| | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) |  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Yes consider a second opinion before they dump more poison into your body and GREAT NEWS. I'm sure that a big weight off your mind.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 | Minnie
I do not think anyone would blame you for getting a second opinion. If there is any question in your mind, that question needs an answer !
Kevin
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | Minnie --
I don't think you'd "bump your doc's nose out of shape." As I recall, after Gail Mac's husband was referred to Hopkins for treatment, his doctors there helped arrange for another opinion at Sloan-Kettering. You owe it to yourself to learn as much as you can.
-- Leslie
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | Joined: Nov 2006 Posts: 39 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Nov 2006 Posts: 39 | Hi Minnie,
Glad to hear biopsy results came back negative, congratulations. As for this other area the doctor felt you need chemo for... he stated that "if it's cancer it will shrink", is it something they can watch and see for a bit to see if it doesn't change on it's own? Not meaning that it will magically disappear, just wondering if he suspects it to be cancer, wouldn't it continue to grow? If I were in your shoes I would be reluctant without a biopsy. I would definately lean towards getting another opinion before going with chemo.
Good luck with your decision.
Laura
Laura T T2NOMO Small Salivary Gland Cancer
| | | | | 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 | MINNIE!
First, what great news! I am glad to hear you even had the trifecta! You should get as many opinions as you think you need to feel comfortable about what you are doing. MD Anderson has a physician consult process that allows them to review everything with your doctor and give a written concurrence or challenge to you. I did that with my treatment plan before it started and they were way cool about it. They suggested sending in summary reports and scans if needed and the doctor called me to tell me he not only agreed 100% but he wanted me to know that my doctor is who he sends people to for second opinions.
I had the swallow test done and even though 100% of what I swallow stops where my trachea is a little crooked, they felt I had developed adequate strategies to use water or liquid or more food to move out the portion that was stopping. I never know what to think about what some of the experts tell me. I still struggle with swallowing daily but they really don't know what to do.
I have come to the conclusion that aftercare is the biggest need today. I was quoted by a doctor that there are 5 million survivors out there and once treatment is over, they are literally pushed out into the world and there is no incentive for a medical oncologist, for example, to see those patients because he will see a drastic revenue reduction. We are trying to address that in Dallas but certainly it will be a long road filled with bumps and obstacles. One thought was to utilize more Nurse Practitioners, etc. I think once the poison, burn and slash us up, they need to physically rebuild the body from the core up. We are banged up just as bad as a person in a car wreck yet they get rehab.
Anyway, my nickels worth ($.02 adjusted for gasoline price).
Ed
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: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Dear Minnie,
You've made my day! I am so relieved...I'll bet that you feel like you've woken up from a bad dream, not really sure yet that it wasn't reality. I hate it that you still have an "area of concern." I have to agree with the others in that I'd want a diagnosis before proceeding with treatment of any sort. Your dr. is using chemo as a diagnostic method.....and it seems a little drastic to me.
You know that we wouldn't all be offering our opinions unless you asked for them.....BUT you did, so you can take them for what they are worth. You've been through a lot, but a biopsy under anaesthesia shouldn't be a huge stumbling block for you, by comparison with the things you've already endured. I sure will check back to find out what you decide, and I'll keep you in my prayers that you will have clarity about the path you should follow.
XO--Colleen
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Wow...great news on the biopsies. And, I echo the sentiments of everyone else - I would want to definitively know I had cancer before I embarked on a course of chemo. If you need it, I know you will get through it, but if you don't need it then what is the point?
Maybe you need another chat with the Dr. about the risks of the surgery to biopsy the troubled area. He would need to convince me that the effects of this procedure would be debilitating. Is he understating these risks and trying to "gently" push you in a direction? Time for a frank chat. Good luck and keep us posted. You are in my prayers.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | Such good news! I know you don't want to upset the apple cart with your doc at hopkins, but what harm would a second opinion be? It is your life, not your doctors. Duke is close to you and it is a good ent and cancer center.
Please get another docs ideas.
Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
| | | | | Joined: Nov 2007 Posts: 27 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Nov 2007 Posts: 27 | Minnie,
Oh I am so glad they didn't find cancer in your biopsies! What a great blessing. I agree with others' comments. Don't be afraid to get a second opinion.
I live in Richmond,VA and have been very happy with my doctor. I would certainly give you his name if you wanted it.
I also had a barium swallow test. That might be good to. They seem to be able to tell a lot from that.
Good luck and let me know if you want my ENT doctor's name.
Praying for you to have peace and rest.
Cindy
SCC of tongue removed 3/07 mod. left neck dissection. Tumor reappeared 6/07. Removed 8/07, right neck dissection, free flap from wrist for tongue graph. Radiation 30 (IMRT), chemo cisplatin 4 rounds finished 11/07.
| | | | | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | You know Minnie, I forgot about the barium swallow test. I was scared of it because I could only swallow water and not well. I went to take it and they just about forced me into trying to swallow pudding. I did and then they replayed it for me on the computer to show me that I was swallowing correctly. They can see everything on that xray. You just light up. They could for sure see any obstruction in your throat.
Just a thought. I am so sorry you have to go through this again.
My heart aches for you.
Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
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