| | Joined: Mar 2013 Posts: 37 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Mar 2013 Posts: 37 | Hello everyone, I posted a week ago about my tongue biopsy last week. I got results today (on my 30th birthday). I have cancer, the biopsy showed that it is just stage 1. But I have more x-rays, and blood work tomorrow to make sure it is not anywhere else.
What questions should I ask. I have no enlarged lymph nodes that they can tell (good news). I have never smoked in my life, and I drink on VERY rare occasions, I have never even had a cavity.
It is not base of the tongue, but like I said, I don't know much. Guidance is greatly appreciated. Thanks again.
Lori, age 30 (HPV-, non-drinker, non-smoker, non-tobacoo user)
Dx 3/18/13 - T1N0M0 SCC L.Tongue
Tx 4/4/13 - Partial glossectomy (no rad/no chemo).
8/8/13 - Thyroid FNA - benign nodule
12/20/13 - Tongue Biopsy - Mild hyperkeratotic dysplasia
12/26/13 - Lymph FNA - benign (dx Cervical lymphadenopathy)
3/17/14 - Tongue Biopsy - normal tissue
5/5/14 - Tongue Biopsy - (awaiting results)
| | | | | Joined: Apr 2012 Posts: 23 Member | | Member
Joined: Apr 2012 Posts: 23 | Hi las,
I went through the same kind of thing, 35th birthday and right before dinner at a steakhouse I got "the call". Cancer in my tongue, left side and it was stage 3. I scheduled surgery as soon as I could and had a radical neck for lymph removal, glosectomy with reconstruction, a trache tube and a feeding tube. I know it sounds like a lot but really it was'nt that bad. I was freaked out when I woke from anesthesia but after getting used to everything I was and still am very thankful for all the people, my mom and the hospital for saving me. 6 months later I had a recurrence and had another radical neck dissection with chemo and radiation a month after. On June 13th I will be a year past finishing chemo, here's what I can tell you:
1)Listen, take notes, write questions down and bring them with you to be answered. Doctors try not to bombard you because there is a ton going on and its a lot for you to remember so writing it down helps.
2) Get plenty of water through the whole thing. I had a bad time with constipation, keeping up on your water will help keep you somewhat regular. Its bad enough you've just got done with surgery, not being able to "go" just adds misery.
3) Dont workout or eat a big meal before your surgery cut-off window. I had a hard workout and ate a large meal before the 24hrs cut-off, that was a bad idea. I woke up from anesthesia and my arms/chest were cramped to my body. The large meal 24hrs prior made the constipation from the drugs waaay worse.
8/24/11- SCC stage3:tongue reconstruct from left arm & radical neck, feeding tube,trache.
3/28/12- SCC:radical neck again,chemo/radiation.
Started Cisplatin/radiation 5/2/12. Finished 6/13/12.
37yr old male.
7/19/13: All checks/scans have been good. Body weight and strength have return.
| | | | | Joined: Apr 2012 Posts: 23 Member | | Member
Joined: Apr 2012 Posts: 23 | I know Im forgetting some stuff but someone will fill in the blanks for me.
Above all, make sure you trust your surgeon and are confident in him or her. After they put you out you're in their hands, so if you feel good about him/her you'll be relaxed.
Try to take battles as they come, dont get worried about the post surgery "future" stuff you read on here. Somethings (side effects) might not happen to you.
Last edited by Jodezilla; 03-18-2013 05:45 PM.
8/24/11- SCC stage3:tongue reconstruct from left arm & radical neck, feeding tube,trache.
3/28/12- SCC:radical neck again,chemo/radiation.
Started Cisplatin/radiation 5/2/12. Finished 6/13/12.
37yr old male.
7/19/13: All checks/scans have been good. Body weight and strength have return.
| | | | | Joined: Nov 2011 Posts: 60 "OCF Down Under" Supporting Member (50+ posts) | | "OCF Down Under" Supporting Member (50+ posts)
Joined: Nov 2011 Posts: 60 | I am so sorry to hear of your news. Makes any qualms you had about turning 30 insignificant. I am a carer so keep that in mind when considering advice. Number 1, go to a comprehensive cancer centre for care. Number 2, do number 1. Number 3, accept all help and support available to you. Questions you might ask -- depends on some of the other test results. You will want them to go over you pathology report in detail. This might include depth of invasion, cell differentiation and maybe evidence of perineural invasion. Maybe HPV status although HPV is more associated with cancers more towards the back of the mouth. Based on the results of your follow up tests, sometimes they recommend surgery alone, sometimes you have to decide whether or not to go for more aggressive treatment and that's when the questions come rolling out because at that point there are some mighty big decisions to be made. You must be reeling from all this and your mind filled with darkness and despair. While this site is helpful, it can be scary at the same time. Try to keep things in perspective. The most frequent posters with best advice is from people who have been on this merry go round for more than one turn but there is no reason to think that will be your lot. Prepare for a huge mental fight, perhaps a physical one, too. Take you best shot at the Big C and allow yourself to be optimistic that you will kick its nasty behind. Wishing you the best. Laura
CG to husband Stage IV SCC left tonsil 11/11. Mets to 7 nodes on left, 2 on right, no distant mets. PEG, 7 weeks radiation and weekly Cisplatin ended Feb 10, 2012. PET 04/12 areas consistent with inflammation, complete response in nodes. Recurrence 09/13 pulmonary lymphatics. Died 22 Oct following an allergic reaction to Erbitux.
| | | | | Joined: Apr 2012 Posts: 23 Member | | Member
Joined: Apr 2012 Posts: 23 | lam007 also reminded me of one thing you absolutely cannot do with out: Someone to care for you.
I am a lucky man to have such a great Mom, she took care of me through the whole thing and it would've been a nightmare without her. I cannot emphasis the importance of a care giver, if it can be a close relative that's the probably the best IMO.
8/24/11- SCC stage3:tongue reconstruct from left arm & radical neck, feeding tube,trache.
3/28/12- SCC:radical neck again,chemo/radiation.
Started Cisplatin/radiation 5/2/12. Finished 6/13/12.
37yr old male.
7/19/13: All checks/scans have been good. Body weight and strength have return.
| | | | | Joined: Mar 2013 Posts: 37 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2013 Posts: 37 | The doctor today said that if there was no proof of cancer anywhere but my tongue that it would be surgery only and no chemo/radiation. Do doctors opinions on how to treat Stage 1 cancer vary that greatly?
Lori, age 30 (HPV-, non-drinker, non-smoker, non-tobacoo user)
Dx 3/18/13 - T1N0M0 SCC L.Tongue
Tx 4/4/13 - Partial glossectomy (no rad/no chemo).
8/8/13 - Thyroid FNA - benign nodule
12/20/13 - Tongue Biopsy - Mild hyperkeratotic dysplasia
12/26/13 - Lymph FNA - benign (dx Cervical lymphadenopathy)
3/17/14 - Tongue Biopsy - normal tissue
5/5/14 - Tongue Biopsy - (awaiting results)
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Las3645 -
I think the most important thing is to be sure you have access to a medical team, not just a single doctor. Have you had a CT or a PET scan yet? How can the doctor know the cancer hasn't spread without a full set of diagnostic tests? Things are going to get crazy and scary but remember, you are an individual and deserve to be treated as one. Ask questions and press for answers if you aren't satisfied. For starters, ask the doc if opinions on how to Treat Stage 1 cancer vary that greatly, okay?
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Mar 2013 Posts: 37 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2013 Posts: 37 | I go in for a CT tomorrow. So we have another appointment Thursday to go over CT, chest x-ray, jaw x-ray, and a physical. Keep it coming thanks.
Lori, age 30 (HPV-, non-drinker, non-smoker, non-tobacoo user)
Dx 3/18/13 - T1N0M0 SCC L.Tongue
Tx 4/4/13 - Partial glossectomy (no rad/no chemo).
8/8/13 - Thyroid FNA - benign nodule
12/20/13 - Tongue Biopsy - Mild hyperkeratotic dysplasia
12/26/13 - Lymph FNA - benign (dx Cervical lymphadenopathy)
3/17/14 - Tongue Biopsy - normal tissue
5/5/14 - Tongue Biopsy - (awaiting results)
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Check this document as it is regarded as a key reference guide for describing staging and standard of care treatment options.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Mar 2013 Posts: 37 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2013 Posts: 37 |
Lori, age 30 (HPV-, non-drinker, non-smoker, non-tobacoo user)
Dx 3/18/13 - T1N0M0 SCC L.Tongue
Tx 4/4/13 - Partial glossectomy (no rad/no chemo).
8/8/13 - Thyroid FNA - benign nodule
12/20/13 - Tongue Biopsy - Mild hyperkeratotic dysplasia
12/26/13 - Lymph FNA - benign (dx Cervical lymphadenopathy)
3/17/14 - Tongue Biopsy - normal tissue
5/5/14 - Tongue Biopsy - (awaiting results)
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