CSN Login
Members Online: 4

Reoccurrence and residual disease

corleone's picture
corleone
Posts: 161
Joined: Jul 2012

I apologize in advance for my following rant, I am just in a bad mood this morning; I am not trying to scare anyone. I hesitated a lot if I should post this or not, but the urge to vent is too great.  I recognize myself that some of my comments are controversial.

That’s a fear I am facing, reoccurrence and residual disease. I am 2 months out of the treatment (concurrent radiation and chemo, then chemo alone) and I will have the follow-up MRI (no PET in my case) in a month, and of course I wonder if the treatment eradicated the disease. What worries me is that not all the cancer cells have been destroyed. Unfortunately, once the cancer cells start to get awry, they start to “be” very different; it’s not a homogenous mass of cells. Some are very radiosensitive or chemo sensitive, but a few, are not. What’s worse, is that the treatment (if not 100% efficient) selects those cells that are resistant (similar with what antibiotics do, when not properly administered). This small set of abnormal cells are those that have a lower multiplication rate at the time of treatment, that’s what makes them so damn resistant (chemo and radio therapy targets cells that have a high multiplication rate, which also affects normal cells that happen to divide during treatment – hence the side effects).

Another thing that they don’t usually tell you is that both radio and chemo therapies are carcinogenic. Both induce mutations in the cell genome. [In addition to the C cells that already survived the ordeal, if that’s the case], A few other cells become then abnormal (most don’t survive or are destroyed), but the time needed to create a visible (with the current imaging technologies) mass varies from a few years to decades (some die of natural or other causes in the meantime). The new C doesn’t have to be in H&N area, cell that have been mutated are free to circulate in the body.

There is no way of telling beforehand what treatment would be more efficient; the treatment is far from being personalized. It’s just the statistics that give a clue of what should be used. Not encouraging, but that’s what it is.

I wish that more money is put in research studying the targeted therapy. This treatment hunts for specific receptors on (or within) the cells. Trouble is, there is no unique receptor that one can find only on C cells. Until they find anything that is specific to C cells, the “targeted therapy is not so on target, it also destroys normal cells that happen to have the same receptors. More research is needed.

Also, I don’t understand (or maybe I do) why immunotherapy is not researched enough. In my case for instance, the tumor is Epstein-Barr positive. There has been success using patients own Natural Killer lymphocytes that were activated and stimulated to kill the cells that bear the virus’ antigen (basically the tumor cells). But I was told that this is highly experimental. Yeah, sure.

Another interesting venue of research is Reolysin (http://www.oncolyticsbiotech.com/reolysin). Quote: “It was found that the reovirus was able to infect and selectively destroy cancer cells. When a normal cell is infected with the reovirus, an antiviral response is activated, which prevents the virus from replicating within the cell. However, inside a cancer cell with one or more mutations on a growth pathway called the Ras pathway, there is an aberrant antiviral response that is unable to prevent the virus from replicating. This abnormality allows the reovirus to multiply to an extent that is fatal to the cancer cell.”

While I am fretting about new C treatments, the bulk of the money goes to studying the classical chemo variants, because the revenues there are huge (although everybody knows that the “gain” for the patient is measured in weeks of extended life (but with what cost!).

Skiffin16's picture
Skiffin16
Posts: 8086
Joined: Sep 2009

For you...., we told you to stay off of the internet, LOL....

I think you have a little too much free time and anxiety at the moment because you are in that place of limbo of sorts. No more treatments, just waiting to see the effects of what you have gone through.

Actually, I'm pretty sure we have all kinds of bad cells that we are exposed to on a daily basis, usually our body and immune systems kick them out...sometimes they don't.

As for residual cancer from treatment, my MD's all adviced me there are chances of secondary cancer as a result of treatment... That's the price you pay for killing the cancer you have now... It doesn't really matter if your original cancer kills you first..and there isn't (as far as I know) a given that you will get a secondary cancer... I'll deal with that if it ever happens, and ummm..hopefully it never will.

At this point they have done as much as possible more than likely and you'll just have to wait and see... From my knowledge and being here for several years now. You have a very high chance that you'll be good to go... Now there is a chance a PET might show residual, that's pretty common on especially scans only a few months post Tx.. But usually that is resdiual scarring, temporary damage from rads mostly.

Not so sure what results the MRI will show as that is a little different than most of us get for scans.

Anyways....

Enjoy the break, stay hydrated, concentrate on being a live and get healthy...

Best ~ John

corleone's picture
corleone
Posts: 161
Joined: Jul 2012

Yes, I guess that’s the issue, too much time on my hands. That will change in a month, when I plan to start working again. I could have started this month, but I want to make sure I gain enough strength before jumping in the water. I still have an annoying fatigue (among other manageable side effects) but this seems to get better. I will also have to purchase some hearing aid devices (I need 2 of them and they are very expensive, total cost of around $5,000). My wife says I really need them, LOL.

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

John....This is why I love you....for being YOU and putting some of us back in our place as our minds run rapid. You seem to put things back into perspective for us...you're awesome!

Corleone.. I understand your need to research. I did the same thing. But, it doesn't change things. Our bodies are all different and will react differently then others with the same tx. I believe as you that more research is needed, but until then, we must handle what is before us. I hope you will gain some peace soon once you have your scan. We are all with you during this dark time of having done tx and waiting for the scan. I suggest you stay off the internet too. Leave it up to the doctors/specialists to do their part and you stay here and get support from this forum...your H & N family.

~Curitall (Cris)

Laralyn's picture
Laralyn
Posts: 447
Joined: Apr 2012

I had a period where I was very worried about recurrance. I still think about it, but I learned two things to tell myself when I feel myself worrying again. Maybe they will help you!

Worrying doesn't help, and in fact the stress of worrying can lower your immune system. When you feel yourself starting to think about it a lot, turn that energy toward the things you can control. Research cancer-fighting supplements and order them. Drink green tea or coffee. Exercise to improve your overall health. There are things in your control that help lower cancer risk--seek them out and do them!

Not only does worrying not help: it wastes time. If cancer DOES return for me, will I think, "Wow, I wish I had spent more time worrying about the cancer coming back?" Instead, I think I would regret having spent so much time and energy feeling badly about something I can't control instead of living my life. Remind yourself of that, do something positive that fights cancer, and focus on something else.

hwt's picture
hwt
Posts: 1931
Joined: Jun 2012

I try to remind myself to live for today just in case these end up being "the good old days". Like Laralyn, I would hate to find out these were the good old days and I filled them with nothing but worry. Take it as it comes and deal with it as it comes.

ErthWlkr
Posts: 32
Joined: Oct 2012

The reason that you're here is to give you an opportunity to express yourself to many of the veterans on this forum and in this community. And who said fear is eliminated after treatment? Cancer is an incredibly frightening disease and it brings its own emotional baggage. Add the long-lingering side effects of treatment into the mix and you feel like you'll never get rid of the disease!

No one can tell you if the cancer will recur. They can give you odds based upon general experience - but that's about it. I remember asking my oncologist about odds of recurrence when I was about a year out from treatment. He was taken aback by the question - and rightfully so. And after I asked him, I realized the question was also incredibly unfair.

Worry now and it will take away your day. Worry does not affect the outcome of treatment but it does steal the time you have, recurrence or not. You can do your research - I'm as curious as you are. Cancer can be incredibly fascinating - if not a morbidly fascinating disease. One thing that you should also find is that even though we don't have the technology yet that will fully eradicate, if not isolate, the disease, treatments and outcomes have radically changed over the years.

Treatment is also built on  risk vs. reward. So yes, radiation and chemo are unnatural things we're bombarded with. But what if we didn't? Untreated, given a steady flow of nutrients, cancer will grow forever. It's incredibly efficient - but it's also incredibly vulnerable. And year by year we're finding those vulnerabilities.

You're only two months out - you've got a long road to full recovery. Not in months - but years. So take your time and notice things along the way. Life is in the details - don't let cancer cloud your vision.

By the way - I saw your comment about hearing aids. My hearing was getting questionable before treatment - which did send me over the edge. I found I couldn't hear women's voices clearly - I lost that range - and since most of clients are women designers, I was missing important details and constantly asking them to repeat themselves. I shopped around - and found that Costco offered aids in the $2,500- $3,000 range. i went for an exam, was fitted for the hearing aids (Resound brand), and I can honestly say they were life-changers. I didn't realize how much I was missing!

But my wife still complains I don't listen to what she says...but that's another story... :)

Onward we go - good health to all!

- Jeff

 

 
fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

...from from a non-cancer standpoint at this point as I haven't started treatment but it's really no different. I have cardio vascular disease. Two heart attacks since 2007. Cardiac Bypass (triple) in '07 and 3 stents placed last October. There is no "warranty" on heart grafts or stents ;) Do I occasionally think of my heart? Absolutely! BUT... when you feel fine, thoughts of your demise, heart attacks and I believe cancer as well eventually become fleeting of mind.

It wasn't until I felt some discomfort in my chest on Saturday the 13th of October (and I didn't think it was my heart because it felt so different than the first time), that it even occured to me that it might be another heart attack.  I took some antacid and a couple of aspirin and it went away. I felt fine on Sunday. Come Monday afternoon, the 15th of October, when the pain came back, I went to the ER and had my 2nd heart attack there. 3 stents and 5 days later I was home no worse for the wear.

We do what we can and that's all we can do. The doctors in both cases concerning my heart said it was a miracle I was still here. Most patients with similar symptoms and blockages wouldn't know what hit them.

There have been a few posts concerning the fear of facing cancer. I do understand and can relate, but only to a certain point. I admit I scared myself silly when I read just about everything I could on H&N cancer! After gaining some perspective, I know my team will do the very best to treat me. The rest is up to me and the Big Guy. The point is, there are guarantees on treatment. We can only do the best we can do and that has to be good enough. Treatment is going to suck and if it returns it's going suck even more but it's out of our control for the most part. Some people obsess about the environment and global warming. Some people live in fear of anarchy and attack and spend their lives obsessed with preservation and survival. Some people are consumed with political agendas etc. I dare say that all of those people are not "living".

I adopted a philosophy after my first heart attack and surgery. It comes from the Book of Ecclesiastes. (I paraphrase)

"Eat. Drink. Enjoy the work you do. Be thankful for the blessings God gives you in this life. Live, LOVE and seek out the things that bring your heart joy. The rest is meaningless...like chasing the wind". King Solomon

I've lived by that for over 5 years and while I've made mistakes, I have no regrets :)

"T"

 

 

 

phrannie51's picture
phrannie51
Posts: 3725
Joined: Mar 2012

I was half scared to open it up......what a relief to see it's about pre-scan jitters and not a reoccurance!!  Double head slap.....LOL.

I learned my lesson on internet surfing, so when the "what if's" hit.....and pre-scan jitters are significant in comparison to other jitters I've experienced....I came here.  Glad you did, too....so we could remind you of that all important rule......quit looking stuff up!!  You'll only manage to triple those fears.....quit torturing yourself!  The months after treatment is over, and you're waiting for the scan are tougher because suddenly we aren't actively fighting the disease....we're stuck back into that wait mode that just about sent me up the wall before treatment started.  It's a REAL adjustment.

I've got to ditto T's thoughts....we've only got today.....that isn't just cancer patients, that's everybody....so make the most of it! 

p

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

 I wonder if the treatment eradicated the disease.

There is no way of telling beforehand what treatment

mass varies from a few years to decades

While I am fretting about new C treatments

 

Those are all your statements, you worry if the treatment got every last cell (Past) and you wonder about  (future) diseases and the discovery of new treatments. All normal emotions but not very healthy ones. They will drive you insane. You must dismiss them in whatever way you can. Right now is a good time for anti anxiety medication for several months as well as perhaps some counseling one on one or group therapy if there is a local group, look up your local Head and neck chapter of SPOHNC. You are having a little PTSD, it's perfectly normal in your stage of the game since right now it's all unknown. Honestly, the Doc's don't even know right now, trust them a little longer, they can't tell you everything, and sometimes you just may not be ready to receive. Tread a  little water right here, get stronger, eat better, exercise (Yoga, Tai Chi) something to calm the mind.  You got to let it play out, get what ever support you need to escape it for next few months, and then heal from there. 

corleone's picture
corleone
Posts: 161
Joined: Jul 2012

After reading your replies I realized that I must have written that during a “panic attack”. Of course you are right, and honestly, I already feel better. This was not unlike a catharsis. Thank you all.

@Jeff: we (Canadians) also have Costco, I’ll have to check what brand of hearing aids they have and prices. Good idea.

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Corleone,

i had adenocaecinoma in 2004, considered "cured" in 2009... And I still get weeks of anxiety before my 6 month check ups with the oncologist. He seems to be my trigger. But I hate to say it, it gets old thankfully, and easier. However, at least for me, it still rears its ugly head and I remember, I'm alive today, wasting my energy worrying.

now, to your point, which I wholeheartedly agree, is why isn't more money put into new Reaseach & Development? Rather than the gold standards? My pet peeve too!

If you want a real life example of what occurs.. There an excellent book, that there is talk of being a movie later this year possibly.. "Patient Number One" by Rick Murdock.  you can get cheap copies of it, or the library might have it.. http://www.amazon.com/Patient-Number-One-Cancer-Business/dp/0609603914

At least it will help you stay off the Internet for a day or two!

Kari

katenorwood
Posts: 1827
Joined: May 2012

corleone,

Hey there !  Most folks would be mind spun by your info. above.  My goodness...you are very informed !  I too wonder about most of these very valid points.  We don't like to think about them....because as everyone posted the what if's pretty much suck...and we need to keep putting one foot in front of the other.  Yes please try to relax and heal until your rechecks.  SCANXIETY.....hate it myself.  With my dx I am going to be checking into tumor profiling.  Probably not covered by my insurance....and it runs around $1000.  But once on the registry....if a tx (trial) becomes available for ADCC I'll be that much ahead.  My dx is different, with limited choices for tx's.  So I do continue to read what I can in advances being made in this line of research.  I wish you a stress free day for now....and ned in your near future.  For today that's all any of us can hope and pray for.    Katie

No head slap from me on your research unless it makes you crazy......we all need to stay well informed, but able to continue our daily lives !

CivilMatt's picture
CivilMatt
Posts: 2955
Joined: May 2012

Corleone,

 

Whoa, you really have pre-scan overload of information.  While it might seem like the doctors are playing “whack-a –mole” with your cancer, they are using the best tools available to them.  Cancer is insidiously evil especially when it is in you.  We have all been where you are at, some dwell on the what ifs and others find a way to live with it.  For me, I just have to hope treatment worked and live my life accordingly.

 

If I purposely think about the what ifs I can be right where you are, but I don’t have time.  Look around the H&N forum it is full of tragedy, heart break, hope and life and I intend to live my life with respect for each of the members of our exclusive club.

 

Doing the best I can.

 

Matt

hwt's picture
hwt
Posts: 1931
Joined: Jun 2012

You always seem to get it right! And, your way with words like "whack-a-mole" always add a smile.

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

I can add nothing to what these wise folks have said...I agree with each crossed T and dotted i ....so buckle and and make this ride most of us have been on and realize most of us are still on talking....  :)

 

You will do great!!

 

Best,

Tim

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network