| | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Dear friends,
I am meeting with my MO & RO team at Mass General tomorrow. I'm wondering if any of you that have gone through a recurrence and/or chemo/rads for oropharyngeal cancer have any suggested questions I should ask during the session. My mind is like scrambled eggs right now. I always right things down in "cancer notebook". I know I have to sit down tonight and sort out my questions, but I would greatly appreciate your input.
Thanks so much,
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | 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 | Kerri, I am so very sorry to hear about your recurrence!!!! It is not easy to grasp the thought of being sick again. I hope you are doing ok with your recovery! Rest and know we are all in your corner!!!!
If it were me I would ask a million questions. Here is a start...
Were the margins clear?
Will I need any other treatment?
While I was under did you look for any other areas where cancer could be hiding?
Should I do radiation?
How long do you think my recovery will be?
What Stage was my cancer?
Were there any nodes involved or suspected?
If nodes were taken, how many and did any have cancer?
If nodes were not taken, why not?
How often will my follow up check be?
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Kerri
Ask for a written copy of the pathology report.
Ask if there was any perineural involvement as PNI in an indicator of more aggressive TX and radiation/chemo.
Ask all of Christine's questions.
Good luck
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Sep 2009 Posts: 177 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 177 | Kerri, I am so sorry this is happening. Keep in touch. I will keep you and your family in my thoughts and prayers.
Wendy
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear
| | | | | 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 | I thought of another one. I dont know how common this is but I asked my docs. Ask if it is the same kind of cancer (SCC).
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: 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 | I'm so sorry to hear this Kerri.
We have had an oropharyngeal recurrence but our circumstances are completely different to you.
You did not have radiation the first round so I'm guessing that this will be your treatment modality this time round, together with chemo.
You should ask about the options with chemo. What drug, what frequency, what side effects.
If you are wanting more children you may want to ask about options such as egg freezing prior to chemo. Just a thought.
One day at a time Kerri,
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: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Thank you, Tammy. I've compiled some questions for tomorrow. I know more will come up, but I've seen this team before and they are quite excellent.
You bring up a good point about the possibility of having more kids, but we have been fortunate to have 2 wonderful children, ages 3 and 1 year old. I just want to be able to see them grow up and spend a lifetime with my husband, whom I just adore. We have had nearly 6 wonderful years together, I want many more to come!
Last edited by Kerri; 08-08-2012 07:22 PM. Reason: grammar
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | 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 | Definately ask about the HPV factor that will determine if this is a true recurrence or a second cancer. Hugs! I hate this! 
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: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Dan and I went to the team meeting yesterday. It was a long day, but I know these doctors are great, as I have seen them a couple of times before with round 1. The final details of the path report are not ready yet, but it is definitely SCC of the left tonsil. They seem to think that it is a second primary tumour. They said whether or not it's HPV+ is an academic question, because the status would not affect the treatment plan. My MO explained that some clinical trials are using lower doses of treatment when it comes to HPV+ tumours, but she doesn't recommend this as it has not yet been studied enough. I have a PET/CT on Monday and I'm hoping for good news on that in that it hasn't spread to my lungs. I just don't see how something that has been watched so closely could have spread to my lungs. As I understand it, if that is the case, palliative care is all that can be done. So, the treatment plan is to let my tonsillectomy surgery heal a bit more and begin treatment in a few weeks. In the meantime, I get my radiation mask made and do a simulation. I will also be getting a port, since my veins suck. They will continuously assess my need for a PEG. The team is recommending 35 rad treatments, with chemo once a week using carboplatin and taxol. Any input from you guys would be much appreciated. I feel confident in the team. I just need a little bit of good luck. I need to see my kids grow up spend a lifetime with my husband, my best friend.
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: May 2012 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2012 Posts: 114 | It sounds like you are in good hands, Kerri. I'm so sorry you are facing this beast again You have so many reasons to fight like hell though, and I'm confident you will. I hope your PET comes out ok! Will be wishing you all the good luck in the world.
Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
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