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#192801 07-30-2016 12:22 PM
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Olwen Offline OP
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My partner Fred had a small SCC lesion removed from his tongue last December. They told us it was all removed but they prefer a wider margin so at the end of January it was resectioned and only scar tissue found.

At the follow-up appointment the surgeon felt his neck and found nothing, but a few weeks later Fred felt a small lump -- not much bigger than a pea. He raised this with the surgeon at a follow-up in mid June, and a CT scan and rine needle aspiration were scheduled. I was present when the FNA was done and observed that to my untrained eye there seemed to be a number of small lumps.As the surgeon is not based in our town it was agreed that he would phone us to discuss the results, which he did not do.

We did however get a copy of a letter to a larger centre advising metastatic SCC and suggesting he go to an MDM (I had to Google that)l. We had a phone call about an appointment a week before it happened. We are eligible for travel assistance and when I phoned th travel co-ordinator she said we were expected to drive. It took me around 5 ous each way to drive. (My partner doesn't have a license)

We drove down the day before and stayed at my sister's place overnight. Then we showed up for the 10 am meeting.

First we met a doctor who felt the lumps and looked down Fred's throat with a scope; then we met the cancer co-ordinator who showed us the meeting room and asked us to wait in the corridor. Medical types arrived, and morning tea went in. We waited, and waited, and waited. We gradually became aware other people waiting were there for the same meeting. People were called in, and came out and their treatment was discussed with them in the corridor. One was having an eye removed, another all his teeth.

Finally after 1pm medical people started to leave, and we were called into an office. Their were 2 doctors present. My partner says they were a radiologist and chemo expert.

We were told that there was also a lump in his chest and would receive palliative care only. He could have painkillers and nursing care. He doesn't actually feel any sicker than normal. The chemo guy said he could have chemo but it's not a lot of use. They asked if we were going home that day. Altogether we were in that meeting less that 10 minutes. And then had a difficult drive home. I don't know how I didn't drive off the road.

Fred had a CT scan for chest pain about April. They didn't find a lump in his chest (or anything else then). I am so confused that the tiny lumps in his neck, and a very recent one in his chest are untreatable. And I feel abused by the way we and other patients were treated at the meeting.

Last edited by Olwen; 07-30-2016 12:24 PM.

Partner of Fred, DOB April, 1947

T1 SCC removed from side of tongue near base early Dec 2915
Resection end Jan 2016
Small lump on neck found Jun 2016
CT scan and FNA Jul 2016
Multi disciplinary meeting 27 Jul 2016, advised palliative care only.
#192802 07-30-2016 12:43 PM
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Welcome to OCF! Im so sorry to read about your partners diagnosis.

Have you gone for any other opinions? Here in the US there are comprehensive cancer centers where the patient meets with the tumor board (all the specialists work together to get a diagnosis using a team based approach). I dont know what MDM is. Here in the US there are new chemos that work with the patients own immune system. Its called opdivo or nivolumab. I dont know what the availability is in other countries but its been fast tracked here in the US to get it approved by the FDA. I would certainly ask about this and also about getting another opinion at a top cancer center. We do have some members from NZ so hopefully one or more will check in and respond to your post.

Best wishes with everything!!!

Last edited by gmcraft; 07-30-2016 02:28 PM.

Christine
SCC 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 smile
Olwen #192803 07-30-2016 12:56 PM
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Posts: 3
Olwen Offline OP
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Opdivo and Keytrudin are funded for melanoma only AFAIK. The MDM would be similar to your tumour board. We were told Christchurch, where we went offered the best expertise. We are in the public health system, so asking for other opinions is difficult. Our only income is National Super (a state pension)


Partner of Fred, DOB April, 1947

T1 SCC removed from side of tongue near base early Dec 2915
Resection end Jan 2016
Small lump on neck found Jun 2016
CT scan and FNA Jul 2016
Multi disciplinary meeting 27 Jul 2016, advised palliative care only.
Olwen #192804 07-31-2016 12:24 AM
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Posts: 1,024
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Hello Olwen, my name is Tammy and I live in Whangarei.
I am so sorry to hear of this awful experience you have had in our health system.
There will be a Cancer Nurse Specialist attached to the Hospital where your Multi Disciplinary Meeting ( MDM ) was held. If I was you I would be phoning her tomorrow. If you ring the hospital and ask to be put through the to the Head&Neck CNS ( clinical nurse specialist ) you should get the correct person.
I understand your anguish. You have not been treated with courtesy and respect.
Even the Travel Assistance Coordinator should have arranged accomodation for you prior to your appointment.
You do need to discuss this further . You need to understand fully your Partners diagnosis, staging and what treatment options are available.
My Husband had his recurrence treated in the private sector in Auckland. If you decide to seek another opinion I highly recommend Dr Rajan Patel from Auckland Head and Neck Specialists. 09-6302920
Email: [email protected]
Perhaps your Dr could email/fax all your Partners details and scans for them to look at.?
There is an online support group recently started up in NZ which you can join on FaceBook. Head and Neck Cancer Support.
They have an online page ; www:/headandnecknetwork.blogspot.co.nz

Please join us at either of these support locations and we will try to help/support you. You could also PM me on this site.

I so remember that utter devastation after the MDM, I too had the thought that if I drove at high speed into a large tree it would all be over and we wouldn't have to go through this. I'm glad you too did not do this.

Here for you, 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!
Olwen #192805 07-31-2016 03:01 AM
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Olwen Offline OP
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I'm in Blenheim and the MDM was in ChCh. We'll be seen again at Blenheim or Nelson. We should be seeing the ENT surgeon who comes from Nelson again, and have been referred to the cancer nurse at Blenheim. Also have a GP appointment on Tuesday. We are not in a position to pay for treatment at the moment.


Partner of Fred, DOB April, 1947

T1 SCC removed from side of tongue near base early Dec 2915
Resection end Jan 2016
Small lump on neck found Jun 2016
CT scan and FNA Jul 2016
Multi disciplinary meeting 27 Jul 2016, advised palliative care only.
Olwen #192806 07-31-2016 08:47 AM
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Hi Olwen,

I am sorry you have been given such distressing news. One possibility you could investigate is clinical trials. Is it possible for you to call the Cancer Nurse Specialist at the Christ Church hospital and let them know that you are interested in clinical trials? These trials are free and your partner will continue to receive medical attention.

Keeping you both in my thoughts.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Olwen #192808 08-01-2016 07:11 AM
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Hi Olwen,
I hope your next Dr. will give you better options for treatment. If not, I would be on the phone to Bristol Myers Squibb, and to Merck. They are the manufacturers of the newest immunotherapy drugs.(Opdivo and Keytruda) I dont know how it works in New Zealand, but there are many cases when the drug company will allow you to have the drug under a "compassionate care" scenario. You may need to get your oncologist to speak to them as well regarding this......so even though it has not been officially approved for head/neck cancer, it seems that it can be prescribed off-label, at least it is being done so here in U.S. So keep that in mind.....hoping for the very best for you and your partner.


Caregiver to husband
1998 BOT SCC surgery/rads/chemo
1999 lung met, resected
2000 lung met, resected
2000 Cisplatin /5-FU
NED 14 years
10/14 BOT new primary
10-12/14 reirradiation Proton/ carbo/taxol
NED 6 months
6/15 PET/CT suspicious neck node
7/15 massive throat bleed, ICU ,Trach, PEG
9/15 trach removed. carbo/taxol for lymph mets
1/16. CT radionecrosis hyoid bone and surrounding tissue
4/16 total laryngectomy/bilateral neck dissection
NED 5/16

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