One week ago today (Wednesday)my husband, a 45 year old athlete, non smoker, light drinker went to his GP to look at a swollen gland that had been hanging around for about 3 weeks. They sent him off for a CT the same day. ENT the next day (Thursday)and a biopsy. Friday 4pm results of biopsy, SCC - very long weekend. ENT Monday, rooted around again looking for the primary, no luck - referred to oncologist - we saw him last night. Chemo is to start next week. CT showed 3 lymph nodes involved, largest tumor is 3.4cm. PET scan today - they say we'll have results at 4:00 today. Tomorrow we go back to the ENT for random biopsy of mouth, throat - I'm not sure where else. I feel so grateful that we are on the fast track with care but on the other hand it scares me. Oncologist said with the lymph nodes involved he's prob stage 3 - may change if something shows in the PET scan. I feel like the rug has been ripped from underneath me. Please God, let me wake up. Plus I'm so darn mad - how can this be happening? I know I need to stay strong for him and our kids (ages 9 and 14). I've spent the last 7 days reading everything I can get my hands on - respected sites - and it all seems so doom and gloom once there is node involvement. He hasn't read anything - too afraid. And neither one of us have come out and asked any of the doctors "So, what are his chances?" "How long does he have?" Just can't do it - yet.

I know I've rambled on and I apologize. I look for any advice or direction you can give me to help him through this. Thank you to everyone for posting on this site - has been heartwarming, scary, sad but also gives me some hope.

Lisa,

You have a tough road ahead, but what you will find on this site is that it is a road well traveled. You will find many here who started in about the same place as your husband and are still around to help others just getting started.

I know that the best help we can give you at this stage is assisting in making sure you are getting the absolute best care you can get.

Where are you in Texas, and where is your husband being treated?

Kelly

Hi Lisa. First take a deep breath. I was exactly in your shoes 1 year ago today. My husband was diagnosed 1-13-09 with Stage IV "base of tongue" cancer. The ONLY symptom my husband had was a non-painful lump in his neck. That turned out to be a 4cm malignant lymph node. He had a CT Scan which showed thickening tissue at the base of his tongue. The tumor in the base of tongue was the primary. I drove myself crazy "googling" long term survival stats. I lost my mom 2 years ago to Pancreatic Cancer so I unfortunately have been down the cancer road before. Don't drive yourself crazy with the doom and gloom stats. Your husband is a statistic of 1 and there are plenty of people who beat this cancer.

I won't lie to you, both you as the caregiver and your husband are in for a rough journey but this cancer is treatable and cureable. My husband went through 35 daily radiation treatments, 6 weeks of chemo, neck disection and had to have a feeding tube (PEG) placed before treatment began. He is alive, cancer free and doing really well. Please feel to ask any and all questions. You have found a great group of patients and caregivers who are more than willing to help and a wealth of information.

My husband never smoked a day in his life, drank casually, took vitamins every day and ate a well balanced diet.

Good news is that your husband seems to have doctors that are on top of things and got his tests right away. My husband's three doctors - the MO (Medical Oncologist), RO (Radiation Oncologist) and ENT all told him that this cancer has the most brutal treatment out there but we can beat this and cure you. Keep posting and asking questions.

We are in San Antonio. We've talked about MD Anderson in Houston and depending upon the PET results, may take the short trip over. Both the oncologist and ENT come very highly recommended from 2 different and reputable sources. The oncologist works out of the Methodist hospital system. So far we haven't had "treatment" just one doctor visist or test to another for the last week. The chemo next week is scheduled as in patient at Methodist Hospital in San Antonio.

Lisa, we are here for you to ramble to at anytime. Ramble, curse or anything that gets it off your chest. You have to have a place and people to ease the load on your mind. I hate to say this, but welcome to our home and the best of it to you both.

South Texas Oncology and Hematology is the clinic.

Lisa,

MDA is about as good as it gets in treating oral cancer nationally. Some here have traveled hundreds of miles just to be treated there and I considered it myself and I'm in Michigan.

MDA is a Comprehensive Cancer Center (CCC) and that is good as you can get. Given your proximity, I would have them do the second opinion at the very least and very seriously consider them as your primary care facility. They are that good.

Kelly

MD Anderson is the highest rated Cancer facility in the US and 2nd in Otolaryngology (Ear Nose Throat). The best thing you can do for your husband is get him the finest care available to you...after that the only thing you can control is your attitude and your nutrition.

Good luck

Eric

Lisa,

I too have walked this path and I remember all the emotions you are feeling right now.

First off, I can recommend a notebook to keep all of this together. In particular, those plastic sheets that hold business cards. You will have so much paper work and doctors appts and information that each of the docs need. Keep a card from each office in that notebook...you will need to write the information a thousand times. All the reports, information sheets, etc will be where you can find them...use tabs for different categories. It will give you a little sense of control.

Secondly, I recommend that you at least get that second opinion from MDA. Hopefully, they will give you their blessings to receive treatment at home as they are probably familiar with the San Antonio physicians. My Bill was seen at a Comprehensive Cancer Center (Moffitt, Tampa, Fl) for a second opinion and we, with their OK, came home for the chemo and rads...we travel back for checkups, scans, etc.

As Wanda and others have said - you are in for a pretty rough ride but you and hubby will get thru this and this forum and all these people here who have been thru this will help you.

Deb

PET scan wasn't ready at 4:00 - so 9:30 tomorrow morning.

I look at my husband - healthy, strong - my best friend since we were 15, 30 years... - and again, how can he have this when he feels fine. He is ready for the battle. Told me today that he knows that the oncologist is gonna blast him because he's 45, 6'2 and 205... said he saw a gleam in his eye that here was a chance to skew the stats... Hey - thank you all - made it through the day partly because of you all.

Lisa, I remember well the shell shocked feeling, then finding this forum, and trying to catch up and educate myself on what to expect. It is very scary.

Most important right now is a second opinion at a CCC. We felt much better after the team at Dana-Faber concurred with the treatment plan from our local oncology center. I also wanted a second pathology examination (slides from biopsy were sent ahead) and this was included in the consultation.

It will help that your husband is otherwise healthy and strong. That was the case with my husband and he recently said that overall he is happy and grateful that treatment, although extremely difficult, was an option. We're leaving for a cruise next week - there is hope. Lottie

Lisa,
If I were you, and they don't find your husband's primary, put off the start of Induction Chemo and get to MDA Houston for a comprehensive exam and second opinion.

There are NCCN Guidelines that really should be closely followed when there is the possibility of an Occult(Unknown)Primary and the protocol is significantly different than with known Primaries.

http://oralcancerfoundation.org/treatment/pdf/head-and-neck.pdf (look under Occult Primary)

The protocol you mentioned seems somewhat inconsistent and incomplete. There are many steps to be followed before Chemo.

These days a Major CCC can find the Primary for almost all referred cases.

Some of the most comprehensive studies of true Occult(unknown) Primaries has been done by MDA. Some of their recent work has linked HPV to Occult Primaries. They tend to write the book on many of these things.

Forget stats! Those are irrelevant. All that is important to you is your individual case, and trust me - each of us are very different. And back that truck up re node involvement. In 2004 I had nodes involved on left side, and in 2007 had nodes involved on the right side - and guess what - I'm still here!!

One step at a time. Deep breaths. Lean on us, we're here for you.

Donna

Lisa,
I'm also a caregiver and reading your posts brings back so many memories. First of all, as scary as this is, you have so much going for both of you. It sounds like your husband is in great shape and he has you to help him through this ordeal. It might be difficult to believe at this point in time, but you will be so much closer and love each more because of this life changing experience.
You're numb and in shock right now and also very fearful of the unknown. This will be a tough fight for both of you. Being a caregiver is so stressful and there is no one who can do it for you. He will do his treatments and you will take care of him. This might sound odd, but at the time of Richard's treatment, I felt honored to be able to help him. As the wedding vows say, "In sickness and in health." Most people are never really tested as we have all been.
Another thing that is important...don't look at the statistics. Right off the bat, Richard's RO told him that the treatment should cure the cancer and so far all our checkups have been clear. We are back to all our normal activities.. work, hiking, etc. Richard is lucky enough to have tolerated the treatment and healed up pretty quickly.
Lisa, please lean on us. We know what you are going through and can answer all your questions. The more you are informed the better questions you can ask the doctors and the more you'll know about what to expect. Keep posting as you go along and we will all help you. YOU ARE NOT ALONE.. Geri

Lisa, your words also bring back memories to me. In April last year my husband was diagnosed with stage 4 SCC involving most of his tongue, his lymph glands and his jaw bone. He was told by the first set of doctors that they wouldn't operate because it was too extensive. 2nd set of doctors said they would if we wished but it would be major and they didn't think it would make much difference in the end. His treatment was to extend his life but never to cure. The feeling of shock and daze is unbelievable when you hear things like this. I remember being in a supermarket totally dazed, having forgotten even why I was there.

But just so you know you will get through this. I came to this site and I read and read and read. I read blogs, questions, everything I could think of. And if i had a question I couldn't find the answers to I would ask (still do). The guys here on this forum will be the best mates you will ever have. They don't care if you come here to rant, rave, ramble or even cry. They will be here for you with words of comfort and advise. They know and understand because all of us have been in the same place.

Never give up hope and don't listen to statistics. Your husband is a young, healthy man and that will be in his favour very much so. My husband Steve's odds weren't so great when we started treatment but I'm happy to say almost 5 months out of treatment his last scans came back all clear. Everyone is different and most of all positive thoughts and believing that miracles happen will help get you through.

Wendy

Lisa,
Since you are so close, I think a second opinion at MDA is a good idea also, if to do nothing more than confirm the treatment plan.

If you will look at my signature, you will find that I was a stage III with unknown primary 13 years ago and I'm still walking around despite a new occurence 4 years later. The treatment is nasty but doable. You guys can do this. Take a deep breath and keep us posted.

Take care,
Eileen

Lisa,

I love your statement regarding your husband "he is ready for battle". Awesome attitude and exactly the mindset you both need to be in to face this.

In battle, victory normally goes to the side that has the best battle plan. Listen to the resounding advice here and get that second opinion at MDA if only for due dillegence. It may just be the key to his survival.

I relate to your husband in the fact that I felt fine and was in great shape before diagnosed. I think my overall health was the key to making it through the ordeal.

Good luck

Eric

My primary was also a tough one to find. I had to have the exploritory surgery to take samples from different areas of my throat and it turned out to be on the right tonsil. Teh only symptom I had was the lump on my neck. ! doc said stage III, another sad VIa. It's hard to believe they're ready to start chemo already. I was diagnosed dec 22 07, but didn't start any trearment until feb 1 08. Then it was 7 weeks of radiation with concurrent weekly chemo. If he has radiation, his throat may still be swollen from the surgery, as mine was, and the normal position they set him in to fit the mask he will have may make it hard to breathe. That's what happened to me and I really panicked and had to be repositioned and redo the mask.
Anyway, it was a very rough course of treatment and my wife was a wonderful caregiver and thanks in large part to her, here I am 2 years later and still cancer free. Your support and aid at his appointments (take notes, ask questions, keep things organised) should see your husband through this as well. Best of luck.

Finally some good news, I guess, good news is relative. PET scan
shows a 3cm tumor at BOT along with the 3.4cm lymph (Really is interesting how 8 days ago I'd never heard the term squamous let alone had any idea where the jugulodigastric lymph nodes were) - We are meeting again with his oncologist tomorrow for the full treatment plan. Plan at this moment is to admit him to the hospital on Tuesday - mediport and biospy of tongue will be done Tuesday and chemo starts Wednesday. His oncologist left MD Anderson and is an original founder at South Texas Oncology Hematology and we feel very confident in him. His records were shipped today to City of Hope in LA and MD Anderson. My husband's employer has been very supportive. We have been offered the corporate jet to take him wherever we need. They also have a dedicated team of medical professionals that help with choosing doctors, coordinating care etc. We are very blessed with the resources being offered. Based upon the information that comes back to us from City of Hope and MD Anderson - we will decide whether the Tuesday admission will go forward. Wild roller coaster is the closest I can come to explaining the journey so far. I took some time this morning to visit my gp - emotions were getting the best of me - and some people may think it's weak - I did get a prescription to help calm my nerves. I have to say - I haven't cried in over 6 hours so - that's a good thing. I know I will still have bad days - but yesterday was really bad and I can't be that way for either Ken or my kids.

I so appreciate everyone's advice and welcoming spirit. I already know that this forum will be a key piece in making it through this BUT I cannot wait for the clear CT and PET so I can move on to being a motivator and providing answers and advice. Until then, thank you!

Hi Lisa- I think once you start knowing more of the specifics you begin to just put one foot in front of the other and you just go forward with what you have to do. The initial first days are so hard. Its such a shock especially if you are living a healthy lifestyle and feel good and don't fit the statistics.

I am praying that your husband has a full recovery from this cancer and goes into remission permanently.

KATE

Hi Lisa,

Reading your post sure brought back a ton of memories for me. I found this board right after my husband's treatment ended and the people on this board are wonderful! You will get a ton of support and encouragement. Just take it one day at a time. I don't think you're weak at all to get a prescription for your nerves, I think that's smart!

Your husband is young and strong, that's going to help him a lot. You just make sure you take care of yourself too, being a caregiver can be very draining. And you have 2 children too. Are there any family members close by to be able to help? Keep us posted, we are all here for you.

Hugs,

Shelley

Lisa -
You weren't weak but SMART to get something to help YOU get through this.

There are awesome people on this site who will help you through this difficult journey.

Good luck!

Marlene

Hi Lisa. Glad they found the primary. Your husband's diagnosis sounds so much like my husbands'. Continue to post and ask any and all questions. You are not weak in getting something to help you with your nerves. My choice was Luna di Luna - Pinot Grigio . I started a personal diary that I typed in a word document which help me greatly deal with my emotions and keeping a record of everything as it happened. You and you husband WILL get through this.

Lisa,
First of all you are not weak. I had to get one some medication to help me get through. I too felt like it was for th weak, but noe realize if I did not have it I would not be out of bed walking around enjoying life as much as I can. I too understand having to be strong for kids as I too have young ones. It doesn't hurt sometimes to let them know you are worried and scared so that they too ca feel safe knowing that they are not the only ones worried and scared. Your kids will be fine through all this and so will you and your husband. Sorry that you had to join us, but glad you are here. rant and rave all you need to.

Lisa, i'm from the san antonio area too and had a similar diagnosis as your husband. Your diagnosis to treatment time looks to be extremely fast compared to most of us. I found my lump in october of '08, diagnosed 11/11 and treatment started in mid-december - nearly 60 days.

I checked out MD Anderson, but chose to use CTRC in San Antonio because it is also a CCC.

As far as anxiety goes, my wife and i both were taking zanax from the day of diagnosis until the first day of treatment. When we felt like we were fighting back the anxiety seemed to subside.

Your husband, like me, is lucky to have a fighter like you on his side. I don't know how i could have got through it without my wife there for me. I, like your husband, quit surfing for answers once i got the diagnosis. My wife kept looking and would only tell me the good stuff. I found this site during my treatment by searching for "oral cancer survivors" to avoid any bad stats.

I PMed you my phone number if you want to talk about my san antonio experience i would be more than happy to tell you whatever i can to help.

Lisa - As the patient, whose husband was the caregiver, I know he hurt with me and he had his bad times too. I can say that it wasn't disouraging for me to see him having a hard time too. I knew he was human too and it hurt him to see me hurt. So, my advice is to be strong, but let him know you appreciate his struggle and it is okay to cry with him. Misery loves company sometimes. I know I did. But then you pick it up and trudge forward. I will be forever grateful for his wonderful care of me.

Lisa,

You have just been placed on one of the hardest paths in life to walk...you are entitled to cry, to not know what's happening, to feel afraid...terrified even. You're not expected to run when you are first learning to walk. Bravery is doing what needs to be done in spite of fear, not in the absence of it.

Women amaze me, because they are capable of such strength...Carmen said it best...be strong. And the times you are not, draw strength and comfort from those of us that have traveled the path you are on now.

Ok - so MD Anderson and City of Hope agree 4 rounds, maybe 5 of a cocktail of Taxol, Carboplatin, Ifosfamoide is the deal. Have been told to have 6 thermometers in hand becasue I'll lose them and have 3 people in place for night call runs as we will probably be running to the ER and I'll need someone for the kids. So - that's all in place. What can I do now to make my husband comfortable - certain kind of chair? What can I know in advance to make him the most comfortable. Still saying OK lets wake up!

Lisa,

I think your ready. Your presence is what is going to bring him the most comfort,that and the kids. As patients this is ultimately what we endure the treatments for. I scheduled my treatments early so we could drop my son off at school every morning on the way in. He liked dad coming along in the mornings.

I did not do chemo so others here will need to help there. Are you scheduled for radiation?

Kelly

Lisa

If Radiation is contemplated, here is my newest obsessive advice:
[quote] Insist on a TSH level blood test for his thyroid so you have a pre-TX baseline on what is normal for your husband. 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, but get one if your husband does not have a TSH level and is going to get radiation.[/quote]
Finally, the couch was very very comfortable with two LARGE pillows propped up against the ends so I could recline and still sit up enough not to choke on mucous.
Charm

Hi Lisa,

Creating a comfy environment for my husband surrounded by the "things" he wanted nearby was one of the first things we did just before Rad Tx. He wanted to be in the family room with the big screen tv, lots of pillows so he could sleep sitting up and avoid choking. I bought a super soft blanket and set up a tray where all of his stuff was within each; ie water bottle, tv remote, tissues, meds, Aquaphor, and a bell so that he could call for me when I was in another part of the house. It became his cozy nest that he could retire to.

Another thing that helped when balancing 'what meds to take when' is to create a daily med schedule. From 5:30 am til 1:30 am I had listed ALL meds, wound care, feedings and TX. I would check off each thing as we accomplished it. It felt great to have some control at a time when so many things are out of your control. I would be happy to email you the schedule if you want to see it. Another benefit was that I would take these sheets to the ENT appts. and could answer any question about his daily care or get some advice when things needed tweaking.

All the best -
Anita

Lisa, I did purchase a recliner with electric controls (at times he was too weak to use manual levers) and a built in heat pad, as my husband could not sleep lying down due to mucus.

Regarding getting things ready, many issues have to be dealt with as they occur. Initially, I would obsessively try to prepare ahead of time for all types of side effects, etc. I quickly learned that I needed energy for the immediate concerns or I would become too scattered and drained to be useful. I got a prescription for an anti-anxiety med and used it at night so I could fall asleep. As others have said, I especially needed this early on. Once tx is under way, you are busy and occupied and some of the free floating anxiety dissipates.

I did ask several friends to prepare soups and freeze them in small containers. One was a vegetarian "miracle broth" that we froze in ice cube trays then transferred to freezer bags. It was very convenient to have on hand as he starting taking fluids by mouth after tx. and a shot glass size was about all he could manage at first.

What helped me the most was being in daily contact with the nursing team at RO & MO. I discussed everything with them and they had wonderful suggestions and were a great support. If necessary, they would contact the MDs directly for me, so I didn't have to go through the general switchboard fiasco.

Everyone is correct in saying have him eat as much as possible now. We had a dietary consult prior to tx that was helpful. While my husband could still eat and drink, I added fortified milk (1 QT whole milk + 1 cup non-fat instant dry milk = 211 calories/14 grams protein/per cup) to everything possible. I even used it to make Carnation instant breakfast milkshakes.

A small issue is a bag ready to go for the car - plastic bags (useful for many things), book for you, phone #s such a pharmacy, etc. Often we would have to stay after radiation for infusions, MD check, chemo, etc., etc. So I needed to have his formula for PEG and pain meds with me. Actually, I often was able to relax and get some rest as he received infusions because I knew he was well taking care of at our tx center (it was the one place I didn't have to check up on what people were doing. Everyone was competent and caring). Lottie

I am feeling very scared. I don't want to see him hurting. Still don't get how he can feel absolutely fine and have this terrible stuff running through him. I wish it was me.

We're done with day two of chemo. The taxol and carboplatin have not had any negative effects. The IFEX only nominal nausea. He has one last chemo dose tomorrow and we should be on our way home by 2:00 tomorrow. I'm so happy he hasn't had any immediate negative side effects. Gearing myself for the next couple of weeks. Thank you again to everyone for the advice and support. I will keep you posted.