| | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | On 2/5/10 I finished breast cancer treatment. I have symptoms of numbness in my jaw since 11/09 when I finished radiation. An MRI at the time showed nothing but since the symptoms had not gone away another MRI was scheduled. So on Friday, 2/5/20 when my office was celebrating with me that I finished breast cancer treatment, I learned from my head and neck surgeon that I had a tumor on the nerve in my jaw and it was cancer. He was going to the tumor board the next week to determine my treatment. Really ruined the celebration!
We decided to get a second opinion from another area cancer surgeon who looked at the MRI and said yes, you have cancer on the nerve and I want to removed your jaw. He wanted to do a PET scan before he went to the tumor board to see how far the cancer had spread. While we waited for results to come in the first tumor board said they wanted to schedule surgery first week of March and we said we were waiting for the second opinion. It was a long week and a half while we waited for the the PET scan and the results from the second opinion. On the day that we new the tumor board was meeting I recieved a call at work from surgeon number two...PET scan was totally CLEAR! No cancer showed from my hips to the top of my head! He could not explain it, but wanted to repeat the MRI. The next MRI was totally clear too!
All they can say is they don't know why I have numbness, but I do not have cancer on the nerve. Many people and family have been praying for me and I thank God for the miracle in my life!I still have some numbness but I can live with that! I work with 43 people who now are not as scared about hearing the words "you have cancer". It can be beat! Never give up hope and faith! - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Kris
Congratulations on the clear MRI.
It sounds like the first surgeon you went to was looking at another patients MRI or alternatively he REALLY needs to get his eyes checked -- sooner rather than later!!!
I certainly wouldn't be going back to him in a hurry...
Karen
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Kris,
Your experience demonstrates how important a second opinion is when someone tells you it's cancer. Congratulations on your good news!
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Gosh, Kris. Now that is really scary. So happy to hear you are okay, and cancer free!!!!
Julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Kris,
I totally echo Julieann's post. What a nightmare experience that must have been after all you have been through. Glad all is well again.
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: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | All I can say is it is SO important to be your own avvocate and be proactive is finding second opions as soon as possible. I was going to a major northwest cancer treatment for both of my cancers. They had all my records to review before it went to the cancer tumor board. The second opion was at another well know hospital in the city. I wouldn't want my experience to make someone lose trust in their doctor. What I and my family appreciated was a surgeon that called to appologize for a result that he couldn't explain! I am still going to that doctor for scheduled followups.
When you deal with cancer you just need to hold on to your faith and have peace that there is someone in control of the path you take up and down that mountain. My fear was gone this time around and maybe that made the difference. - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Maybe they saw a false positive as happens with Pets??
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | The PET scan was clear. The tumor showed up on the MRI and the radiologist report said it was highly suggestive of cancer. Both surgeons made their diognosis from his report. They didn't give us much hope and one even said I had 1 year to live if I didn't treat the cancer aggresively. This surgeon scheduled the PET to see how far the cancer had spread to see if surgery was even an option at this point. My oncologist after reviewing both sureons reports suggested that they are just used to seeing negative results from head and neck cancers and not survivors. It is nice to prove them wrong!
Even though I have peace about eternal life every extra year I can hug my husband, encourage my youngest through the teenage years and maybe dance at a few more weddings puts a smile on my lop sided face! - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
| | | | | Joined: Sep 2009 Posts: 63 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 63 | Wow Kris, I love your attitude! I want some of that! I have a biopsy tomorrow and I hope it goes as well as your good news. Hoping my PET is a false positive! You put a smile on my face today! Thanx!
Pat
Pat - 62 yr. old -DX 8/29/09 SCC stage III floor of mouth
Lower teeth& bone removed
Port& Peg
Cisplatin x3; Rad 35 - ended 12/21/09
Fox Chase 2nd opinion-mandibulectomy; tracheotomy; left neck dissection; jaw reconstruction 5/13/10; flap failed;new flap 7/13/10; lipo January 2011
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Kris, what great news!!!!! False positives can scare you to death. So glad you are in the clear
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | |
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