#28314 10-24-2006 10:12 AM | Joined: Sep 2006 Posts: 2 Member | OP Member Joined: Sep 2006 Posts: 2 | My sister (40 years old, non-smoker, non-drinker) was diagnosed with a squamous cell carcinoma on her tongue in September. She thought she just had a canker sore but it kept getting bigger so she had it checked and so started the whirlwind. She had surgery to remove the tumor and lymph nodes and got good pathology results--clean margins, clean lymph nodes. The path report stated that the tumor was only .6cm. Her radiation oncologist *really* wants her to have radiation. She is resisting, but may ultimately follow his recommendation (or possibly get a second opinion). This guy seems a little flaky to me and I'm not sure I trust him--he has twice told her she doesn't need rad, then called her on her cell last week to tell her he is "losing sleep over her case". She has never been told what stage she is, but I assume that this is stage I. Her surgeon said he would not recommend rad. Any similar experiences or stories anyone can share? | | |
#28315 10-24-2006 10:58 AM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | When in doubt, go for the second opinion -- at a comprehensive cancer center.
I'd guess that further treatment would depend in part on how invasive the tumor was. In my husband's case, an oral surgeon's initial biopsy of a tiny leukoplakia on his tongue showed moderate dysplasia but warned of a possible "skip effect" and strongly urged further investigation. Since cancer had not yet been diagnosed, he didn't even consider going to a CCC for the excisional biopsy, which got it all and was done by a local ENT.
When that came back with a diagnosis of SCC in situ and a bit superficially invasive (somewhere between stages 0 and 1, we figure), he sent all his records to Johns Hopkins CCC and is now being followed there -- no further treatment recommended at this point.
All the best,
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.
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#28316 10-24-2006 11:31 AM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Why do you assume that it is a stage one? Is there something that we are not hearing that leads you there? 30% of ALL stage 1 patients have an occult met to the lymph nodes and that is the reason that radiation is sometimes called in. You can search the forums for this idea, we've discussed it here a bunch, and lots of people have weighed in from both sides of the argument. If it were the days before IMRT, I might want to sidestep the radiation and take the chance that I was in the lucky 70%. Today I think I would go for it. Personal opinion, from a non doctor.
Clearly we have had people post here that only had the surgery and are still doing well. I would want to have some sense if she came to this through tobacco, as that might lead me to feel stronger about having radiation, as the issue of field carcinogenisis comes into play. But the 30% issue is a cold, peer reviewed, published fact. And those in that percentage don't know they are there for at least 18 months in most cases, until that micro met that is not visible on a scan today, rears its ugly head as what the doctors will call (wrongly) a recurrence.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#28317 10-24-2006 12:47 PM | 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 | You need more opinions. Listen to Brian.
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.
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#28318 10-24-2006 02:58 PM | Joined: Sep 2006 Posts: 2 Member | OP Member Joined: Sep 2006 Posts: 2 | Thank you very much for all of your input. I guess I assumed hers was Stage I because of the size of the tumor removed, no evidence of metastasis, no lymph node involvement. I'm going to suggest she talk to more experts and maybe we'll hear the same recommendations, maybe not. We are close to Boston, so good hospitals are not far away. | | |
#28319 10-24-2006 04:23 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Your sister's situation is almost identical to mine. I am one of those that chose no radiation. This was agreed upon by my surgeon and a radiation oncologist at Fox Chase Cancer Center in Phila.. Skipping radiation is a very big decision and one that shouldn't be taken lightly. A second opinion at a CCC is very important.
I would try to find a doc that has conviction in his decision. Your sister's, seems to be unsure of himself. This cetainly does not instil confidence.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#28320 10-24-2006 05:05 PM | Joined: Feb 2004 Posts: 218 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 218 | If you live close to Boston, I'd strongly recommend getting a second opinion at Dana Farber, the comprehensive cancer center there. They have an online form to request this. See http://www.dana-farber.org/pat/becoming/second/ It would be very helpful to know why your sister's ENT told her twice she didn't need radiation and then changed his/her mind. Should your sister decide to have radiation, you should move relatively quickly to get things in place. It often takes several weeks for the preparatory stages to be completed and a mask prepared (if she'll need that). My radiation oncologist (at Mass General) told me that it is optimal for radiation to start no later than six weeks after surgery. - Sheldon
Dx 1/29/04, SCC, T2N0M0 Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions) Dx 3/15/2016, SCC, pT1NX Tx 3/29/16 Surgery
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#28321 10-25-2006 02:00 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | I would definitely get a second opinion at Dana Farber. Brian's right that there's a 30% chance of mets to her lymph nodes that won't show up on imaging tests. At the very least they may recommend neck dissection surgery to test the nodes directly before coming to a conclusion about whether you need radaition or not.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#28322 10-25-2006 06:45 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | I definitely agree with the recommendations to get to a CCC (such as Dana Farber, since you're close to Boston). Since your sister has gotten some conflicting advice, it really would make sense for her to be seen by an experienced head and neck cancer team who can come to a consensus about what's the best approach in her case.
I was 39 and a non-smoker/social drinker when I was diagnosed. Much of my treatment plan was developed at Dana Farber (along with a couple of doctors from affiliated hospitals) and they never put me in a position of having to sort out conflicting recommendations. The team obviously discussed the pros and cons of each aspect among themselves and then got back to me with their collective advice, along with good explanations of how they formed their opinions.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#28323 10-25-2006 10:06 AM | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Mar 2003 Posts: 251 | From your original post, it sounds like your sister had a neck dissection to remove lymph nodes along with her tongue surgery? If so, seems like the diagnosis of no lymph node involvement comes from that pathology, not from imaging. Brian, does that 30% statistic still apply if this is the case?
Anita
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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