| | Joined: Dec 2011 Posts: 18 Member | OP  Member
Joined: Dec 2011 Posts: 18 | Here's the update if you can believe it. I got a call later on Tuesday and was told that I needed a cardiac clearance. Now keep in mind that this is last minute. Got a call on Wednesday morning to see if I can be at the heart center in 1 hour. I live an hour and half away and its downtown Atlanta. There was no way to make it there and they said ok and that I could come in Thursday at noon. I show up and was told that I needed a stress test and that they didn't have any openings or that they hadn't cleared the test for insurance purposes. Either way I didn't get the test. Soooo, they canceled my surgery. I pleaded with them that this cancer is spreading. Right now, I don't know what to expect next. This is the second time that they canceled this surgery. The first being due to my thyroid. I'm beginning to think they just want me to die. They are a reputable hospital but right now I am confused of their intentions. Feeling Betrayed.
Last edited by Sherry F; 05-01-2015 10:03 PM.
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Sorry, sorry, sorry this has happened. Do you have an advocate? Someone who can do some of the ringing or questioning for you? It sounds to me as if you've never had quite enough information and I know that it's exhausting having to battle your own case if you're not feeling well.
I think you can complain about the last minute request for a heart test. I thought all that testing was done when the surgery was scheduled. When will you see your doctor?
Hope everything gets cleared up soon.
Maureen
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | 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 | I'm sorry for your troubles. I needed cardiac clearance several times. One was prior to my neck dissection in 2011, and another before starting chemo in 2013. Although it delays matters, it's in your best interest. The cardiologist gave me clearance after an EKG, and echocardiogram to start chemo since the stress test would be done at a later date, due to scheduling, and after I needed to start treatment in a few days, and agreed to go back. I didn't go back until I finished treatment. Maybe there are other cardiologists in your area that can accommodate you faster.
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 | Scream and make noise - be the Sheaky wheel- I would have had the test paid for it and billed the insurance ... 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: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Sep 2013 Posts: 105 | My thoughts are with you Sherry
Sophie | | | | | Joined: Dec 2011 Posts: 18 Member | | OP Member
Joined: Dec 2011 Posts: 18 | Sorry I haven't posted anything in a while but there was not any new news to report except that my surgery went from May 1st to July 20th. They said that this is the best date they could do. You would think that, considering the hospital that I am going to, could do better than this. OMG, I told them that I was having a sore throat, so they made an appointment with me to see a nurse practitioner that only stuck her finger down my throat and told me that it was not serious. I told her that it had been several months back since I have had a CT scan so how could she tell. I guess my only option is to just try to sit back and wait for this beast to take over. I'm feeling really scared.
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Dec 2012 Posts: 26 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 26 | Hang in there- we are all pulling for you.
SCC Started in the right tonsil they think, T1N2bM1
HPV+
Lots of nodes involved including some near the carotid - didn't come out during neck dissection
Distant Met's - one in the mediastinum, some suspicious stuff in the lungs
Radiation 70 Gy in 35 fraction
Cisplatin - 3
Stereotactic rad to the mediastinum
Clean PET Apr 13
Clean PET Aug 13
Clean PET Dec 13
Clean CT with contrast Mar 14
Clean CT with contrast Sept 14
Clean CT with contrast Feb 15
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | It's psychologically bad for you to have to wait this long. I assume that the doctors think it is medically okay. It's a good sign that the nurse found nothing wrong when she looked at your throat. However, you can't go on like this. You need to ring the hospital and ask to speak to someone, if possible the surgeon or one of his/her staff. I think it's in their code of practice that they must minimise patient distress. They need to make you fully aware of the medical situation you are in. Fine words from me because I was just like you over Christmas. I got my cancer (recurrence) diagnosis from a phone message and assumed I couldn't talk to anyone until the holiday season was over. That three week period was one of the most miserable in my life. Looking back, I can see that there were things I could do. There would have been people on duty in the ENT ward. I could have requested a conversation.
Once you are more fully in the picture, you will feel better. Take all the help you can get: Cancer Society etc.
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | 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 am thinking you need to get your but to another surgeon or CCC... and 8 week wait after a cancer recurrence is too long. I would be freaking and phoning daily. It is NOT okay. Go to someone else who is just as good or better and they should get you in sooner. Call them ask for all your records... and send them on to someone else.
don't cancel the surgery until you have a firm booking. Medically it is NOT okay to wait that long. They are playing with your life.
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: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Sep 2013 Posts: 105 | You are in mine and my husbands thoughts. I agree with Cheryl, you must call and your surgery with at a CCC.
Hopefully you have family who can advocate for you.
Sophie
husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
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