| Joined: Sep 2014 Posts: 2 Member | OP Member Joined: Sep 2014 Posts: 2 | Hi There,
I'm probably posting too soon since I have not had an official diagnosis yet. I had a suspicious spot on the side of my tongue and it was removed and sent out for biopsy yesterday. The oral surgeon also took out a wide margin so if it comes back positive as cancer he will have excised the whole thing. I won't get the results back for a week and I think this is going to be the longest week of my life.
I'm hoping that is will be nothing but the surgeon really didn't give me any other ideas of what it might be and only talked cancer. Of course at the end he told me to not loose any sleep over it. How do you do that exactly?
I'm surprised with the amount of pain from the surgery, I didn't think it would hurt this much.
Thanks for listening!
Dawn
Dawn Washington Excision/Biopsy 9/14/14
| | | | Joined: Sep 2014 Posts: 8 Member | Member Joined: Sep 2014 Posts: 8 | Hi Dawn and good luck on your biopsy!!
06 / 14 Started to feel a lump in the back of my throat 08/28/14 ENT discovered tumor 09/03/14 CT scan 09/11/14 removal of tumor 09/13/14 biopsy == cancer ?? stage 1 09/17/14 masked formed / waiting 09/25/14 Diagnosis = Nasopharyngeal Carcinoma stage 2 10/02/14 picc line to be inserted 09/31/14 meant with OS = 4 teeth to be removed B-4 radiation treatments 10/7/14 3 front teeth pulled and 1 back 10/10/14 flipper made,( I still have teeth ) sorta !! 10/20/14 started chemo and radiation 6 weeks of both
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | I'm sure hoping it's nothing, too, Dawn. I sleep too good to teach anyone else. All I can say is try to relax and keep busy.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Aug 2014 Posts: 18 Member | Member Joined: Aug 2014 Posts: 18 | Hope its nothing! My experience was similar, except for the wider margin during biopsy. If it does turn out to be positive, you should probably get a second opinion from an ENT to make sure they took enough. I was told the protocol is 1 cm of clean tissue on all sides. My biopsy did get it all with clean margins, but I still had to go in and have a much larger area removed under a general, while they did frozen section pathology during surgery to confirm it was all clear. And on top of that, the tissue was sent out for post-surgical pathology to confirm it.
What part of WA are you in? I'm in King County on the Eastside.
Stage 1 SCC on tongue 3mm (7/1/14) Biopsy had clean margins Successful Surgery to remove more tissue and confirm wider margins (7/8/14) Hoping I'm one of the lucky ones and this is just a small blip in my life, and just makes for a story of "how I spent my summer vacation" down the road. Non Smoker, Social Drinker (pre DX, but no more!) | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Dawn, welcome to OCF! Hopefully you will not need our group but we are here and ready to help you if you do.
Not worrying so much is a learned skill. Practice by allowing yourself only a limited amount of time like 5 minutes to ponder the situation and then force yourself to "change the channel" and go do something positive or productive. Staying super busy helps as does doing activities that require lots of concentration like an interesting book or learning something new. With practice you can get a handle on constantly thinking "what if". Remind yourself as often as necessary... worrying wont change anything, not a test result or ever bring about anything positive.
Hang in there! We will be here to help get you thru this. ChristineSCC 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 | | | | Joined: Sep 2014 Posts: 2 Member | OP Member Joined: Sep 2014 Posts: 2 | Thank you for all of the responses. I'm trying to keep myself busy doing other things. It will help next week when I go back to work.
KitKat, I did have to go under general anesthesia for my excision. I think he was wanting to go aggressive at first. I'm hoping that worked. My next question is what do I do if it does come back cancer? Do I demand a scan or weight for their suggestions? I'm not sure what the standard protocol is.
I'm in Silverdale, Washington, which is Kitsap County, the other side of the sound from you.
Dawn Washington Excision/Biopsy 9/14/14
| | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Hi Dawn
If it comes back with cancer you won't have to demand anything. A biopsy is the comprehensive way to diagnose these cancers, and the surgeon will know the next step to take. Best to let the medical investigation run its course. I know it will be a long week, take some solace knowing you are on the right course to diagnose and treat the problem. Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Aug 2014 Posts: 18 Member | Member Joined: Aug 2014 Posts: 18 | [quote=DawnH] KitKat, I did have to go under general anesthesia for my excision. I think he was wanting to go aggressive at first. I'm hoping that worked. My next question is what do I do if it does come back cancer? Do I demand a scan or weight for their suggestions? I'm not sure what the standard protocol is.[/quote]
Oh, I see. That's a really interesting approach! Do you know how large your initial lesion was? Mine was only 3 mm, but had some mild dysplasia in the tissue surrounding it, but the biopsy itself still had clean margins. The actual surgery took, as I mentioned, 1cm more tissue on all sides, all of which was clean. Additionally, prior to the surgery, I had a full set of head, neck and chest CT scans, which were examined by the radiologist and my surgeon to see if there was any visible evidence that the cancer had spread to any nodes.
Due to the very small size of my lesion, and visual indication that it had not spread (according to the scans), it was determined that I would not have a neck dissection, because the research shows that it's unlikely that it had started to spread at that stage. So instead, I will have follow-up exams by my ENT every 2 months for a couple of years, then every 3 months out to 5 years after that. After 5 years, I'm not sure of the plan yet - either once per year or every 6 months, I assume. Of course this is provided I don't have any further problems prior to that.
Last week, I also went to Seattle Cancer Care Alliance for a consultation with one of their specialists, who concurred with my doctor's plan. The only difference is that he's recommending follow-up CT scans at 6 months and a year to make sure things still look the same, which my own doctor had not settled on yet for certain (we were still discussing).
So, depending on things, this would be the best case scenario for you. But depending on your pathology, you may have additional work to be done at this time. It is possible that they will also want to do a neck dissection to see if there is any node involvement. And depending on what they find, there could also be radiation treatment, etc. But of course that's for the doctors to determine based on the results of all further testing. I will keep my fingers crossed that instead of this route, your situation is just like my own. Or better yet, hat there is absolutely no evidence of disease in the tissue that was removed!
My husband lived in Silverdale when we met over 20 years ago, where he was a Sonar Tech on the USS Ohio.
Stage 1 SCC on tongue 3mm (7/1/14) Biopsy had clean margins Successful Surgery to remove more tissue and confirm wider margins (7/8/14) Hoping I'm one of the lucky ones and this is just a small blip in my life, and just makes for a story of "how I spent my summer vacation" down the road. Non Smoker, Social Drinker (pre DX, but no more!) | | |
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