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Weird bumps after tonsillectomy #196884
08-08-2018 04:58 PM
08-08-2018 04:58 PM
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Tammy7272 Online OP
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Hi I posted a few months ago about some red and white areas in my throat and on my soft palate. I have also had a continuous scratchy throat and allergy symptoms since November of last year. I am a former alcohol user and of course am worried about that being a cause.

Anyway I have been to several ents who have basically told me I don’t have cancer. Not convinced I visited another specialist who has experience in oral cancer. He suggested taking out my tonsils and that happened to include the red spots on my palate but I don’t believe it was even mentioned for recognition. His nurse called a few days later and said everything is ok. I obtained the report and to me it only included that I had tonsil stones no mention of the scratchy throat or redness. It looked to only have a gross description and a general follicular hyperplasia diagnosis.

What has me concerned is that I am now on day 24 post tonsillectomy and in my tonsil beds there are areas of lumps that are growing rather than going away. It looks worse everyday and is slightly painful. I don’t have a fever or any other symptoms of infection. I obviously have researched this and am finding nothing. Which makes me wonder if anyone else who did get an oral cancer diagnosis have issues like this after a biopsy?

The Dr. didn’t want to see me for 6-8 weeks but I called today and they are going to see me on Friday.

Obviously I’m not looking for a diagnosis here just wondering if this could be a red flag.

Thank you so much for your time and consideration,
Tammy

Re: Weird bumps after tonsillectomy [Re: Tammy7272] #196886
08-08-2018 06:26 PM
08-08-2018 06:26 PM
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ChristineB Offline

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Im very glad you have had a successful surgery. Comparing a biopsy to a surgery is not close to an equal comparison. Biopsies take a teeny tiny sample of tissue where removing your tonsils took substantially more tissue. A biopsy takes tissue about the size of a grain of rice and removing tonsils would be significantly greater amount so after effects would be drastically different.

You have done the right thing in calling your doc to get a much sooner appointment. You could have an infection going on or some sort of fluid retention causing swelling. Infections can quickly turn into a serious health concern. I normally do not show the usual signs of infections and am usually pretty surprised when that kind of thing happens to me. Many here who have been diagnosed with OC do not have many obvious symptoms which is often why OC is not noticed when its in its earliest stages. Hopefully what you have is nothing major. Good luck!!!


Christine
SCC 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 smile
Re: Weird bumps after tonsillectomy [Re: Tammy7272] #196887
08-08-2018 07:01 PM
08-08-2018 07:01 PM
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Tammy7272 Online OP
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Thank you Christine! You are always so kind and helpful. Hope you are doing well!

I’m hoping it’s just something wacky going on. My mind just drifts to the tonsillectomy ticking off the tissue and all heck’s breaking loose.

Also does anyone know if when you get a biopsy if it should include a microscopic picture? I have had one biopsy and now the tonsillectomy and all my reports only include the basic stuff, clinical info(which one Dr. said benign neoplasm and this one said tonsil stones) gross description and final diagnosis. I’ve had unrelated biopsies on skin issues in the past and always had the micro included with those which some even took advantage of certain stains. Am I silly to think these are not getting full attention because the Doctors do not think they are visually worrisome?

I’ve tried inquiring about this but I can’t seem to get a clear answer.

Thanks again!

Re: Weird bumps after tonsillectomy [Re: Tammy7272] #196888
08-09-2018 02:30 AM
08-09-2018 02:30 AM
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ChristineB Offline

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The path reports Ive seen do not have photos. This could be something that is done differently according to where its being read?? Or, maybe its done differently for each hospital or doctor? I would ask your doc tomorrow, at your next appointment.


Christine
SCC 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 smile
Re: Weird bumps after tonsillectomy [Re: ChristineB] #196889
08-09-2018 03:31 AM
08-09-2018 03:31 AM
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Tammy7272 Online OP
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I’m sorry for the confusion, I meant a microscopic analysis, not picture. No where have I seen an evaluation microscopically.

Re: Weird bumps after tonsillectomy [Re: Tammy7272] #197137
09-13-2018 05:21 AM
09-13-2018 05:21 AM
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Tammy7272 Online OP
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Hello to anyone who maybe out there. I visited with the Dr. on 8/10 and he said that I looked to be healing normally. It is now about 5 weeks later and while I feel like the area did heal up there continues to be new lumps that are forming where my tonsils used to be.

I obtained all my records from this facility which happens to be a CCC. I was disappointed that there were several inaccuracies along the way. During my surgery the Dr. made note of an abnormal area behind the tonsil but decided to resect it along with the tonsil and there was no emphasis put on it at all. When the pathology examined the tonsils there was no mention of this abnormality, which was white and a fixed to the back of my throat. Had been there for approximately 5 months that I know of and who knows how long before that. My biopsy came back as follicular lymphoid hyperplasia and I can see that pertaining to the tonsils yet there was no word whatsoever on the white abnormality. I cannot find the microscopic picture anywhere. Just the gross and final diagnosis. I just think this would be helpful in knowing if there were any features of leukoplakia. From all I’m reading white spots without a definitive reason are labeled leukoplakia. I know this is small potatoes to what many of you are/have gone thru. It’s just I’m really bothered by feeling left out in the abyss when it comes to my situation. I have continued to have a constant scratchy throat thru all of this.

The Dr. said he spoke to the pathologist himself and that there was no dysplasia. I am grateful for that news but I would like to know what he DID see under the microscope concerning the white tissue and have it documented just incase I would need it for future reference.

Again thanks for listening. I’m just someone who likes to be informed as much as possible and I’m feeling like there is should be more information that I’m not privy too.

Take care and have a blessed day.
Tammy

Re: Weird bumps after tonsillectomy [Re: Tammy7272] #197138
09-13-2018 07:27 AM
09-13-2018 07:27 AM
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gmcraft Offline

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Tammy, maybe the best course of action is to ask your doctor directly? I don’t mean to challenge him, but to clarify matters for you. None of us here has the medical knowledge or training to be able to answer the questions you have about the pathology. You wouldn’t us to do that anyway as it will be really irresponsible of us.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: Weird bumps after tonsillectomy [Re: Tammy7272] #197139
09-13-2018 07:54 AM
09-13-2018 07:54 AM
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Tammy7272 Online OP
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Thank you and I understand what you’re saying. I did ask him and I felt like I was being blown off...he wouldn’t commit to any pathology in writing only what little I saw on the final report. Even the clinical info was not accurate. This is the 2nd doctor who has biopsied, the 1st was an ent surgeon who told me point blank it was not cancer before biopsy! I had to practically beg for him to do so. His came back with chronic inflammation after clinical info to pathologist that it was a benign neoplasm. He also did not provide any detailed insight into microscopic view. I called the pathologist myself to enquirer. He said they don’t do a histological picture unless they see something concerning. Isn’t that just a given when they look under microscope? Again very confused on why I am not getting the microscopic evaluation. On follow up the Dr. was very rude with me and I asked if this is something I need to keep my eye on. He half muttered yeah and then let me go. I feel in my heart this is at least leukoplakia and what else more? It’s really taking its toll on me!

Re: Weird bumps after tonsillectomy [Re: Tammy7272] #197140
09-13-2018 09:25 AM
09-13-2018 09:25 AM
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ChristineB Offline

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Just remember doctors work for YOU!!! If they arent fully explaining things to your understanding continue to ask clarifying questions. If it was me, Id specifically ask the doc who else could better explain this so I can understand it. Go to the office manager and so on until you get the info you are looking for. The squeaky wheel is what it takes sometimes to get answers. Just always be polite as possible, Ive found most medical professionals really do try their very best to help everyone especially for the patients who are nice and polite.

Im sorry but our members of OCF, we're just patients/survivors and caregivers without medical degrees or backgrounds. Our interpretation of tests is usually very limited to our own specific conditions. For 99% of our members its oral cancer. Most of us have not had any experience with other less serious ailments which is why your questions do not get the replies you are hoping for. Maybe your family physician would be a better resource to ask this sort of thing. Asking oral cancer patients/survivors and their caregivers to help with issues that are different from what our site primarily deals with will not get you the help you need.

You may also go for a second opinion if you feel the test results were not properly handled and the second doc may be able to look into it. Im sorry but this sort of thing is a bit beyond what the majority of OCF members understand or can help with.

I hope you can one day soon get to the bottom of what you have going on! Hopefully you will never go thru oral cancer, its treatments and the seemingly never ending recovery for it. Best wishes!


Christine
SCC 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 smile
Re: Weird bumps after tonsillectomy [Re: Tammy7272] #197141
09-13-2018 09:56 AM
09-13-2018 09:56 AM
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Posts: 13
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Tammy7272 Online OP
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Christine I really do appreciate your advice. I am not assertive by nature and I need to learn to speak up more. Part of me is in a zone to want to believe them when they voice it but the skeptic in me needs to see the results. I am no stranger to biopsy results as about 10 years ago I had numerous biopsies for an unexplained rash, hence I always saw my detailed histology...I know they exist. Never did I receive such vague reports.

I do have an appointment with my GP in a week and a half and I will speak with him about this.

I also hope to never face such a diagnosis because quite frankly I don’t feel I’m that strong. I have read story after story on here and am just moved with emotion when I ponder what a lot of you have endured. I am sorry if I have stepped on any toes that truly is not my intent. I’ve just gathered that it isn’t unusual for patients here to see what exactly they were dealing with. It’s the not knowing that drives me crazy. I’ve even been told I don’t fit the criteria! For heavens sakes I’ve been honest with my history but above that, it doesn’t seem that there is a “criteria”

I appreciate the time you have spent on me. I’m just scared and trying to understand what I should expect.

Please continue to shine and be the example that you are!

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