Waiting for first biopsy results today and scared
Hi, All. I'm a newbie. I just had a biopsy on Tuesday, March 31, 2016, and was told the surgeon would call today with the results. They took punch biopsies of my upper back gum area, left side, and one of the right side of my tongue. For years, I have suffered with Oral Lichen Planus, and the oral surgeon thought the tissue on my tongue was that. His main concern was the upper gum area. In fact, he called me himself the day after my initial appointment, when he discovered that they had scheduled my biopsy for two weeks ahead, and told me to take a cancellation on March 31. I asked him if it was necessary, as I had a full schedule and he said he considered it urgent. The biopsy went well but here it is, the day he is to call me. I am honestly terrified because this gum area has been like this for weeks. I first had something similar about 2 1/2 years ago, but it resolved on its own. His notes from our initial appointment identified the red gum area as Erythroplakia. My google searches came up with very frightening statistics and pretty much said that most cases turned out to be cancerous. I hope for the best, but my mind has been working overtime since May 25 and my anxiety level is through the roof. The only two people who know are telling me to stay positive and not worry until I get the results. But that isn't possible. I'm grateful that this group is here.
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I was in that position last
I was in that position last November and found out I had stage 4 tonsil cancer. Today I am cancer free. Thank God. Just stay positive and you are in the right place if you find out you have cancer, with all the wonderful people on here who have been there and done that. I hope you find out its nothing.
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Thank you, cardoza33. I am trying to stay calm. Fingers crossed.
Thank you so much for replying to my post. I'm so glad to read that you are now cancer free! If you don't mind my asking, when they tell you the results, do they tell you what to do next, or just leave everything up to you to find and contact the next doctor? This was an oral surgeon who did the biopsy, and he was a referral from my dentist. Did the person who gave you the results send you for more tests right away, or did they just give you a suggested doctor to call, and you then saw them before getting more tests? I know it sounds like I am getting ahead of myself, but I am one to consider the worst case scenario in order to try to prepare. If the surgeon calls me before my husband gets home, I won't have anyone with me.
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Biopsy resultsSylMarie said:Thank you, cardoza33. I am trying to stay calm. Fingers crossed.
Thank you so much for replying to my post. I'm so glad to read that you are now cancer free! If you don't mind my asking, when they tell you the results, do they tell you what to do next, or just leave everything up to you to find and contact the next doctor? This was an oral surgeon who did the biopsy, and he was a referral from my dentist. Did the person who gave you the results send you for more tests right away, or did they just give you a suggested doctor to call, and you then saw them before getting more tests? I know it sounds like I am getting ahead of myself, but I am one to consider the worst case scenario in order to try to prepare. If the surgeon calls me before my husband gets home, I won't have anyone with me.
Hi. SylMarie,
Ah, the anxiety of waiting. I think that not knowing is most disturbing, mentally. The physical side effects are bad enough as we all go through treatment, but the unknown creates monsters that are hard to banish. Hang in there.
i'm uncertain where you are being treated, but I was treated at the Barrett Cancer in Cincinnati. On the day of diagnosis, when I met with the surgeon, I was assigned a nurse navigator, who has guided and assisted me through each step of this journey, from helping me choose an oncologist and radiation oncologist, to scheduling appointments. Marilyn was in the examining room during my weekly appontments with my oncologist, she was always available, and an incredible source of knowledge and information. She, as well as my doctors, were and are compassionate, caring professionals. I feel so blessed. I hope that you have a team that you can rely on as you walk this road. With the support of husband, and family, as well as the team at Barrett Center, my centuximab treatments, and 30x radiation was doable.
I'm two weeks post rad., and waiting for my mouth to fully heal, and my taste to return. I wish you well, and know there are many on this board who will support you.
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Last October, my husband was
Last October, my husband was diagnosed with stage 1 tongue cancer. It came out of the blue. He had something suspicious on his tongue, had a biopsy from an oral surgeon, and then we both went to the oral surgeon for results. The cancer diagnosis hit us like a ton of bricks. We both really thought it wasn't going to be cancer. But it was. Now my husband is 4 months out of treatment and doing great and is NED, no evidence of disease.
After the diagnosis, the oral surgeon gave us a referral to the top ENt in the area for oral cancer and an appt was set up right away. There was nothing to do but wait for that appointment. The waiting was horrible. But once we got into the appt., things moved very quickly with surgery and everything. And that was great. The ENT also suspected that my husband has lichen planus, with we had never heard of before!
I hope you don't have cancer. If you do, I hope they caught it early. And please ignore the statistics online. I am wishing you all the best. Come here to chat anytime.
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I just heard. It is cancer.swopoe said:Last October, my husband was
Last October, my husband was diagnosed with stage 1 tongue cancer. It came out of the blue. He had something suspicious on his tongue, had a biopsy from an oral surgeon, and then we both went to the oral surgeon for results. The cancer diagnosis hit us like a ton of bricks. We both really thought it wasn't going to be cancer. But it was. Now my husband is 4 months out of treatment and doing great and is NED, no evidence of disease.
After the diagnosis, the oral surgeon gave us a referral to the top ENt in the area for oral cancer and an appt was set up right away. There was nothing to do but wait for that appointment. The waiting was horrible. But once we got into the appt., things moved very quickly with surgery and everything. And that was great. The ENT also suspected that my husband has lichen planus, with we had never heard of before!
I hope you don't have cancer. If you do, I hope they caught it early. And please ignore the statistics online. I am wishing you all the best. Come here to chat anytime.
I got the dreaded call a little white ago. I was told it was a "small cancer" on my left, upper gum tissue. When I asked the surgeon what that meant, he said it was "moderately differentiated squamous cell carcinoma," involving the gum tissue and bone. He explained that it would be better to find well-differentiated carcinoma, but that because he had done punch biopsies, the specimens were small, so I can be hopeful that the larger area around the cancerous tissue could be well-differentiated. I asked him questions about surgery, radiation, chemo, neck dissection, etc. -- all the things I have been reading about. He said that if the surgery got clear margins, I may not need the radiation and chemo, and whether they would recommend neck dissection would depend on what they found during surgery. He said that the doctor I went to, would do scans to determine the surgical plan. He recommended a surgeon at Johns Hopkins, with whom he works closely, and encouraged me to google him and see his credentials for myself. If I want to get things started quickly, his office will immediately get things rolling and get me an appointment. We live in South Florida, so my husband and I will have to travel to see this doctor. Since I just got the news, my husband and I just decided to do our research about this surgeon in the N.E., and unless we read something concerning, which I doubt, it will be the place to go. I trust this oral surgeon who recommends him highly and who has a good relationship with him. Do most people who go for surgery out of state have the option to do follow up treatments back in their own states? If anyone has any experience with this, please let me know. I would greatly appreciate it.
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Ugh. I am so sorry. Yes, the
Ugh. I am so sorry. Yes, the scans will be important. They will likely help determine your treatment plan. With my husband, the doctor thought prior to the scans that the cancer spread to the nodes (my husband had a swollen node on the right side). But the scans didn't show that. So during the surgery, the doc did a partial neck dissection to be safe, and all was clear in the nodes. The margins in his tongue cancer were clear after surgery as well, and he was at stage 1. We did not have to do chemo or rads, but it was recommended by our docs in Houston because my husband is young (41 now) and we wanted to fight it has hard as we could. But that kind of decision is going to be between you and your doctors and depend on your cancer staging.
We live in Houston and used doctors affiliated with MD Anderson, so we did not have to travel for treatment. But many in here have. I am sure people will come in here to advise you. I am originally from Baltimore, so if you end up at Hopkins and need to know anything about Baltimore, give me a holler.
You will be in my prayers and thoughts.
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Sorry about the news.........SylMarie said:I just heard. It is cancer.
I got the dreaded call a little white ago. I was told it was a "small cancer" on my left, upper gum tissue. When I asked the surgeon what that meant, he said it was "moderately differentiated squamous cell carcinoma," involving the gum tissue and bone. He explained that it would be better to find well-differentiated carcinoma, but that because he had done punch biopsies, the specimens were small, so I can be hopeful that the larger area around the cancerous tissue could be well-differentiated. I asked him questions about surgery, radiation, chemo, neck dissection, etc. -- all the things I have been reading about. He said that if the surgery got clear margins, I may not need the radiation and chemo, and whether they would recommend neck dissection would depend on what they found during surgery. He said that the doctor I went to, would do scans to determine the surgical plan. He recommended a surgeon at Johns Hopkins, with whom he works closely, and encouraged me to google him and see his credentials for myself. If I want to get things started quickly, his office will immediately get things rolling and get me an appointment. We live in South Florida, so my husband and I will have to travel to see this doctor. Since I just got the news, my husband and I just decided to do our research about this surgeon in the N.E., and unless we read something concerning, which I doubt, it will be the place to go. I trust this oral surgeon who recommends him highly and who has a good relationship with him. Do most people who go for surgery out of state have the option to do follow up treatments back in their own states? If anyone has any experience with this, please let me know. I would greatly appreciate it.
My cancer was SCC just above the vocal cords. I'm in California, and I went to Stanford Medical 215 miles away. They were my tumor board and team. The head doctor was the head of Surgery, Oncology, ENT, and saw me on all follow ups. Now he did have me see a local EMT for every other visit to make it easier on me. I only had surgery and no chemo or radiation and had to be seen every two months the first year then it went to 4 months and now 6 months. Now I only see Stanford as he has the best equipment and scopes my throat and my local just has mirrors.
They may have you see a local doctor, but my "Guess" is the one who did the surgery will want to do the follow ups. Now for me, If my local ENT thought he might question something he would just send me back to Stanford anyway. I never saw an ENT, in the beginning, it was my Lung doctor who found it and we both felt Stanford was the best for me. No use waiting to get into a local ENT who would not be doing the surgery so he called Stanford on a Wednesday and I was there the next week on Thursday. [Tumor Board only sees people on Thursday]
What questions you have write them down and leave room for answers and hand it to the doctor. That seems the best as you will get all answered and when he answers the first one you can just go blank and be overwhelmed. You will get through this and you are not alone. This is a great group for answers and support. We all understand what you are feeling and will go through.
Bill
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Thank you, all. My oral surgeon faxed my records to Johns Hopkins today. I was give the name and phone number for the secretary/scheduling person for the oncologic surgeon I wiil be seeing, and was told to call her today, and if I didn't reach her, to call again on Monday. The oral surgeon is friends with this oncologic guy, so the office said if I run into any problems, the surgeon will call the oncologic surgeon personally. It seems that my oral surgeon is on the ball and is wasting no time. Right now I am concerned about the gingival cancer having spread, or being worse than the simple bunch biopsy showed, so I am anxious to hear back from JH, get up there, and find out exactly what I'm dealing with. Last night, after receiving the diagnosis, I had a fitful night's sleep and two nightmares that left me awake and pacing. You know, those dreams that stay with you, long after you wake up? My husband and son think I'm handling this well, but I feel like I am on an emotional roller coaster. I'm okay for a little while, but then the realization washes over me and suddenly, I'm thrust back into a deep hole. At 3:00 a.m., I started thinking, "Oh, my God, this is really happening." I think I will be one of those patients who will need to find a therapist who is experienced with cancer patients, because as somebody who has battled Hashimoto's Disease (autoimmune disease) for years, I'm starting from a tired place to begin with. That has made me think that I have started with a disadvantage. Plus, I'm not a spring chicken. Thanks for your input. I greatly appreciate it!
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Sleep
Is too important to miss. Ask for something to help with sleep and maybe step up your exercise to help with the stress.
Lifting prayers for calm and peace.
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join the club!CivilMatt said:welcome
SylMarie,
Welcome to the H&N forum where many of us have thought and said “Oh my God this is really happening”. It sounds like you have a good team and whatever route you choose, they will keep a close watch of you after treatment.
Good luck,
Matt
The 'Oh my God is this really happening?' feeling seems to affect us all. I felt it too, and still do. Personally I am thankful for this forum - I feel much less isolated - and also that I live in England, close to a top teaching hospital and get best quality treatment free. The downside is that there is sometimes a long waiting list. I was told 'up to five months' for MOHs surgery on sebaceous gland cancer of the eyelid (which may well have been lethal), but they moved mountains and set a date less than two weeks ago.
Good luck, stay brave. We are all in this together and support each other.
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