#73940 05-02-2008 01:31 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Yesterday was a real roller coaster ride for me and my daughter, Amy. We met with my doctor first and he told us that the areas were hard to reach areas and he didn't feel that operating on radiatied tissue would be successful, so surgery was out. He then told us that we were no longer looking for a cure but simply to control and maintain this cancer. He said chemo would give me a 60% chance of getting rid of the new areas but that they would eventually come back.............then I'd get more chemo, and so on, like a cycle. Amy took this really hard, it's the one visit I wish I had gone to alone. We gathered ourselves and went downstairs to have the biopsy's done on these areas. Holding my neck still for so long for the sonogram part was the worst for me, the needles weren't all that bad. There were two pathologists in the room with their microscopes to make sure the techs got a good speciman. Also, the head doc in there obviously had a lengthy background in pathology as she also kept looking at the specimans under the microscope and on the ultrasound. She even decided to biopsy an additional area. She told us that none of the specimans they looked at had any cancer in them. They looked at 1/3 of the speciman, the other 2/3 will be sent to the lab. She also told me that from looking at the ultrsound, the areas didn't look like cancer but rather looked like reactice lymph nodes and scar tissue around my thyroid.
Has anyone else had this happen to them? Of course we're praying desperately that she's right but remain prepared in case she's not. But how great would that be if she's correct!
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Minnie,
I have had you in mind very much this week. Please G-d, the results should be only scar tissue. Don't forget "it isn't cancer until the pathologist says it is." If G-d forbid some tissue does show unwanted results and you have to ondergo long term chemo I can tell you that it is as the doctor says "containable." My youngest sister has been on chemo for a very aggressive breast cancer w mets for 4 years and it has been contained. Original spots have gone and others have appeared but not in the same locations. She was even c free for a while a few months ago. My prayers are with you and your family.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Praying, Praying, Praying Minnie...
Hugs, Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Minnie,
My heart just dropped a foot when I read the first half of your post. Hopefully he is wrong and the path report will be clean.
That said, why no surgery on radiated skin? If I can have a total laryngectony and neck dissection on 4 year out radiated skin, why can't they remove your nodes if they are cancerous? Also they are now doing neck dissections AFTER radiation so I'm confused. I got the same line from the vascular guy about my caraotid artery. Maybe another doctor at Johns Hopkins would do it. Actually, now that I think of it Marlene (MarLIz) also had the same surgery I did several years after radiation.
Here's hoping that the doc was wrong and the report comes back clean. Then you won't have to think about either surgery or chemo.
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
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Minnie- My husband also had suspicious tissue post radiation that turned up negative. I'm praying hard that this is the case for all your specimens. I'm sure your daughter was glad she was there even if things were scary for her. She seems like quite a young lady and is probably stronger than you think. If she is anything like mine, she would have known something was wrong even if you didn't tell her. Daughters can be like that especially if she is so close to you. Hang in there!
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Candles and prayers for you and your family
Sunshine.. love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
| | | | | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Thinking of you and your family, Minnie. Positive thoughts from me.
Love and light from Helen
RHTonsil SCC Stage IV tx completed May 03
| | | | | 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 | Man I hope the other 2/3rds are clear!!!
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: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | I feel a collective RUSH of hope and prayers that those specimens are clear, clear, clear, Minnie! JaneP
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Minnie,
sounds like the doc should have waited to tell you his thoughts until after thresults of the biopsies were in.
My prayers and thoughts are with you and I am hoping that you will be posting good news soon.
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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