| Joined: Jan 2010 Posts: 13 Member | OP Member Joined: Jan 2010 Posts: 13 | Hi, As you can see by my signature we are new to this journey. I am very scared but trying to stay positive for my husband and kids - we have a 13 yo daughter and 12 yo son. Have bought some books but this forum has already been priceless in the information I've found and the questions I've already learned to ask. Thank you all so much for this forum!
Hubby woke up to a large, painless lump in L neck on the 5th of Dec - when two rounds of antibiotics did nothing our GP (who has been wonderful) referred him to an ENT with CT scan. ENT had a PET done Xmas Eve morning. Pet shows clear below the neck - spot on left BOT with very small mets to R neck and large area on L neck. L ND done 7 Jan - 31 nodes examined, 5 with mets, largest mets 6.4cm. Positive for extracapsular invasion (invasion of skeletal muscle and soft tissue). Positive for blood vessel invasion. They had planned to do Bilateral ND, but spent 7 hours getting everything they could on the L side. Removed the sternocloidalmastoid muscle & jugular vein, but there is infiltration in the wall of the carotid artery.
I see on here many talk about the need for a second opinion, but we were referred immediately to Siteman Cancer Center and we have so far been very comfortable with what they have said and done. RO is a bit short but we don't have to like her - just trust her and I do. Any opinions on this are welcome.
We meet with the MO on Tuesday so any info or questions I welcome - I see some have had IC before starting concurrent but so far that is not the plan as I know it. He gets fitted with the mask/simulation on 25 Jan.
Seeing a dentist tomorrow to make sure dental issues are all taken care of. He goes into hosital on Thurs for g-tube placement. As a nurse I am fairly comfortable with taking care of it and teaching him about it - and am prepared to sit on him and pour nutrition/fluids down him if needed. His pet name for me is Nurse Ratched - hence my username.
Thanks to this forum, we've already been back to the GP, gotten him on a low dose antidepressant, got a script for xanax, and she said all we need to do is call her if we need anything else to avoid another appointment and co-pay.
Any advise or extra information anyone can give I appreciate!
Thanks, Shelly
Caregiver/wife to Mike, age 48 used chewing tobacco - quit SCC BOT T2N3M0 Diagnosed Dec 29, 09 HPV+ L ND Jan 7 removed 31 nodes, 6 positive Bilat mets neck Siteman Cancer Center Port in Jan 27, Peg in Mar 3 IC 28 Jan & 18 Feb - TPF CRT Cisplatin x3 start March 10th
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Shelly,
I agree with you on the RO. You don't have to like them, just trust they are the best professional for you. My RO is great and very personable, my ENT not so much. I do feel my ENT is good at his job and has given me great care but he's not a warm and fuzzy type of guy. OK with me though, this is not about making friends.
Good thing your a nurse. It will give you a leg up when dealing with the medical system.
Kelly
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Hi, Shelly,
I am so sorry that you and your family will be making this very tough journey. While there are a lot of different opinions on a variety of concerns on this website, the one thing that matters is that you and Mike are comfortable with the Cancer Center, doctors and caregivers. While oral cancers can be similar, no two people are alike and the plan of care can vary.
As a nurse, I think you have an upper hand. Take advantage of it. Mike's in great hands.
For me, the stuff that is hard to predict is the emotional fallout. This group has been a real lifeline for me. No real advice here just wanted to welcome you to our group.
Hang in there! 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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Shelly
Loved One Flew over the Cuckoo's Nest, both the book and the 1975 movie. Your husband better be careful about a self fulfilling prophecy: [quote] Nurse Ratched: If Mr. McMurphy doesn't want to take his medication orally, I'm sure we can arrange that he can have it some other way. But I don't think that he would like it. [McMurphy turns around to see Harding smiling at him] McMurphy: Heh, YOU'D like it, wouldn't you? [to Harding, regarding the pills] McMurphy: Here, give it to me.[/quote] You are way ahead of most new posters here but I would be remiss if I warn you about a medical Catch22 - no preTX thyroid level test, no TX once the radiation fries the thyroid. Here's my spiel [quote]Insist on a TSH level blood test for thyroid so you have a pre-TX baseline on what is normal. Radiation very often damages the thyroid and leaves the patient cold and weak yet because there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 or the most advanced ones in tune with the 21st Century, 3.0 as the highest acceptable level, it is very very hard to get a doctor to prescribe thyroid medication without pre TX baseline. I am a personal example since before TX, I had a TSH of 1.6 and after TX it shot up to 4.3 but no doctor would help me these last two years until I discovered blood tests done by a cardiologist that I got the results from the day after finding out I had cancer so I had paid no attention to the 1.6 TSH. With that, I have finally been started on one little pill that my endocrinologist thinks will bring back both energy and warmth. I hope you never need the results of this pre TX test Disclaimer: I have a degree of Doctor of Law, NOT Medicine[/quote] Keep the Faith 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: Jan 2010 Posts: 13 Member | OP Member Joined: Jan 2010 Posts: 13 | I will have to rent the movie and let my dh watch it so he can get a reminder of those "alternate" medication routes. Gotta keep our sense of humor somehow. Thanks to your spiels on here in other posts, I have already obtained a copy of his blood work done by our GP in early Dec and confirmed TSH was done.
You are truly an inspiration and wealth of knowledge. Bless you, Shelly
Caregiver/wife to Mike, age 48 used chewing tobacco - quit SCC BOT T2N3M0 Diagnosed Dec 29, 09 HPV+ L ND Jan 7 removed 31 nodes, 6 positive Bilat mets neck Siteman Cancer Center Port in Jan 27, Peg in Mar 3 IC 28 Jan & 18 Feb - TPF CRT Cisplatin x3 start March 10th
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Good luck Shelly. We will be here 24/7 to help you anyway we can.
I too found mine as a painless lump in my neck and I was also BOT primary and one of my first cancer docs (I saw 5) also tried antibiotics before being Dx'ed for cancer but his nodal involvement was far greater than mine.
Calories and hydration are extremely important throughout his Tx and his recovery but also keep him swallowing every day to hopefully avoid post Tx swallowing issues.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Hi Shelly, Sorry you have to be here but WELCOME. My husband's cancer presented almost identical to your husbands'. My husband woke up the week before Christmas last year (2008) with a non-painful lump in his left neck (4 cm malignant lymph node) and no other symptoms at all. His primary was also the base of tongue. We are almost a year ahead of you and your husband on this long........road. Treatment is tough and brutal but doable. My husband is doing really well and life is good. You have found a great place for support and information from a lot of patients and caregivers who have traveled similar paths. Your husband is lucky to have his #1 caregiver also be a nurse. Best wishes.
Last edited by slim; 01-18-2010 08:20 AM. Reason: spelling
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Aug 2005 Posts: 307 | Welcome Shelly from another Shelley! Sorry you have to be here but you have found the best place for encouragement and support. As the others have said, the treatment can be pretty brutal, but Mike can do it. He has to, there is no other option. Please keep us posted....we all care.
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | Joined: Jan 2010 Posts: 15 Member | Member Joined: Jan 2010 Posts: 15 | Welcome, Shelly, although under these circumstances. I am at about the same place as your husband. Had the lump in my neck removed and primary was found through subsequent surgery to be in my right tonsil. I went to the dentist today for thorough exam - will need to go back tomorrow for a cleaning and the extraction of a molar. Will meet with the RO on Wed to schedule concurrent rad (35X) and chemo (3X cisplatin). PEG surgery is set for 1/29.
It is so fortunate for Mike that you are a nurse. You seem pretty versed in all the 'lingo' - I was dx'd on 12/15 and had no idea of all of the terminology. I love your sense of humor in the face of this terrible situation you find yourself in. I don't have any advice, being a new cancer patient myself, just wanted to welcome you.
Chris
BTW - CHARM, I wrote a note to ask the RO on Weds about the baseline THC - thanks so much!
SCC Right Tonsil (Stage 4 T1N2bM0). Surgery to remove lump in neck on 12/10/09; SCC dx'd 12/15/09; surgery to remove tonsils and biopsy done on 12/29/09. Right tonsil found to be primary; PEG surgery 1/29/10. Will begin TX-35 rads and 3 chemo (cisplatin) on 2/8/10.
| | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | welcome shelly! that is one of the things i love about this site is that someone is always available 24/7! u will travel a long, tough road as caregiver but there is a light at the end of the tunnel. best of luck!
Teresa ----------- CG to ANDY. Nasopharyngeal Carcinoma (NPC) T2N2cMxG4 stage 4. 43 @ dx 8/31/09 tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3 PORT 9/9/09, PEG 12/07/09 35 IMRT-1/wk carbo 11/30/09-2/3/10 tx stopped due to complications IMRT BOOST 3/08-3/12/10 PET 4/12/10 CLEAR! PEG out 4/14/10
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