Ok, for those who know me, don't be horrified because the prognosis is very good but I do have cancer. I titled this blog the way I did because I will beat this. I'm writing this in part for therapeutic reasons and so that I can look back on it. But I am also writing this so that I might help others who are going through this whether it be yourself or your family.
Here is the first thing that I want everyone to know. MY CANCER IS NOW PREVENTABLE!!!!! GET YOUR CHILDREN VACCINATED FOR THE HPV VIRUS!!!!!!! PLEASE!!!!!
It is squamous cell carcinoma on the back of the tongue which has spread to lymph nodes in the neck. It has the genetic marker which clearly identified it as being caused by HPV. And if you think that it doesn't apply to you, it is estimated that 75% of the population that has reached reproductive age has HPV. And once you have it, it is with you forever. For most there are no symptoms.
The journey started about a month ago when I was shaving, I noticed a lump in my neck which I knew should not be there. Thank god that I have a wife and good friend who made sure that I did not blow it off.
There will be more to come but I still have things that need to be done around here (making peanut butter this morning, the store bought stuff stinks). I just wanted to get this thread started to give myself a commitment to writing things down.
Wow. Good for you, for getting it taken care of, blogging about it, and spreading the word about the vaccine. I hope you keep making good progress.
There are several here who have undertaken similar journeys, mostly OK in recent years. Each experience is individual, but then you already know that!
Big tip from when shemademedothis went through chemo is to be sure to jot everything down in a diary of sorts, so you can report back what you experienced and when. This helps your support team calibrate their treatment each time they meet with you, and minimise side effects.
Take care of yourself!
I have several friends and acquaintances that have been through this one Jeff and I love your attitude. Any cancer diagnosis is frightening but this one really tends to knock people for a loop because it tends impacts younger people. There's no time to hear "you have cancer" that is good, but in your 30s-40s-50s it must be particularly jarring.
As an aside, all the people I know got through it and are living life (from what I can tell) the same way they did before the diagnosis. That said, the earlier the better.
Outcomes for HPV related cancers are considerably more likely to be good than the "traditional" oral SCC that are more driven by smoking and drinking. But again! Better as you say to prevent.
Best to you and your family.
50 % meds and 50% courage. You have what it takes. Best Wishes
Just got back from the dentist, I am a go for treatment, no upcoming issues. Thanks for the support. JF, you are correct, because it is from HPV treatment is considered more effective than if it had been from tobacco use.
I can truthfully say that right now I do not fear that the cancer will be the end of me, what I fear most is the side effects. I have a great team at Memorial Sloan Kettering and they have a cure rate on this type of around 95%. That isn't survival, it is cure. So I'm in good hands.
Side effects however are wigging me out a little bit. I love food!!! it is pretty much assured that after a couple of weeks everything will taste like cardboard. Will it be long-term or short-term? There is really no way of knowing. Salivary glands will most likely stop working, there is a decent chance that this will be somewhat or completely permanent. I will probably have great difficulty swallowing so getting proper nutrition during treatment will not be easy. They also mentioned something about going through a few weeks of the worst pain of my life. I have no problems with the pain, but the idea that I may never fully taste a good heirloom tomato or my wife's strawberry rhubarb crisp, that is an awful thought. And this year, I truly perfected cooking a steak taking it up at least ten notches, it will be very depressing if I only get to enjoy it one more time.
Good luck. Our MOL family is behind you.
Hang in there. We'll find the cardboard recipes.
best of luck! Sending a gazillion PVs.
My cousin's husband had this year's ago, when he was really young, late 20's or early 30's and he's had a clean bill of health since.
Please take care!
our kids were vaccinated for HPV. My younger son was over 18 when he received it, so actually decided for himself (he's a smart boy )
Good luck. Sounds like you've got a great team of doctors. Wishing you the best.
I don't think I know you, yet yours, like all other cancer stories, shakes me up. Too many people I know have had cancer. Your optimism is heartening, and I'm glad you decided to blog your journey.
jeffhandy, shemademedothis said to me when he had his sudden bowel cancer diagnosis and treatment that his best way to handle it the doom-and-gloom (like death of taste buds/forget your favourite foods/you'll never feel warm again [in his case]), was simply to take in the information and then forget it. Handle the effect daily if it manifested.
We were talking about this yesterday, in fact, with family who hadn't seen in him in years. For him, what actually was the worst thing was that everything was way too salty - everything. And everything room temperature was way too cold going down. (A glass of water from the tap was like a slushie)
So he just stopped worrying and listening to others' experience, noting his own and having the team adjust what they could to lessen those effects. 4 years later, he's eating normal foods, and 'wearing added-value tummy'.
Ok, this morning is the most nerve wracking so far. It's DECISION DAY! So far I have had 2 CT scans, a PET scan, an MRI, 6 needles shoved into my neck and consultation with at least 6 doctors. This has been easy because it is all part of the process to get the best data available so I have just been following instructions. We have discussed options that may be available depending on the results of all of the testing and what could restrict some of those options.
As far as treatment goes, I may be able to reduce my exposure to chemo and radiation but that will involve a couple operations with lower amounts of chemo and radiation in between the two operations. This would involve a big scar on my neck but since I'm a biker it could be considered an enhancement and it could really help when my daughter starts dating in a few years. Because it is caused by HPV (VACCINATE YOUR KIDS!) it is supposedly easier to kill so I am eligible for another study which would slightly reduce my exposure to the radiation and chemo, unfortunately it is a relatively recent study so there is not a lot of long-term data on the results. Short-term looks good. And then there is the traditional proven treatment which is the highest doses of radiation and chemo. Problem is while these things are the cure, they are also poisons that can cause different problems including other cancers later on in life.
So right now as I post this, the doctors are having a meeting discussing the data that has been collected and they are weighing the options that they are comfortable recomending. This afternoon my wife and I will meet with them, listen to them and then we get to decide. I'm still not positive which way I will decide to go, but I am hoping that I am not boxed into just one decision. But the one thing that I do feel confident about is that I will get the best possible information. I have had nothing but good experiences at Memorial Sloan Kettering, everyone there from the doctors to those who empty the trash exude competency and compassion. At least so far.
I have more experience with Sloan than I'd like. That said, my experience is that you have the right read- you are in the right place, with the right people.
There's an esprit de corps that permeates all elite organizations and they are no different in my view. Hard put your finger on it but from the intern to the building engineers to the entire staff- everyone carries themselves like they're on Seal Team 6. You're working with the people who perform the research and pioneer the procedures that the rest of the world adopts. That's not opinion- that's fact.
For my family knowing we were in the best place and not having to second guess gave peace- we had the right weapons and the right people were holding them. Your family has made the right call in my fairly informed opinion.
Just saw your post on the other thread- politics is nonsense- life of our brothers and sisters is everything! We can break chairs over each other's heads during a debate but we'll toast each other's health with a beer afterwords
I'd be up for that beer sometime, thanks.
Ok, so decision day came and went without a decision. The option that I really wanted to go with was eliminated. I was told that it would be riskier than the surgeon was comfortable with because of the 2 surgery methodology. Because of where the cancer is on my tongue the risk of bleeding was too great without opening me up even more. So that was a little disappointing.
So I was ready to choose another option and then Dr. Ganly (the surgeon) did tell me that there was one more surgical option and that is to conduct both surgeries (neck and tongue) at the same time. If he manages to get clean edges then I would be able to skip chemotherapy and then there would only be radiation follow up treatment after the surgery. And so long as the surgery goes well, the radiation exposure would be a little bit less than going for the full Chemo/Radiation option and since radiation effects are exponential one or two weeks less could be a big difference. The downside is that if they do not get clean edges on the surgery then I would have to get both chemotherapy and radiation after the surgery.
So I am just waiting for a couple more answers and then I am most likely choosing the knife over the poison. Radiation will be a part no matter which choice I make.
None of these paths is preferable, as the only preferable path is no cancer. Chemotherapy and radiation and surgery are all survivable in a great many cases.
Decision made!! All have the same cure rate so the winner is..............................Surgery with radiation!!
Made the call about an hour ago. I just need to find out how early they can schedule it so I'm waiting for the phone to ring.
The reason that I chose this option was to potentially avoid chemotherapy. I'm relatively young (54) and there is always a chance that I may get another form of cancer later on. By avoiding Chemo now I will potentially have more options later on if something else rolls around 15 or 20 years from now. It's still possible that I may have to have Chemo depending on the surgery results but that is just a chance instead of being definitive. The tastebuds will still take a hit because that is from the radiation but all in all, I feel confident in the choice.
It sounds like you chose wisely.
Does radiation threaten your sense of taste because of the location of the tumors?
The surgeons will know if they get clean margins, won't they? That will be a comfort.
Tom_Reingold said:It sounds like you chose wisely.Does radiation threaten your sense of taste because of the location of the tumors?The surgeons will know if they get clean margins, won't they? That will be a comfort.
Yeah, the primary tumor is on the back of the tongue, radiation will be in the mouth. But quite often there is loss of taste even when it is far from the mouth. They will definitely know if they get clean margins.
Good luck with your treatment. The odds are so overwhelmingly in your favor that it must be reassuring. I think it's great that you are sending the message for kids to have the vaccine. One thing, if you wonder whether you should call your medical team about anything at all, even if you think it may be unrelated to your treatment, make the call. I was allergic to one of the chemo drugs and didn't realize that the reaction I was having was related to it at all. If I had told them, they would have been able to monitor it better. It was fine in the end.
Look at it this way... cardboard simply cannot be any worse than tofu. And if folks can figure out how to have tofu for Thanksgiving, ANYTHING is possible.
But in all seriousness, all prayers and strongest wishes for a quick, bump-free (literally and figuratively) and total recovery from this.
it's great you made a decision and are moving forward. Here's hoping you get clean margins!
The word cancer alone conjurs up all kinds of emotions and thoughts. Mortality is a big one. I had my first diagnosis 3+ years ago when a mass was found during a routine sona-gram monitoring a abdominal aortic anurysym. Needed surgery, 5 mos chemo followed by 7 weeks radiation. Tumor markers repeatedly came up clean and CT scans as well. I was on my way to that magic 5 year place when I could call myself cured. But, a big but,in March 2016 I noticed a walnut sized lump on my upper,inner thigh. We did a MRI and results leaned toward a hematoma or a bruising of sorts. Well, the lump kept growing. Month and a half later anotherr MRI,and this time they said the possibility was of a sarcoma or cancer of soft tissue. Bingo. Long story short, walnut grew in 2 months to a 3 x 7 inch tumor which needed to be removed along with the muscle behind it which ran from the kneecap to the groin. This was followed by chemo which was everything you imagine about it. I am now into my 4th week of a 7 week radiation protocol. This cancer while being aggressive also has a high rate of recurrance so I will be getting CT's and MRI's every 6 mos or so for however long GOD sees fit to keep me around. You do what you need to do. Confidence in your team and willingness to follow directions. Be your own advocate. Get copies of all tests and keep a folder. Self examinatrion. Be an active participant in your journey. I'm grateful they found it, fixed it, good insurance coverage and good support from family and network.Having a strong faith really makes a difference as well. Good Luck. Stay Strong.
Maybe we can all brainstorm and assemble a list of various food textures for you to refer to during treatment.
Juicy, crunchy, creamy, slurpy, greasy, cooling, etc. It might all taste like cardboard but the variations in textures will offer something to focus on. Will you still be able to sense the heat of chile peppers?
Prayers for your recovery. Keep busy and engaged like this and treatments will be finished in no time!
Just remember you have a really loud and large rooting section here in MOL Youve got this!! And we are here to have your back .
Thanks to all for their good thoughts. I had a good weekend, went to my happy place in PA and had some good family time. Today on the other hand hasn't been the greatest I spent the morning waiting for a reply from MSK (Memorial Sloan Kettering) regarding when my surgery would be. Uncertainty is a killer mentally. I also spent some time looking around the house and saw all of the projects that I had planned for the next few months. Sure they can be put off but I had our main bathroom gutted down to the studs when I found the Tumor and started this process so that is a major inconvenience. So this morning was spent in a bit of a funk and a little bit anxious. To top it all off it seems that my body chemistry does not respond to Xanax so I have to figure out another anxiety solution. I hear that there is a good one made on the Isle of Islay.
Good news, I got the phone call and I am scheduled for surgery on November 9th. I was hoping for the 2nd but I guess it might be best that I am scheduled to be put under hours after the election. I'm sure that many of you are now jealous that after this never ending torture that we have endured (both sides) that I will get a nice medically induced nap while the rest of you will be fighting over my leftover Xanax. And please no comments on the candidates in this thread.
All joking aside, it is a great relief that I now know when this will be moving forward. As I said in the previous post. Not knowing was messing with my head.
@georgieboy, wow that's rough. Hang in there, and keep that great attitude of yours.
having a target date helped D too; he never handles anxiety well, and used the time to get in better shape pre-surgery. (It helped that the docs gave him a weight loss target too!!) He was told he'd handle the anaesthesia better, as well as the surgery itself, if he were a bit fitter so he walked every day and also did a bike ride most days.
And he finally tidied his study!!
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