2:44 pm
    Suebette4467
    Participant

      Hello I am new. Diagnosed on April 2,2018. Had surgery April 24,2018. Now being told to have paratoid gland removed and Complete lymph node dissection. And then immunotherapy. I am scared and just wanted to know someone who has gone there same! Thanks

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    • Replies
        • May 25, 2018 at 9:19 pm
        BillB
        Participant

          Hi Sue, we really need a little more information regarding the tumor such as location, depth, ulceration, mitotic rate, BRAF status etc. I might want to start with a SNLB based on the tumors characteristics before I jump right in and take the parotid gland,  although in my case I ended up having the parotid and a CLND of the neck, just 7 months later. If your PET scan doesn’t show any activity maybe you can just start with opdivo or Keytruda.

          also, it’s extremely important to be treated by a melanoma specialist, really important. I looked up your surgeon and he is probably extremely competent, but his specialty is breast cancer. Hopefully the others here that are extremely knowledgeable will jump in and give you some great guidance. I’m not real wordy and hate to type so after you digest the information you are welcome to call me and I can tell you how my parotidectomy and CLND went along with radiation to try and prevent local recurrence. 

          Im sure you will get a lot more assistance after you provide some additional information.

          Good luck,

          Bill

            • May 26, 2018 at 6:05 am
            BillB
            Participant

              Hi Sue, I miss spoke, your oncologist is a melanoma specialist, missed that in the profile. The surgeon was who I was referring too. I had the three parotid lymph nodes and the gland removed, along with 35 nodes in my neck. The surgery was  a little over 5 hours long. I had the surgery on Saturday and went home on Monday morning. The drain was removed from my neck on Monday before I was discharged. It took around 7-8 months for the drainage in my neck to completely heal and then the fluid build up disappeared. Don’t know if that was all related to the surgery or the 20 radiation fractions (48 gray) that I received beginning 1 month after the surgery (probably a little of both).  The area where the parotid gland was and my ear are still sensitive because there is a nerve that is cut and can’t be repaired. It took 4-5 months before I could whistle, and about the same amount of time for me to have a complete smile on the right side of my mouth, but everything did heal. I can say with complete confidence the worst part of the surgery was when the nurse pulled the drainage tube from my neck, other than that everything went smoothly.

              Good luck

              Bill

              • May 27, 2018 at 5:52 am
              Suebette4467
              Participant

                Thank you Bill . It's just nice to hear someone that has gone through the same. Did you have WE and SNL?

                • May 28, 2018 at 3:27 am
                BillB
                Participant

                  Hi Susan, I did have wle, then second wle because of some residual in situ along one border. Didn’t have snlb because surgeon felt drainage was probably changed from original surgery and he wouldn’t have any certainty the  identified lymph node was the original snl.  I’m guessing the three parotid lymph nodes that were finally removed (w/melanoma) were probably in the original drainage path.

                  The only other side effect I have regards completely opening my jaw. It’s probably a combination of the CLNB and the radiation effect on the tendons. Doesn’t cause me any problems, just can’t open real wide. Difficult to eat an apple. 

                  Bill

                • May 26, 2018 at 12:25 am
                KellyH
                Participant

                  Hi Sue!!!  My son was diagnosed in February from a 2.4mm mole removed on his scalp. After a wide lesion excision and a positive sentinel node biopsy he did have his parotid gland removed and a left neck dissection.  He is 17 years old and has healed really well…9 days later he was back playing baseball…granted he’s a teenager…but overall the surgery was not as bad as we thought…I was petrified…but he has no facial weakness…no nerve damage at all.  His biopsy from surgery, parotid gland and 49 lymph nodes all negative for melanoma…that made him Stage 3a….he will be starting immunotherapy next week…Opdivo, one infusion every 2 weeks for a year as adjuvant therapy…It’s a whole process and it’s not easy and it’s very scary….ask lots of questions, do research, be an educated patient…there more you know the better you will feel about each step and what comes next…and try to .just take one day at a time. 

                    • May 26, 2018 at 3:52 am
                    Suebette4467
                    Participant

                      In am distributed your son and hesc17. His story is my story. Please keep me posted on O pdivo. Thanks

                      • May 26, 2018 at 3:54 am
                      Suebette4467
                      Participant

                        Sorry Kelly I meant I am sorry it's your son. How long did surgery take? Thanks Good Luck and keep mecposted.

                        • May 26, 2018 at 11:59 am
                        KellyH
                        Participant

                          Hi Sue. My son’s surgery took 4 1/2 hours on a Friday morning. He stayed overnight in the hospital. He should have stayed a few more days but because I was willing to take him home with a drain in place  we were discharged by the surgeon. We went back to the surgeon on Monday morning, they removed the drain and like I said he has done amazing in his recovery.  No facial weakness, no nerve damage…he does say his ear feels “weird” but that’s easy enough to live with. The surgeon told us it is usually a 4 week recovery period for most but like I said 9 days later my son was back playing baseball with his high school team.  Youth is on his side there. We were extremely lucky to have all the pathology reports from surgery come back negative for melanoma…the surgery probably was not necessary but you have no way of knowing unfortunately  until the biopsies come back.  But at least now he is properly staged and can be treated accordingly.  The PA in our oncology office spoke to a melanoma specialist in Boston, who has more experience with pediatric melanoma. We will be going on a little trip soon to meet with him as well to review his case because I definitely feel the more eyes on my son the better!!!!  Good luck and definitely keep us posted as well!!! Kelly 🙂 

                        • May 26, 2018 at 12:26 am
                        KellyH
                        Participant

                          Hi Sue!!!  My son was diagnosed in February from a 2.4mm mole removed on his scalp. After a wide lesion excision and a positive sentinel node biopsy he did have his parotid gland removed and a left neck dissection.  He is 17 years old and has healed really well…9 days later he was back playing baseball…granted he’s a teenager…but overall the surgery was not as bad as we thought…I was petrified…but he has no facial weakness…no nerve damage at all.  His biopsy from surgery, parotid gland and 49 lymph nodes all negative for melanoma…that made him Stage 3a….he will be starting immunotherapy next week…Opdivo, one infusion every 2 weeks for a year as adjuvant therapy…It’s a whole process and it’s not easy and it’s very scary….ask lots of questions, do research, be an educated patient…there more you know the better you will feel about each step and what comes next…and try to .just take one day at a time.  Kelly 🙂

                          • May 26, 2018 at 4:00 am
                          MovingOn
                          Participant

                            I would also recommend getting a 2nd opinion from another Oncologist/Melanoma Specialist. I had my parotid removed on 3/20/2018. At this point I have lower lip paralysis but I’m hoping it is getting better (now it feels like I’ve been hit in the lip rather than numb and so I think the nerve is healing). If you get a 2nd opinion from another surgeon they will most likely recommend surgery, but if the 2nd opinion is from a Melanomka Specialist (Oncologist) then they may recommend a different approach.

                            Try to get more details as well. For example, the Parotid has 3 lymph nodes in it. Do they feel the lymph nodes may have Melanoma (that was my case) or is melanoma in the tissue of the parotid. Will the surgery be a superficial parotidectomy or ‘deep lobe’. If it’s going to be ‘deep lobe’ then you will have resulting nerve issues but hopefully only temporary. The neck dissection is more significant of a surgery (my neck dissection was 14 months ago and I spent 3 nights in the hospital followed by 6 weeks out of work, whereas my parotidectomy was an outpatient procedure and except for nerve damage I was fully functional within 5 days). 

                            Best of luck and I hope you never again have a pathology report positive for Melanoma.

                              • May 27, 2018 at 11:24 pm
                              Suebette4467
                              Participant

                                Thank you for your story. I will diffently ask those question on 31st . I first had a choice of surgery or immunotherapy. But got a call from head UNC melanoma surgeon that I needed both. I had my WE and SLNB on April 24 . I was misdiagnosed last year when mole removed on neck was never biopsy. So we will see , it's all so unreal and scary. But again Thank you and Nocancer for you I pray,,,,

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