#97200 06-12-2009 01:12 PM | Joined: Jun 2009 Posts: 18 Member | OP Member Joined: Jun 2009 Posts: 18 | My family is currently facing a very difficult decision. My 24 year old sister has had 6 weeks of induction chemo, then modified radical neck dissection and 1/4 of the tongue removed. Our surgeon told us no radiation was necessary. My sister's response to the induction chemo was extremely good. The surgical pathology report was 'negative for tumor' in all areas, minus one slide on the tongue (this section was removed). The MO and RO favor radiation, but "regretfully" because of her age. When the Head and Neck center team (@ MD Anderson) met to discuss the case, they were split 50/50. I understand the logic of doing the radiation. (They are talking of radiating the bilateral neck and tongue). Obviously, we understand the significant side effects and "quality of life" issues that come in the radiation package. The surgeon feels that if there were a recurrence, she could do more surgery and then radiation/chemo. Sister is not ready to jump on the bandwagon for radiation. Any thoughts, advice, experience, particularly with someone so young?
Sister, age 24, dx SCC 3/5/09, Stage IV T3N2M0, HPV-, 6x induction chemo (Cetuximab (Erbitux), Carboplastin, Taxol), 1/4 tongue removed and left modified radical neck dissection 5/14/09, started IMRT 7/7/09, 30tx, finished 8/14/09
| | | | 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 | Tough tough question but I will say this, this cancer is very aggressive especially when the primary is in the tongue.
I did not have any surgery but I did have the concurrent radiation and chemo and I plan to live at least another 20 to 30 years as it runs in my family. I point this out because even at her age I wouldn't find the side affects I acquired from my treatment are limiting at all. Yes my saliva is not 100% but it is close and the same for my taste. My thyroid was fried but a small inexpensive daily pill takes care of that. I have no as in zero physical limitations due to my treatment. Overall I view these very small inconveniences just that as compared to the potential alternatives.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jun 2009 Posts: 18 Member | OP Member Joined: Jun 2009 Posts: 18 | Thanks for the response David. We have had more conversations with the surgeon and medical oncologist the last two days. The surgeon believes she can "salvage" Camille with additional surgery and other options if there is a recurrence. She is also concerned with the 'field effect' and secondary tumors...the possibility of needing to use radiation at a later date. She is also focused on Camille's youth. The medical oncologist is concerned about recurrence from this tumor. He generally takes a pretty conservative stance on things. He agrees that no one wants to radiate a 24 year old, but he favors the radiation. Camille is concerned about radiation side effects not just immediately, but twenty years from now, particularly if there is not a recurrence. Does anyone have any thoughts with young patients with tongue cancer in general? radiation side effects long down the road?
Sister, age 24, dx SCC 3/5/09, Stage IV T3N2M0, HPV-, 6x induction chemo (Cetuximab (Erbitux), Carboplastin, Taxol), 1/4 tongue removed and left modified radical neck dissection 5/14/09, started IMRT 7/7/09, 30tx, finished 8/14/09
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | What does her RO say?
MDA, like all CCC's, uses a team approach so what is the consensus of the team?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Nov 2008 Posts: 72 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2008 Posts: 72 | I sent you an email on this as well....
DX at 23. My DR found 1 mm of cancer in 1 of 37 nodea after neck dissection. Clear margins. He didn't reccomend radiation since there didn't seem to be much spreading and stated that since I was so young and there is a likelyhood that it may reoccur, he did not want to omit the option of radiation later on. I am now facing my 6 month PET scans and there was some things that were worrisome. I may now be going through further treatments. I say hit it head on early!
*Shaylynn* 11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0 12.20.2008 Partial glossectomy & left neck dissection. Clear margins. 6.24.09-Pet Scans show 2 areas of concern 8.5.09-Recurrence-Perotid Gland and swollen node removal 9.29.09 Carboplatin & Taxol x8 Tomo x39 11.19.09 WILL COMPLETE TREATMENTS!
| | | | Joined: Jun 2009 Posts: 18 Member | OP Member Joined: Jun 2009 Posts: 18 | Our team at MD Anderson was never able to give a consensus opinion. But we travelled to two other well known cancer centers to get other opinions. At the end of the day (and over 4000 miles of travel), the overall opinion is to radiate. Despite the risks of radiation (and because this cancer at 24 is just so incredibly aggressive), we feel radiation is the best thing for Camille. She had her first treatment this afternoon (7/7/09). We are gearing up for a long six weeks, but definitely feel like its the best thing. Shay, we will be thinking about you this week as you get more information about whats going on.
Sister, age 24, dx SCC 3/5/09, Stage IV T3N2M0, HPV-, 6x induction chemo (Cetuximab (Erbitux), Carboplastin, Taxol), 1/4 tongue removed and left modified radical neck dissection 5/14/09, started IMRT 7/7/09, 30tx, finished 8/14/09
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Where did she decide to have her treatments? She is so young to have to go through this but her age should help her weather this treatment. Keep us posted on how she is doing.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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