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Joined: Jan 2012
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I am now (12 days) post surgery (partial laryngectomy). All seems to have went well and prayers have been answered. The surgeon was able to get all the tumor, plus clear margins, and most of my vocal cord was spared. He said they did biopsies in the OR that were negative - no cancer. More tissue was sent off to the lab to get more biopsies and those too - came back clear - no cancer. (Praise God). So at the post op appt - the doctor informed me that the tumor was actually 'precancerous'. My doctor always seems rushed and therefore my appointments are too. and the post op seems like a blur now. He said that 'most' people are done at this point - no need for radiation. Which is what I had hoped for - but now - like everything.... I'm worried and second guessing it. Did I really 'escape' that easily? Is there any way that some cancer could have been missed? Should I request more test? - scans, etc? Should I have done the radiation anyway? Because the tumor was precancerous - does that mean I shouldn't be quite as worried / concerned (with potential to spread or be anywhere else)? With a precancerous tumor - is the odds / statistics as great for a recurrence? I know... these are all questions I should have asked my doctor. frown But again, I felt rushed - I wasn't prepared with my questions and I was just so relieved to hear that I was CANCER FREE.

Any advice, insight, suggestions, etc. that you have that might help calm my fear(s) will be greatly appreciated.

Thank you so much.


1/10/12 laryngoscopy
1/12/12 diagnosed with laryngeal cancer (T1N0M0) HPV+
2/1/12 had partial laryngectomy
2/7/12 post op appt. surgery seems to be a success (no other treatment needed). Praise God! smile smile smile
3/20/12 6 week follow up. all seems to be well
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If your tumor was precancerous then you are one lucky patient! We all have concerns of a recurrence. Try your best not to live your life constantly thinking "what if". This is beyond your control. There really isnt anything you can do to prevent it from coming back. Just try your very best to make the most of every day and be happy knowing that right now you are cancer free.

You should be having thorough check ups and future scans to ensure you remain cancer free. If your current doctor does not answer your questions and seems too busy to give you enough attention then it might be a good idea to find another doctor you are more comfortable with. Communication is very important with helping you to feel at ease and satisfied with your choices. If your doctor is too rushed then speak up and tell him you need more time as you have questions. Congrats on the great results!


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
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I agree with Christine that you are lucky it was only precancerous--that means no cancer. Obviously you are going to have to be watched closely.

Christine is absolutely right about living your life without fear. (hard to do, though at times)

But your doctor should have had more to say, I think about watching it. I would definitely get hold of someone (a PA, a nurse) ask that those questions be forwarded to the doctor or answered in some fashion. You need closure with your present experience, even though you realize it will not be "closed" totally. If you are really unhappy with the rushed doctor, you are always open to finding someone else who will not make you feel like your case is only one of many they have, and thus not so important.

Just my take on it.
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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Thanks ladies. He did say that we would need to watch it very closely. I have a follow up appointment in 6 weeks to be scoped. Is that sufficient enough at this point? Should I ask for a scan at that time (if it's not offered)?
Thanks again for your time. I really appreciate your input smile


1/10/12 laryngoscopy
1/12/12 diagnosed with laryngeal cancer (T1N0M0) HPV+
2/1/12 had partial laryngectomy
2/7/12 post op appt. surgery seems to be a success (no other treatment needed). Praise God! smile smile smile
3/20/12 6 week follow up. all seems to be well
Joined: Jul 2011
Posts: 945
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Hi, Annie
Before you have your appoinment, get a 3-ring notebook. Put all of your paperwork in it.

In another section, write down your questions with plenty of room for answers. You can make "Dr. Rushed" wait as you write down the answers.

People have a tendency to take people more seriously if something is written down - it looks more professional. On your end, it will help you keep on track, and not get flustered. You will want to ask the questions after the exam - but don't let him out of the room without answering your questions.

My would often say, when she had done as much as she could do, "let go, let God". It's hard not to be nervous, but it looks like you are on track for your recovery, and to be the best organized patient ever at your followup. Best wishes and enjoy every day!

Last edited by Maria; 02-14-2012 01:57 PM.

CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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After having surgery swelling would be a problem for any scans. You do NOT want to deal with a false positive result from having a scan too soon. My doc told me after finishing radiation a scan should not be done until at least 3 or 4 months later. Swelling and healing from surgery can take up to a whole year for your body to adjust itself. I would think that after waiting 4 months you should be ready to get a scan. Glad to hear you will be getting scoped. Sounds like your doc is a good one but just overworked which causes them to rush. The notebook is a great idea! I had one too and placed a spiral notebook inside it and stapled a business card from every single specialist I had to the back cardboard cover. Made it very easy for me to stay organized and also contact any of the specialists who I didnt always see on a regular basis.


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
Joined: Jan 2012
Posts: 21
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Posts: 21
Thank you for the information Christine. I have a folder with all my paperwork so far - along with a note pad. I'll have my questions ready for the next appointment wink


1/10/12 laryngoscopy
1/12/12 diagnosed with laryngeal cancer (T1N0M0) HPV+
2/1/12 had partial laryngectomy
2/7/12 post op appt. surgery seems to be a success (no other treatment needed). Praise God! smile smile smile
3/20/12 6 week follow up. all seems to be well
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
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Your welcome! Glad you are organized. Make sure you ask all your questions before your doc scurries out of the room. Remember he works for YOU! Good luck with everything coming up!


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
Joined: Aug 2011
Posts: 596
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Christine and Maria,
I have my notebook from day 1. Christine, I do exactly the same thing with my team's business cards!

Annie,
First of all, congrats on your wonderful results!

A doctor will not walk out of a room when you pull out your notebook with your list of questions. He/she most likely will not leave until all of them are answered. Try to prioritize them in order of importance. Have your notebook on your lap before he/she walks in the door so you're not scrambling to pull it out and flip through pages as he tries to scurry out the door.

The routine I have with my doctor is that he examines me and talks about how things look and when he's finished, we go over my questions. After a while, you'll find that many of your questions/concerns will be answered during the exam. It also helps you and the doctor to stay on track and will make the appointment more efficient.

Best of luck,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Feb 2012
Posts: 38
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Joined: Feb 2012
Posts: 38
I have a trick with my smart phone, I record our sessions.
The MD see's this, they make sure they answer all my queries, and often prompt me when they know the details are important.
CTCA starts you out with a notebook/briefcase with lots of info, both in & out of facility (motels, costs, transportation, etc), I felt very comfortable there, their slogan is "As Mother would have it".

Last edited by seattlepaul; 02-16-2012 07:14 PM.

69yo male, Steam Engineer, Me=4,SCC=0, loving wife, living life as it comes (no other option)
We are all born from Mother, but live and die alone.
Make the best of it, Mommie did all she could, daddy was just a guidance councelor, the rest is ALL up to you.
...and now, 3rd occurance: Surgery 5/1/12
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