| Joined: Jun 2010 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2010 Posts: 38 | I just had my second PET in 6 months since my latest treatment ended in February. A 1 cm low left axia lymph node had shown up. It has not changed in size but SUV is now 5.4, up from 2 three months ago.
The onclology,radiology and surgeon all concur it's needle biopsy time. I have not had good results with prior FNA as they have always come back negative the first time or two and did not show positive till much later when conditions were much worse. If it is negative, they will just watch for another 3 months until the next PET and I am not comfortable with this.
I have been battling since 2008 and I am running out of treatment options. I have had chemotherapy 3 times, radiation to both sides of my neck and clavicular area, re-irradiation, plus brachytherapy to my tongue.
My latest PET scan indicated all prior surgical areas to be fine! It seems I take care of one area and then it is fine.
I guess I am asking what others have done. My research on here inicated almost all others who have had a left armpit node did turn out to be positive, but there wasn't much posted in the way of treatnment and outcomes.
I am concerned with a few things: First, needle tracking is what happened with my friend Caco's Father. Can I stir it up if it is encapsulated? Also, since the size has not increased, but the SUV did, do I act immediately? I was hoping a doctor would remove just that node as the biopsy instead of the needle biopsy, but they explained they would take many nodes instead of just this one, and I run the risk of lymphedema in my left arm and I am left hand dominant. My other arm is not as it was since the graft and artery was taken for my tongue surgery. Experience tell me to expect follow up treatment of surgery, chemo, radiation or both if it comes back positive.
I guess it is time to realize now that this will no longer be considered curable.
I realize I am putting the cart before the horse, but I need to try and prepare a game plan of options. You see, I just returned to work a month after an 8 month absence from the last treatment and I know they won't hold my job for me any longer if I go out again which equates to no more insurance. And I have a wonderful Fiance who just asked me to marry him no matter what! His health insurance will put us financially ruined and I still owe thousands of dollars from prior treatments even with hospital reductions. We began making wedding plans. We chose a date in June and I have a second hand dress. I am trying to stay as possitive as possible. This is so unfair.....
Thank you for any advice or suggestions.
I have been having trouble posting this and also I was not able to update my signature. I had the total laryngectomy last November.
'08 SCC Rt tongue,part glossect. '09 Rt neck dissect, 3 Cisplatin, 35 rad. Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue. Oct '12 SCC prev stoma site. SCC inside trachea. Nov '12 total larengectomy, addl neck disect, pec flap Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Cindy,
It is so difficult reading your post. You are absolutely right...it just isn't fair! I am so sorry to hear the latest news. I would gladly trade places with you if it was possible. I have lived a full life and have no regrets and nothing left I want to do. Unfortunately, it isn't quite so easy.
Try to not get ahead of yourself. Let things unfold before you change much in your life. In my case, cancer coming back has not been a worry although I now have multiple terminal diagnoses...all from radiation damage. I could sit around and wonder which one will take me first but I try to just keep on living.
My family doctors did not want me to have a FNAB for a lymph node under my chin that has been cooking for 2 years now. I can't do any more PET scans because of muscle twitching head to toe. I had 4 specimens removed and they all came back negative. I don't think I will be doing any more scans or biopsies at this point.
My thoughts and prayers for you.
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Cindy, I did change your signature to show the 11/12 total larengectomy.
Im so very sorry you are going thru any of this. Its been a never ending battle of one thing after another for you.
Im hoping your docs can do surgery to remove several lymph nodes and that would be the end of this. I know you are concerned about future lymphedema, but the most important thing is to get rid of the cancer before it spreads. The surgeon would probably take many nodes, checking them as they go for cancer. After they get several clear ones they would stop removing them and leave the rest alone.
Im still amazed at your return to work without being able to speak. Your drive and determination has gotten you this far. If anyone can get thru another procedure its you.
Best wishes with everything!!! 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 | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2011 Posts: 269 | Your fianc� sure knows the meaning of "in sickness and in health." You got a good one there! : ) Praying all the best wishes for you.
Nancy (53 at dx) Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs 7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo. 5/29/13 - Found primary 7/3/13 - TORS 7/8/13 - Emergency Surgery/Blood vessel burst in throat 8/9/13 - Peg in 9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck 10/14/13 - Radiation ended! 11/12/13 - PEG out!
| | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2011 Posts: 269 | hi cindy, your fiance certainly knows the meaning of "in sickness and in health." you got a good one there! praying all the best wishes for you.
Nancy (53 at dx) Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs 7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo. 5/29/13 - Found primary 7/3/13 - TORS 7/8/13 - Emergency Surgery/Blood vessel burst in throat 8/9/13 - Peg in 9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck 10/14/13 - Radiation ended! 11/12/13 - PEG out!
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Hi Cindy,
You've been thru way too much already, and I agree this just isn't fair.
The node may not be cancer, but you know the only way to confirm or rule out is a biopsy. I understand your concerns and it is a tough decision to make. Perhaps seek out another opinion at a different hospital?
IF it is cancer, it is probably better to remove it now than waiting.
I've been to a number of different doctors and hospitals, and at times it was suggested that I wait and see and retest in 3 months. That was really tough, but I did it and the Pet Scan showed there was nothing. I truly hope that is what happens in your case.
Your finance sounds like a gem. Use him for support and discuss your options with him. Your OCF family is here for you also.
Keeping you in my thoughts and prayers. (((HUGS)))
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Jun 2011 Posts: 188 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2011 Posts: 188 |
Caco CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Hi Cindy, Years ago I had 3 golf ball sized lymph nodes removed from my left armpit. Short story is they said I had lymphoma. One biopsy in my clavicle area came back negative. A few months later I still didn't feel well so they did more Cts only to have it look worse. Did a PET and said it was stage IV so they removed those nodes. They all came back negative too. After that I said leave me alone! Anyway, all that to say I do have some lymphedema in my left arm, but it's not too bad and only flares up now and then. Good luck with this. Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Jun 2010 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2010 Posts: 38 | Thank you everyone. I had a diagnostic mammography and ultrasound and it was determined to not be breast cancer related. It appears to me the left side is the path this has chosen to drain as I had a node at the left clavicular area that we radiated. Nothing shows on the PET, it is gone now. I am working with my CCC team to try and convince them to remove this and biopsy instead of needle biopsy. With the way my body has reacted to this cancer I have had too many false negatives and want to be over and done with this while it is still small and insignificant. I think after awhile we need to reflect and listen to what our bodies and intuitions tell us even though we have wonderful doctors. I still welcome any other thoughts or suggestions from anyone. The saga continues.....
'08 SCC Rt tongue,part glossect. '09 Rt neck dissect, 3 Cisplatin, 35 rad. Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue. Oct '12 SCC prev stoma site. SCC inside trachea. Nov '12 total larengectomy, addl neck disect, pec flap Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | So far good news. I think I would rather do a FNAB first, being less invasive, and then a surgical biopsy if inconclusive. Each one's experience is different, and I had 6 FNAB, which were accurate. The risk is low, and adverse spread is rare, and cases that were, were with large core needle biopsy. Good luck.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Cindy push for what you feel works for you.... Hugs
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Cindy,
I agree with Cheryl - do what feels right to you. You've been through so much in the past few years and that stress from constant worry isn't good.
Did your doctors say why they don't want to do the surgical biopsy?
I'm glad the mammography came back OK!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2013 Posts: 144 | Cindy721, I am sorry to hear this news. maybe you will be lucky and the armpit will come back neg. I just today (9-18-13) found out that my RSCC. surgery came back with failed margins. so I know how you feel about the fear and subsequent knowledge of what you don't want to know. I sincerely hope that you will be given what you deserve. And not this terrible nasty evil condition. "May we stroll together or stumble and fall all alone"
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF 3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | Joined: Jun 2010 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2010 Posts: 38 | I am scheduled for surgery to remove this one node for biopsy October 11. I pushed for it and the team was in agreement based upon my history. It will be minimally invasive and they can do a full biopsy. The doctor explained it could be head and neck mets, a weird breast cancer, lymphoma or nothing at all. Sunderwood, I had failed margins previously and I am holding my own after treatment, so don't give give up the ship!
'08 SCC Rt tongue,part glossect. '09 Rt neck dissect, 3 Cisplatin, 35 rad. Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue. Oct '12 SCC prev stoma site. SCC inside trachea. Nov '12 total larengectomy, addl neck disect, pec flap Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yeah Cindy - I am glad you stuck to your guns... best of luck.. It should be a quick recovery. Hopefully it's nothing and all you'll be is relieved and one node lighter. hugs!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jun 2010 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2010 Posts: 38 | Well, I had two axillary nodes removed and both came back SCC mets. PET on Tuesday, decision time Thursday. This will be number 5 for me. The doctor commended me for sticking to my guns and insisting the excisional biopsy be done. Since this hasn't been there that long there was a good chance the FNA B would have been another false negative. You must listen to your instincts!
'08 SCC Rt tongue,part glossect. '09 Rt neck dissect, 3 Cisplatin, 35 rad. Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue. Oct '12 SCC prev stoma site. SCC inside trachea. Nov '12 total larengectomy, addl neck disect, pec flap Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Cindy,
I'm glad you insisted on the biopsy - women's instincts can't be beat! But I was sure hoping you were wrong. Number 5 - this really stinks!
When was your last PET? I know they told me that sooner than 3 months you can run the risk of a false positive.
Praying for you!!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Oh Cindy, I am so sorry to read this. Life is just not fair. But, keep placing one foot after the other. Take one day at a time . Get the PET done. Get the treatment plan and push on. You can do this. Take a deep breath. You can do this. Keeping you in my thoughts and prayers, Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Im very sorry (and surprised) about the latest recurrence!!! Hopefully the surgery you just had took it all out and you can move on.
You know where to find me if you need anything. Keeping you in my prayers always! 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 | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | So glad you stuck to your guns. Hopefully margins are clear and any other nodes have been removed and are clean! Hugs
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jun 2004 Posts: 30 National OC Advocate/Speaker Contributing Member (25+ posts) | National OC Advocate/Speaker Contributing Member (25+ posts) Joined: Jun 2004 Posts: 30 | Cindy, your perseverance is inspirational! You teach us all how to make the best out of a challenging situation: Plan ahead, ask lots of questions, continue to pursue your dreams and don't put anything on hold.
Are you saying that your fiancee's health insurance won't cover you at all? | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | So glad you stuck to our guns! Most of the time our intuitions are right, Sorry about this recurrence. Youve definitely been through a lot. Prayers for you.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jun 2010 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2010 Posts: 38 | Surgery scheduled Nov 5 to remove the rest of the nodes followed by radiation and a chemo cocktail that will last 4 months. The doctor said the recurrence in this area is rare, but can occur. He has only personally known of 2 cases, mine included. Need MRI for shadow on the PET on my liver. Although the doctor said SSC to the liver is so very rare, now I have to wait again for the outcome. If it comes back positive, all surgeries and bets are off at that point.
'08 SCC Rt tongue,part glossect. '09 Rt neck dissect, 3 Cisplatin, 35 rad. Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue. Oct '12 SCC prev stoma site. SCC inside trachea. Nov '12 total larengectomy, addl neck disect, pec flap Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I wouldn't rely specifically on an MRI - since it can pick up other things not cancerous but it's a good place to start hoping it's all clear!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jun 2010 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2010 Posts: 38 | Well, I had axillary node surgery and tally was 4 out of 15 nodes( including first biopsy) along with a piece of tissue that appeared to be where the extra capsular spread was.
I will be heading into my 4th time of chemo and radiation, but since it is not to my head and neck it should not be as devastating.(My hope.)
I have joined the ranks of metastasized cancer now.
They are hopeful that since we caught it early in the lymphs and it was too small to show on any scans that maybe we can put up a roadblock.
My Oncologist submitted for molecular testing. I will make a separate post but don't know too much about it, but I sure will learn so I can talk about it next week with my Oncologist.
If anyone has any information on the subject I sure would be interested to hear from you. Thanks much!
'08 SCC Rt tongue,part glossect. '09 Rt neck dissect, 3 Cisplatin, 35 rad. Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue. Oct '12 SCC prev stoma site. SCC inside trachea. Nov '12 total larengectomy, addl neck disect, pec flap Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Sucks that your back into the rads and chemo, so glad it hasn't spread beyond where you found it - thank god you stuck to your guns and pushed to have it removed!!!!!!!!
I wonder if the molecular testing will determine what it responds best to. It's like a personalized form of chemo! This may be what cocoa pops dad had. I think you're right regarding the radiation. Not sure about the chemo (it depends on what they are giving you - but I think the rads will be easier. My father in law is going through 5 weeks to his lower esophagus right now. He just started week 4 and his only pain is when eating as it's going down. I think since this isn't in a place where you have any external irritation (like food in your mouth etc) it should be much better. The only concern would be skin and burning. But you've already had it once so hopefully you know how your skin reacts and can plan for it.
Hugs... We're here...
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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