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newly diagnosed and scared

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

I've been diagnosed with NPC and just had the PET/CT scan today so I've not been staged yet. The only symptom I had was a swollen lymph gland which I first noticed in March '09 and told my PCP Dr about it. He gave me a course of antibiotics (contra indicated by at least one study I found - I've photocopied the paper for him) which seemed to work but by June the gland was getting bigger.

By November it was about 3cmx2cm. The ENT referral was where I had the first FNA which was a "sampling error" but the Dr said he thought it was either lymphoma or infection. He did a core biopsy which also was dubbed a sampling error. He sent me to UCSF and the pathologist there did another FNA gave me her impression that is was NPC, keratinizing, poorly differentiated. I had an MRI shortly after that as well as another exam with fiber optic and they cannot find the primary. The PET had already been ordered and that was today.

Early this morning I noticed the gland was much smaller (no treatment yet). Right now the gland is <2cm. The ENT Dr says "this sometimes happens" and it is not necessarily and indicator of a good prognosis. The occult primary and the shrinking lymph "could be" because of my strong immune system. Once I felt I was dealing with a malignancy (about 2 weeks ago) I cut out all sugars (even fruits - only in very small quantities) and began exercising. I read a great deal about how cancers love sugar and hate oxygen.

Now I'm just waiting and like most of you, the panic and fear is overwhelming. Mostly the fear is about the uncertainty of the future, which I think is quite ironic. Anyway, I thought I would give my story and say hello to this community of survivors, of which I am now a member, and ask for any tips for how to deal with/think about treatment options.

Warmly,

Mick

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

As soon as treatment starts you will begin to feel better. You have already taken some measures by yourself and that has made you feel like something is being done to fight this battle. Now that you are at UCSF things should all start to happen rather quickly, I suspect you soon will be meeting your Oncologists. I am base of the tongue so cannot offer to much in the nasal category but they are here and I'm sure will be along with some insight. Yes the panic is awful but do yourself a favor and get on some anti-anxiety medication today, it will make a big difference. You need to be calm and clear headed, not making decisions out of fear. It also helps to get a full nights sleep. I think you are doing all you can for the moment until you have more information with the Pet results and tratment options and staging are established. Gather as much information as you can and get ready to fight and welcome to the club, We will walk with you.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

I am doing ok and not feeling as overwhelmed. I am a marriage and family therapist trainee, finishing my MA this May. I have a lot of emotional and process support and anti-anxiety medication is not needed at this time but thanks for the reminder.

The PET scan results are not in, but a blood lab is available and my liver function is not great: ALT=87! If I'm getting chemo that's not good news. they have to find out why teh liver is irritated and of course the possibility of liver metastases is there. I have a meeting with my Kaiser oncology Dr this Thursday in Oakland. In the meantime I'm doing research on ALT and liver function. I have been told before I have a "fatty liver". I am overweight but not obese (at least by current measurement systems). I have never been told I have hepatitis, but not sure if I've even been tested for it either. That's probably next.

Does anyone have any info or experience with liver function as it relates to chemo- or radiochemotherapy?

Thanks for your time and support.

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

Sorry to hear you have NPC, but I am glad to have you here with us on CSN. There are two of us here with NPC, Kent and my self both of us will be here to help you through. My NPC was discovered in late 2002 when I lost hearing in my right ear, after going to three different ENT’s I finally found one who was more interested in me then the money.

I am not going to fool you by saying don’t worry, the radiation treatment will be hard on you body, but the good new it that NPC is a very treatable Cancer and the cure rate is very good and life after treatment is just as good with a few change to the new Normal you.

I am glad you have found out about Sugar and how it can affect the growth of cancer. But please understand all sugar is not the same, the problem is in processed sugar. This is the sugar that everything man made is made out of and cancer loves it. The sugar you get from eating raw fruit is the good stuff that your body will need to help it heal. The different in all of this is what is Manmade and what is God made.

I have a list of foods you can start eating to help you body help its self, my e-mail address is on my post if you want drop me a line and I will forward it to you.

Stay in touch we are all here to help you get passed this part of your life.

Take care my friend and put your prayers and faith in Gods hands

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi Hondo. Thanks for your reply. I am reading a book titled "Nature's Cancer-Fighting Foods" by Verne Varona. His take on fruit is that 'in moderation' it is not bad, however, he notes the "acidifying nature of sugar" and while fruit may be classified as an alkaline substance "in the lab" what is often overlooked is sugar's acidifying nature in the digestive system (pg. 67). The concern here is that cells do better with a slight alkaline pH. When presented with more acid the cells tend to store toxins, rob minerals, and cause aerobic fermentation which gives rise to malignancies. the basis of any food regimen is knowing where you are at, and I do not have a clue what my pH is so I'm asking about that. Verona concludes teh section by stating " ... for cancer cells, candida growth, and compromised conditions of reduced intestinal flora, minimum fruit, as a medicinal suggestion, is recommended."

I'm looking for other sources of information so anything you have is welcome. Please forward your food list to michael@justwrite.us.

Warmly,

Mick

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

I am so fed up reading "quakery". There is NO scientific evidence that sugar feeds cancer, ABSOLUTELY NONE. Of course lots of writers make money in supporting this eroneous myth. So please lets stop this nonsense and deal with facts and NOT fiction! If you doubt what I am saying speak to your oncologist. In fact I would advise always speaking to your oncologist/doctor regarding diet and the way forward once you have had a cancer diagnosis. Also the alkaline subject is crap - our own bodies balance our acid and alkaline levels. As I say speak to the medical experts if you doubt me. There are far too many charlatans out there making money from extremely ill people.

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

Tricia02

The problem with Scientific Evidence is that there is just so little good Scientific Evidence on anything, and absolutely no Scientific Evidence on how sugar affects the body especially on people with Cancer.

I was told to go home and die about 4 ½ years ago there was nothing more my doctors could do for my NPC. That is when I started looking for myself and found out about the affects of Sugar and Alkaline in the body and I am still alive today to help others find the truth about this that doctors don't quite understand yet.

So I guess according to Scientific Evidence I am proof that Faith in God, Diet, No SUGAR , and keeping the body high in Alkaline does work.

I am also praying for you hoping that God will show you his truth, May the Gof of my Fathers bless you Sister

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

Mick- I am the other NPC survivor. I will be particularly interested in the treatment you are advised to have. Mine was Cisplatin and Flourouracil thru pumps for 4 days, two different times, along with full head and neck radiation x 31-full and 3-partial, because the primary could not be found. No surgery, other than biopsy, Port and Feeding tube- neither of which are that big of a deal. Port and tube just take some getting used-to. Treatment shrunk the two tumors on my neck rather quickly. Larger, upper (lymph) tumor, came back as positive NPC, but didn't show in any of the other 4 biopsy samples, or with the second biopsy done on my tonsil. NPC has an excellent survival chance. Be sure to keep Hondo and I informed as to what's going-on with you. I'm 13-month, and Hondo is 7-year, and we're here to help. You will very likely find a time you need someone to drive you to and from the rads, and I would suggest you error on the side of caution. I didn't, and suffered more than I had to. Might not be the best of times, Mick, but you will get past this, and perhaps you will emerge from this experience as a far better man, as I know I am. Was it worth it? You better believe it, Mick. I do, and so does Hondo. You will be physically changed, but only a little; and, where you hope to someday get back to- you will get there. I have. I returned to work one month after the last rad, and am still working. Believe, and you will get there.

I also advocate natural foods/produce, rather than the processed foods, but the greater part of my healing is thru faith. I believe foods should be consumed in the purest condition possible- as God put them on our Earth, and additives/preservatives defy that condition. Unfortunately, for the masses, only the organic seem to be mostly untarnished foods- even fresh produce appears to be subjected to chemicals, which is not a good thing. I, thus, do advocate Hondo's advice on what is best to ingest, especially for those who have cancer. I advise you to side with the natural diet- fresh fruit and produce, cleaned to an extreme, and natural supplements to help the immune system. Were I you- I would side with Hondo's words and experience.

My 88 year-old Father, whose career was in Agriculture (grain elevator manager), swears the escalation of non-smoking cancers is a product of pesticides/agricultural chemicals. When I was beginning, the first two questions asked of me- 1) smoker?, and 2)involved in agriculture? I'm from north-central Illinois- heart of the Illinois corn belt, lived on a farm for two years, and I have tilled soil a couple times on an IH tractor, etc. Cancer among non-smoking and non-drinking farmers in my area is not uncommon, though still a large minority do develop it. Thing is- the medical community does recognize the significant risk for cancer development amongst farmers: this I know to be fact, and it is because of the chemicals now used in agriculture on the large scale. Just something to think about.

Again, Mick, I welcome you to our thread.

Believe.

kcass

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi Kent. Thanks for the informative post. I am likely headed down the same road as you as my primary cannot be found. What did your onco discuss with you? Was your primary described as 'occult'? Were you given a range of options? Did you have many side effects? It's a bit freaky that the target volume is essentially vague so they need to broaden the irradiation. What other structures suffer from that protocol? Did they do random biopsies on you under general? What was that like?

Sorry for all the questions, but my treatment is likely to start next week so I'm gearing up for it. Whatever I learn I'll pass on.

Warmly,

Mick

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

Having a healthy diet that can provide all the vitamins, minerals, sugars and salts the body requires and is obviously a very desirable practice, while trying to fight cancer or any other disease. Removing refined sugar from your diet is desirable for the well being of the body generally, but this alone will not reduce the sugar level in your system, which is generally controlled by your pancreas. And likewise the acidity/PH of your system is also maintained by your body and would not normally be affected by diet, unless the diet was severely deficient in some way. So from this, I believe modifying food intake within acceptable ranges ie not completely removing necessary nutrients from your diet completely, would normally have very little effect. In my last post I commented that it’s always wise to consult with your oncologist/doctor. This is not only to find out if certain dietary changes may help, but it is necessary in order to avoid harm that can be caused. As an example, some people consume large amounts of vitamin c, which is an anti-oxidant and is very beneficial. But if this is consumed whilst undergoing radiation treatment the high levels of anti oxidants can actually reduce the effectiveness of the radiation treatment. Therefore, although the pursuit of alternative remedies can lead to benefit with health of alleviating some side effects of some treatment, it should never be considered a completely benign practice.
In the UK we do have plenty of good scientific evidence to support my beliefs and fears. But this is under constant revision as the research in all fields uncovers more detail.
I am happy that you appear to have beaten your cancer. Many people who have chosen conventional treatment also chose to augment this with alternative medicine. And all too often report that alternative medicine worked. Who is to know? This is a contentious argument isn’t it?
I absolutely agree with alternative therapies alongside conventional treatments. I am a believer in the “feel good factor”. But I fear that some people reading such blogs as yours may turn their backs on the most proven route of treatment. We have to be careful and cautious when offering advice.
I am a bit confused by your statement that there is scientific evidence to prove that a belief in God does work!
I am an atheist and chose to follow the conventional route of treatment. I do eat organically and am careful with my diet, ie not to be overweight. I don’t smoke and I don’t drink alcohol. Those are my life habits. Even by following this lifestyle of good food and as few toxic substances as possible, I can only infer this gave my body a good chance to fight this disease and tolerate the medical treatment during that fight. Taking into account the above, and my non belief in a God can it be assumed that my atheism saved me? I think the chances of that are no stronger nor weaker than the belief in a God could save someone.
In summation, if having a faith has given you comfort in your battle I am please, but please do not try to impose your faith on me. You are already aware I am an atheist so no need to bless me, nor pray for me. If you wish to wish me well, that is kindly accepted.
Tricia

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

I do believe that all people have the freedom to believe what they want and that no one should force there way or believe on another. Here in the USA we have a lot of people all wanting to force there way of believing on others, whether it is in removing the words, In God we Trust off our money or removing the Christmas stand off city hall.

My Boss was atheist, why he would hire a Christian to be his second in command was far beyond me until I asked him one day, this is what he told me. I needed someone who I could trust not to lie and someone I could depend on to be there when I needed. There were 13 men before you all who were not Christian all who failed my test. He never told me what his test was but we worked the next 28 years together, until he died in October 2002. One of the questions he ask me many times was, If I knew I was going to die and right before death asked your God to forgive me; would he? The only answer I could give him was, if you are sincere yes he would.

I believe that there is good and bad in everyone, it is what we do to help or hinder others that make us one or the other. From my own experience of dealing with Cancer for the passed 7 years I find that our medical Doctors are not all up to speed on treatments outside of there medical field. This is why I say that my doctors told me if I did not take more Chemo I would die, at the same time they knew that if it did not work the first two times it more then likely will not work this time.

Wile on Vacation for the last time in my life in 2006 I found an herbals guy by accident who knew about the affects of Sugar and other bad habits that we do to our bodies. He told me that he has helped many of people with cancer so I followed his recommendation and suggestions and took his herbals medicine.

Here is where I stand today and have documented evident with MD Anderson in Houston and my local Doctor where I live. I have not taking any medical treatment for Cancer as of March 2005. The PET showed in 2006 that the NPC I had was back again. All I am doing is staying off hi sugar products and on some herbals stuff nothing else and the doctors or perplexed at how well I am doing.

I have never told anyone to not listen to there doctor, if anything I am the one that said you need them listen to what they are telling you and if you don’t understand ask them to clarify it. How ever I don’t believe in the part, when they have done all they can do to tell someone go home and die. There is still hope; In my personnel believe God hears the request of his children and it was he who lead me to find what I needed to help my body heal its self.

All I can do now it to share that info with others who need it. Eating right and lowering the sugar level in someone body will not affect Radiation treatment; however I do agree with you that some herb’s will alter the affects of radiation treatment and should not be used together unless approved by your doctor.

I do have a strong faith In God and in signing off always leave with a blessing. In my praying for you I feel that if there is no God then there is no hurt to you, and if there is a God then maybe he will lead you to his truth.

I do ask you to forgive me if I have offender you in anyway as is never my aim to hurt anyone but to help them.

Take care and I do wish you well.

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

Thank you Hondo for your reply, I am not offended.

This subject candrift in and out of specifics. I think we all would agree that a balanced healthy diet is a route to good health. Any reference to specific health benefits outside of this would obviously continue to be a debatable subject for a long time to come. But pursuing those points now will quite possibly just turn into a circular discussion.

Whatever you believe in and whatever works for each one of you, then that's your answer. Sometimes even if something only helps emotionaly, that can be enough to make a difference.

I am not offended but I do often feel that people showing me pity for my lack of religion or offering to pray for me, sometimes comes across as showing me less respect for my lack of belief in a God, than the amount of respect I assume they would like for their belief in a God.

Take care and I wish you well.

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

I can assure you I will always respect you and all people no matter what they believe. I have worked overseas for a long time and have many friends who are Islam and Buddhism. And as I told you about my boss of 28 years, he in my book was more honest then most Christian that I know, never one did he take anything that was not his. While he had no faith in God he had faith in what was right and wrong, and that was highly respected in my book.

You are right on the emotion sometime just knowing that other people care about you is a big lift in a person health.

Take can my friend

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

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soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

From a NY Times review of a book by New Yorker writer (and former NY Times writer) Michael Specter:

[ “I always say that electricity is a fantastic invention,” the British economist Michael Lipton once told Michael Specter, whose bristling new book, “Denialism,” explores the dangerous ways in which scientific progress can be misunderstood. “But if the first two products had been the electric chair and the cattle prod,” Mr. Lipton continued, “I doubt that most consumers would have seen the point.”

Here is what they would have done instead, if Mr. Specter, a staff writer for The New Yorker and former foreign correspondent for The New York Times, correctly captures the motifs that shape the stubbornly anti-scientific thinking for which his book is named: they would have denounced electricity as a force for evil, blamed its prevalence on venal utility companies, universalized the relatively rare horrific experiences of people who have been injured by electrical currents and called for a ban on electricity use.

The term “denialism,” used by Mr. Specter as an all-purpose, pop-sci buzzword, is defined by him as what happens “when an entire segment of society, often struggling with the trauma of change, turns away from reality in favor of a more comfortable lie.”

In this hotly argued yet data-filled diatribe, Mr. Specter skips past some of the easiest realms of science baiting (i.e., evolution) to address more current issues, from the ethical questions raised by genome research to the furiously fought debate over the safety of childhood vaccinations.

Among the toes on which he stomps: those of Prince Charles (cited for presumption and ignorance in his advocacy of organic farming), Dr. Andrew Weil (whose promotion of vitamin supplements is equated with snake-oil salesmanship), Robert F. Kennedy Jr. (accused of writing an antivaccine article “knit together by an almost unimaginable series of misconceptions”) and The Huffington Post, “which has emerged as the most prominent home for cranks of all kinds, particularly people who find scientific research too heavily burdened by facts.”

Given this lineup of targets, it goes without saying that “Denialism” will fit Whole Foods into its rogues’ gallery. So Mr. Specter makes the requisite field trip to a Whole Foods store, showing less interest in buying fish than in shooting them in barrels.

He quickly finds ludicrous, let-’em-eat-fiber merchandise (i.e., organic instant oatmeal with hemp, with a disclaimer about hemp’s link with marijuana and a label stating that both George Washington and Thomas Jefferson were hemp farmers). But Mr. Specter, who isn’t entirely chasing cheap shots, treats Whole Foods as a jumping-off point rather than as a destination.

In “The Organic Fetish,” a chapter that ably illustrates this book’s tactics and purpose, he uses Whole Foods as the apotheosis of a strain of magical thinking. First of all, he asks, what exactly is organic food? Is it more healthful than genetically engineered food or than food that has been harvested by robot-guided machinery rather than human hands? And are organic fertilizers more earth-friendly than synthetic ones? “There are no short answers to those questions (at least none that are true),” he says.

...

Of all the grenades lobbed by “Denialism,” the most explosive is aimed at Dr. Weil, the otherwise-sacrosanct avatar of New Age medicine. In the chapter called “The Era of Echinacea” Mr. Specter describes signing up for one of Dr. Weil’s customized mail-order regimens. “Dr. Weil, who argues that we need to reject the prevailing impersonal approach, reached out from cyberspace to recommend each of these pills wholeheartedly and specifically, just for me,” But Mr. Specter decided that the pills advocated by Dr. Weil fell into three categories: those that did no particular good, those that did some good but could interfere with the effects of prescribed medicines, and those that “seemed just plain dangerous.”

What bothered him more than Dr. Weil’s advice was Dr. Weil’s philosophy. “The idea that accruing data is simply one way to think about science has become a governing tenet of the alternative belief system,” Mr. Specter writes. And the additional idea that the evidence of experience is as important as the results of meticulous scientific testing is, in Mr. Specter’s view, one of the most dangerous forms of denialism, especially when it comes from a figure of Dr. Weil’s stature. As “Denialism” puts it: “It is much easier to dismiss a complete kook — there are thousands to choose from — than a respected physician who, interspersed with disquisitions about life forces and energy fields, occasionally has something useful to say.” ]

Just a perspective. One.

Take care,

Joe

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Tricia,

Sorry buy I totally disagree with your summation. Oncologists are Doctors who study medicine NOT NUTRITION. Unfortunately most are very narrow in their view and have the same view as you. I have a Naturopath in the family as well as having used them for 28+ years as well as other types of alternative therapists.

My recent more detailed foray into dietary studies and 'Complimentary Treatments' all contradict what you say. For one example, Greg Anderson, author of 'CANCER : 50 Essential Things To Do' (Plume) - interviewed more than 16,000 cancer 'survivors' to find out what they all did in common to overcome their diseases and the dietary claims regarding: wholefoods - good, processed foods and sugars - bad, body acidity - bad, alkalinity - good, positive attitude -good, all come home to roost very firmly. This has been covered in many many studies and books on cancer and nutrition. If Greg Anderson (founder of the Cancer Recovery Foundation) had listened to his 'Medical Experts', he would have gone home and died.

Conventional medicine, which most of us have used, is one part of the treatment we have all here chosen to our benefit and detriment. The further application and adoption of lifestyle changes related to diet, exercise, spiritual and emotional factors are all shown to be integral in long term recovery from Cancer.

We all deserve every chance to beat this dreaded disease by any and all means possible. To make such a broad sweeping presumption to discredit other measures and methods proven to be extremely beneficial to treatment and recovery of cancer patients as you have done, I believe is substantially erroneous.

Medical experts get to bury their mistakes and those beyond their scope of ability - by the thousands every year. While there are 'Charlatans' in existence, the majority of qualified Alternative Therapists are well intentioned and able to treat and help people as are the medical experts. It is time for more of them to open up to other therapists/therapies to apply a more unified approach which amounts to 'Complimentary Medicine', and when this occurs, we will all be better off.

Scambuster

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Mick are you taking any statins right now and might those be a cause of your liver reading. If so is it advisable to discontinue while on chemo? Just something to ask your chemo doctor?

The reason I bring it up is that prior to being diagnosed my doctor wanted me on statins for high chlosterol. Now he won't put me on them because he says my liver is still dealing with the effects of the chemo toxicity.

Also the schedule of administering chemo and type of chemo can help with the toxic effects. For instance there is cisplatin or erbutux. Also there is the chemo regime of once a week or once every 21 days. They will tailor a plan according to your needs. keep up your research, pub-med is a great resource for searching for abstracts related to your subject matter as well as different clinical trials. See you on the boards and don't forget to educate us in return.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

From Greg Anderson's own website:

[Greg Anderson, founding CEO of Cancer Recovery Foundation, was diagnosed with metastatic lung cancer in 1984 and given only 30 days to live. Refusing to accept this hopeless prognosis, he went in search of people who, like him, had been told by their doctors they were “supposed” to die. His findings from interviews with over 16,000 people form the strategy and mission of CRFA, begun in 1985. Prior to his illness, Greg was vice-president and executive director of the Robert Schuller Institute located at the Crystal Cathedral in Garden Grove, California. He is the author of 9 books including Cancer: 50 Essential Things to Do, The Cancer Conqueror, and The 22 {Non-Negotiable} Laws of Wellness. Today he travels extensively to speak and conduct seminars, sharing his experience and techniques.]

Seriously. Seriously?

This is a guy you want to use to fortify your argument? Seriously?

A former (?) pimp for the televangilist R. Schuler? A guy who probably has a high school degree if he is lucky, to go with his stellar ability to make a very large living off of the pocketbooks of those who are truly dealing with cancer?

Seriously?

You cite this as if it is real science? Seriously?

Everything you say beyond that is meaningless, as that is not just meaningless but derogatory to those who have to deal with the disease today, NOW.

Shame on you. (Scambuster, indeed!)

Joe

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Yesterday was difficult because I knew that today I would have the most information so far. The uncertainty of knowing is the toughest part of all this. Anyway, here's what my ENT Dr wrote to me in an email:

"I just went over the PET scan with the radiologist and it lights up only the cancer in the right neck area. There is no indication of any primary tumor and no sign of any further spread anywhere else."

"The bloodwork so far is normal with the exception of one of the liver tests being slightly elevated which has been the case for several years on prior tests. You should contact your PCP to followup on the cause of any liver irritation, but this is not related to the cancer."

In a follow up email he agreed that this was very good news. I follow up with my oncologist Thursday to talk about what's next, which may include random biopsies, radiation, and/or chemo. Interestingly the single lymph tumor has shrink over the last two days from >5cm to <2cm. Is that common?

In response to the spirited discussion about sugars, acid/alkali, and general nutritional effects: Indeed I have talked to my ENT Dr as well as a nutritional oncologist about the impact of sugar, fermentation, and toxicity and they concur with the book I'm reading that there is ample evidence to show a causal relationship between dietary intake and malignancy. However, I also agree that it isn't wise to hear from one source so I will also speck with my oncologist (cellular nutrition may not be his specialty, however). I'll report after I see him Thursday.

Thanks for all the *positive* discussion and support.

Warmly,

Mick

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Mick,

Your results look positive in that no spread has occurred. That's good news.

Lymph node(s) may respond by being inflamed as the one(s) nearest to a tumor may be working hard to process necrotic cells often involved with the tumor. Hopefully no live cells have been caught there to create a secondary site of spread. Most likely if you go down the road of radiotherapy, they will hit that node anyway.

I hope all goes well with your next appointments. Keep us updated.

Regds
Scambuster

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Is that the term used for what's happened to my lymph, 'contained'? What does that mean, exactly? I have been told that there is a tumor in the lymph. Is that what you mean by "no live cells have been caught".

What is your story? Did you have NPC?

Thanks for your interest and support.

Warmly,

Mick

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Mick,

Your ENT guy said your Scan lit up in the neck area only. This doesn't say if the cancer is in the lymph node OR perhaps in other surrounding tissue. I assumed it was somewhere other than in the lymph node. Apologies for any confusion.

I interpreted your news as 'contained' meaning no metastasis (spread) has occurred which is what you want to hear. You will no doubt get more explicit feedback when you meet with your Oncologist to work out how best to treat it. The options are generally: Surgery, Radiotherapy and Chemo depending exactly where, how big and what type of cancer it is.

As for my case, I had a Stage 1 tumor on the left tonsil and a small part into the tongue. The two closest lymph nodes did show in the scan at 1.8 which indicated 'inflammation', not necessarily affected with live cancer cells as is the case with metastasis. They say they need to hit over 2.0 to be of real concern which is when the PET CT Scan 'lights up'.

2 of my 3 doctors thought the lymph nodes were just inflamed as they were processing the necrotic cells involved with the tumor. I had all three Doctors around the table: ENT Man (Surgeon), Oncoman 1 (Chemo) and Oncoman2 (Rad) as soon as my results came through.

It was strange that I had options to choose from and my questioning led me (and them) on the course of action we took. I had surgery to cut the tumor out from inside the mouth followed by IMRT and Erbitux over a 7 week treatment period. I am now 12 weeks out and doing fine with the usual few common side effects re: Saliva and taste issues.

Your process may be different. I was fortunate to have them all available at the same time to discuss the plan. It all happened very quickly as the PET CT was Friday morning and the meeting was Friday 4pm and I was then booked for Surgery first thing Monday Morning.

You may opt to take a little more time to determine your plan or seek a second opinion if you aren't confident or sure about anything. You need to be confident in the team that will be looking after you. I have a very very good GP who knows all the doctors in the region and I called him and told him my situation and who I was working with and I heard the welcome words "Good, they're about the best around". I was treated in HK.

Bounce your questions around here you will get a good range of people's experience to assist as you go.

Cheers
Scambuster

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

First your ENT went months without diagnosing or suspecting cancer. To date you have had two Fine Needle biopsies that from what I'm reading were inconclusive: My first FNB said I did not have cancer. They don't mean anything.

" FNA gave me her impression that is was NPC, keratinizing, poorly differentiated. I had an MRI shortly after that as well as another exam with fiber optic and they cannot find the primary."

Her impression dose not mean anything. Though not uncommon they can't find the primary. Although they usally find it and probably will in your case.

To date has anyone told you "You have cancer" Have they ruled out TB and Cat scratch fever or some other infection?

Cancer does not shrink on its own. Eventuallly it doubles and continues to double and double until a large tumor is now a massive tumor. Your condition is not behaving like cancer.

Your next procedure should be an actual biopsy of the lymph or removal of that lymph and a diagnosis of Squamos cell carcinoma. Until that don't let anyone radiate your head. This is a good time for a second opnion!

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi ratface. I was told by the pathologist and my ENT that I had NPC. I called the pathologist (she gave me her card and said to call anytime) and I asked her if it was still her impression that I had NPC and she said yes in fact she ran a keartinizing stain as the last test and everything came back positive for NPC.

I have asked 'why not take the node or whereever the tumor is and look at that?' but my ENT wants the onco to make that call (tomorrow). SO I'll make sure and ask that question (already on my list).

I have little means of payment outside of my insurance: how do I get a 2nd opinion? Do I just find the best onco around and get my stuff over to them? I really very much agree that they ought to make very sure before doing any RT or CT or both and I think dissection is a way to know positively. What are the risks?

Thanks very much ratface for your time and concern.

Warmly,

Mick

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi Tricia. I spoke to my nutritionist today about your (and my!) concerns about sugars and body pH. I quoted your remarks to her and she agreed and disagreed with you. She agrees that the issue is far to complex to equivocally state that sugars, without any other interacting factors, have a causal relationship to cancer. She disagrees however in the notion that there is "no scientific evidence" about the impact sugar and body pH have on body chemistry. In her opinion eating well is a way to help the body achieve pH naturally, as you allude to. A diet that is too acid or alkali will most definitely have an impact on the health and quality of cells. The "fact" remains that in vitro or in vivo cells develop and act differently when pH is different.

I'm asking my oncologist tomorrow as well. Hopefully we can broaden this topic and become more curious about what is happening at a cellular level so we can give the best, evidence based advice we can give rather than what we believe to be true or what we hear anecdotally. In general, a diet that is low in sugar is better than one that is high in sugar; a diet that is high in fiber is better; a balanced diet is better. These are facts proven by many, many scientific studies and are generally not in dispute.

Warmly,

Michael

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

Contact your insurances Health care carrier let them know you been told by your doctor you have cancer and want a second opinion.

There are three types of NPC most common here in the US is keratinizing. Each type looks different when seen under a microscope; studies have shown they start from the same cell type, the epithelial cells that cover the surface lining of the nasopharynx.

I find this web site very helpful in understanding about my NPC

http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_is_nasopharyngeal_cancer_17.asp

Also some of the affect of having NPC are lost of hearing to one or both ears, this is due to fluid filling the ear drum and can’t drain because the Cancer has the nasopharynx passage blocked. Other affect of NPC are dizziness, ill feeling and even bleeding.

Also it is possible but very rare to have Cancer go away or shrink by its self with out doing something to affect its growth. I say this because when I was told that my NPC came back for a third time all that could be done for me was to try Chemo again in hopes it would work. I opt for no more of this but have been staying away for hi sugar products and taking Herbal treatments. I believe this is what has been helping my bodied immune system to be more active in help to fight the Cancer.

Take care and don’t be afraid to ask the doctor questions concerning your Cancer and its treatment.

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Mick make sure you get an actual biopsy of the node in question not a fine needle aspiration. You want to be scheduled for surgery to have either all or part of that lymph node removed and sent to pathology. Once pathology makes a confirmation or not you can ask the lab to send out the samples to a second lab for a second opinion. They usually have a standard form for this and it probably will not cost you that much although your insurance will most likely cover it. Johns Hopkins has a service that exclusively deals with second opnions on pathology and I believe Mayo does also. This is a routine thing for them, don't sweat it, ask and they will do it. The Hopkins one is on their website. My suggestion is you get the pathology retested no matter what the initial result. While your at it make sure they test for HPV16 and HPV18. It's just useful information for later down the road.

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Mick

I was having the same problem with my ENT and left him in the dust. Found someone I could trust. The ENT is the Surgeon and should not be passing the buck to the oncoman about a surgical decision. You want these people to talk to each other, if they don't, now is the time to move on. I know these are difficult times for you. You want the cancer out yesterday and are anxious to get started but you have a little time. A week isn't going to make a difference. Now is the time to pick your best treatment facility and best team to fight this. Ask them if they meet for "Tumor Board" meetings to discuss your case. If they don't find another comprehensive cancer hospital that uses the team approach. Be polite but be your best Advocate because nobody else is going to do it. Head and Neck cancer is rare, about 4% of the population, ask how many head and neck cases they deal with a year, if the number is not in the hundreds you want a differnt hospital.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi ratface. Just a bit of a clarification. My PCP was the one who ignored the early signs of the growing tumor. My ENT has been pretty good even though he botched (aka, sampling error) the FNA and core biopsy of the swollen lymph gland (3rd FNA done by UCSF pathologist MD which led to diagnosis of NPC, occult tumor). The ENT rushed through the approval for the UC labs because my insurance (Kaiser) have their own facilities for doing such stuff, but couldn't get me in. He's not going to be at the meeting today but he and the oncologist have presented my case to a tumor board so whatever happens today will have all their input.

Thanks for the advice and I'll keep everyone posted.

Warmly,

Mick

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Mick

Thats great, sounds like they are following protocol and looking out for you. Thats the point I was trying to make so that you would know what standard procedure was and that you were not being short changed. Keep us posted and don't be a stranger.

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

They are: 1) Onco just spelled it out for me with the 1st visit- Port, feeding tube, and morph. Did not describe the experience, but I grasped what she was meaning- I just didn't expect it so soon.
2)Not familiar with "primary occult." U of Iowa diagnosed the sample from the upper tumor in my neck as positive NPC. All other biopsy samples came back as negative- including the first ENT office needle in the tumor that later came back as positive. Primary was not found, and Oto says that is still a concern, but "occult" was never mentioned.
3)No, as the Onco gave me no options. ENT/Oto sent me to her, and he had told me that treatment was a no-brainer, because of the two very obvious tumors and positive result, and because of the success rate with chemo and rad. Did tell me rad, alone, would not cut it- had to have both, together, and that's the way the Onco did it.
4)Side effects: long term- loss of gum tissue, and so-far minor teeth problems. If you haven't already, you will have to get a full dental check-up before treatment. Had a couple days with cranial nerve pain, but that went away. My tongue took a major hit, but has recovered with only a little more sensitivity than before. My left ear was never a problem, but such is common. Nosebleeds were frequent, but stuffing kleenex up the nostrils always stopped it. Mouth sores- cannot be avoided, and you must get everything in order, ahead of time, to deal with, as they do get a bit extreme: my mouth got bad, Mick, but it did amaze me how fast it healed with magic mouthwash and nystatin, though the gum tissue doesn't grow back. And swallowing became very difficult. I got the feeding tube, I still have, before treatment began, and all my nutrition (4.0 formula) came thru it for some two months. Lost most of my already-handicapped voice during treatment, but it did come back as better than it was before. Critical, Mick, for me was the liquid morph and magic mouthwash in getting thru the rough times. I was also doing two 1/2 tabs of Xanax most every day- the first within an hour before the daily rad. Nobody likes the mask, Mick, used with the rad- and Xanax helped me deal with it. Tried the morph twice, before the rad, and neither time went well. You are positive w/NPC= the Xanax should be your's for the asking. Trust me.
5)My first biopsy Op. took 5 samples- tumor, back of mouth/pharynx, windpipe, tonsil, and nasal. Second, short-notice, biopsy was also nasal- ordered by the Rad Dr. at the last moment- trying to spare me the full head and neck. Both biopsies were under general. Oto took a chunk out of the back of my mouth that I could clearly see, post-op., and it shocked me- but the greater shock was how fast that area healed. Blew my mind.

You started quite a thread, Mick, and I agree with most everything stated by the Vets.
I have a long med history with one of the foremost Otolaryngologists in the world, back in the day, Stanton A. Friedberg of St.Luke's in Chicago. My cancer case, in the now, was transferred from one Oto to another, because of scheduling, at the 08 end; and, the first time I met the second Oto- knew he was the one to handle my case. Feel comfortable with his being my Oto- Wake Forrest grad, currently tied to the U of Iowa med network. Do think this is important- you need to feel comfortable/confident with your Oto and Onco and Rad.

Lastly, Mick, if you go thru chemo and rad, together, you will probably come to a time which Hondo and I, and likely many more, know of. I would urge you to be pro-active in the early stages, and getting the team and course ahead put together as you can be confident with. But there will later come a time, Mick, when the rad technicians, nurses, and even the Drs. become secondary players in this. You will know that time when it comes- I know it as the time when one of God's Angels dwelt with me, and cared for me in both the mental and physical state, and all I experienced was okay with me. I got sick and had to be hospitalized in week #6, so even then I was not out of the woods; yet, though a moderate degree of anxiety did exist with the treatment and symptoms, all greater fear was stifled to the extent of being very distant. If and when that time comes for you, Mick, I would advise that you to let it happen- let your Angel chase all the dark clouds away. It will not be easy getting thru this, but nothing worthwhile is easy- and you will emerge from this as one very much worth the while...

Believe.

kcass

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

I'm going to start a new thread as I got the treatment options from the onco and there's a bit more for Tricia about cellular activity.

Thanks to all for all the information and attention to my path.

Warmly,

Mick

maria2009
Posts: 10
Joined: Oct 2009

Like you, I had a very tiny bump at the bridge of the nose when I was first diagnosed for cancer. One doctor (GP) told me it would just get bigger. I went into a depression after that. Then another bump appeared on the side of the nose. I was so desperate and I cried everyday. I had nothing to lose so I took lots of health food supplements, spices and chinese herbs because I am chinese origin ( it must be about 10 different kinds altogether). I am also not afraid to use spices generously because I come from Southeast Asia and I am very familiar with these spices like tumeric.

On 19th Nov my rad doct saw me and the bumps were still there. By the first week of Dec, the front bump downsized and the one on the side disappeared. Even my husband was surprised. I am into my 2nd week of treatment and the front bump isn't there anymore. It could be that my immume system went up because of what I took.

In the book Anti-cancer by David Servan-Schreiber, he described how the tumour in the mice went down once their immune system came round.

Another book worthing reading is Cooking with Foods that Fight Cancer by Dr Richard Beliveau, who is a prominent doctor in Montreal.

Both are doctors citing lots of proven scientic theories. Dr Beliveau appeared alot on the TV documentaries in Montreal and his articles about food and cancer appear in the newspaper weekly. He even give public talks.

For those of you who have been arguing over whether there is a link between food/diet and cancer, the answer is yes and please read these two books.

For those who want to help themselves may I urge you to read these books.

And I also believe in faith when it come to healing.

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

Hi Marie, we have acknowledged there is a possible link between diet and cancer/illness already. But once having been diagnosed with cancer there's the rub! Nose cancers are more common in people of Asian origin, perhaps cos of their salty diets, who knows for sure. And we do already know of the benefits of turmeric and cancer. But the problem is the doses one has to take for these foods to have any effect, ie the benefits of vitamin c are well documented for instance. The only successful medical treatment in trials so far, using vitamin c, have been extremely high doseage injected intraveneously. Summing up, a good balanced diet and less stress can possibly avoid a cancer diagnosis.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Marie,

You may not be 'afraid to use spices generously' because of your ethnicity or familiarity or even because you are putting your fate in god's hands, but that does not mean that some of these choices and some of those spices may not be adverse to proper treatment as we know it today.

CURE (Cancer Update, Research and Education) magazine, for example, in its winter issue, devotes some time to the possibility that green tea may be a curative agent. To its credit, the magazine does not dismiss the potential for one or more of the elements in green tea, it also cautions that too much green tea is apt to be disruptive to certain chemotherapy treatments.

Anti-oxidants are also hailed as cancer cures among the charlatans and would-be scientists, but those who ARE scientists and doctors would caution that the very nature of anti-oxidants make them counterproductive when a person is undergoing chemotherapy.

So it is with sugars as well. Sugar, for those not up on their chemistry, includes a number of types, among the ones I remember, fructose, sucrose, glucose, and some of them are ESSENTIAL to survival. (Someone, by the way, earlier in this post, indicated that we should not listen to our oncologists when it comes to research and 'facts', since these folks are apparently not up on the latest and can't be relied upon, and yet, here, many posts later, you and the original poster are going to your oncologists and other medical professionals to refute what you do not apparently like to hear.)

This site, frankly, is probably not large enough for a list of all of the scams that are going on, related directly to cancer and cancer survival. Like another scam I am familiar with, it sucks the spirit from the weak, the despairing, the hopeless, and does so without conscience. All for personal power, self-aggrandizement, and personal profit.

I have only one axe to grind here, but am compelled to grind it whenever I am so compelled. I do not care what people believe in. I do not care, ultimately, what they decide for themselves with respect to treatment options. I do not care, ultimately, if they decide to gorge themselves with vitamin D to their detriment, or if they decide to refuse medical treatment entirely because god told them to do so.

I care enough to try to talk them out of it, but it's not my job. It's not my compulsion.

My compulsion here and now is to keep people from hurting others with their silliness.

Which is to say: as high-minded as your motives may be, please be sure to advise readers that you may be full of it, particularly when you very well may be ... full of it, that is.

Scientists would do that, if they were wont to spew 'facts' before they were validated.

Take care,

Joe

(PS I note that this was only your fifth post in what is now three months since joining the board. Let me say welcome! Let me say don't be a stranger!)

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

You make fairly broad and I think unfair assumptions about what I intend and what I have written. I am making inquiries which is quite different than "going to your oncologists and other medical professionals to refute what you do not apparently like to hear" which is absurd and incorrect. Indeed the article you site is far from conclusive about the benefit vs. risk of green tea and underscores the overall theme of your post, which I agree with, and that is discretion in anything is wise.

I do believe you have an axe to grind, but I do not think it is with me.

My ENT and oncologist have essentially agreed with me and others that balance is what is important and that studies do indicate specific supplements may help in many aspects of cause, treatment, and prevention. The idea is to not simply trust what is being said, but to research, and that is my message to anyone seeking alternatives to traditional treatments: do research, talk to survivors, read books - the better informed I have become the less scary this has been for me and the better equipped I feel to fight.

What you do not mention is that many Drs are lobbied heavily by big pharma and HMOs are driven by cost effective treatments, so some are going to go a long way to advocate for what they know works and traditional treatments do work in many cases.

The problem I have is not with traditional treatment vs. non-traditional per se because I'm going to do what works, what is evidence based. I have a problem with the lack of patient advocacy. There is no professional advocacy group within my HMO that is available to me to talk through these scary issues including non-traditional modalities. I would love to see that change.

Respectfully,

Mick

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Actually, Mick, I was speaking most directly to the person with the marie handle (see the reference to just five posts in toto) although I will submit that I also was directing my attention to the entirety of the thread.

As for an axe to grind, I am not sure to whom or what you refer. You are correct in that I do not have an 'axe to grind' with you. In fact, it seems that with respect to 'discretion', which I take to mean careful reasoning unbiased as much as possible by cultural and environmental influences, we are in absolute agreement.

For what it's worth, I am not averse to the notion that alternative therapies and medicines can provide solutions. I am well aware that much of what passes for modern pharma, as you call it, began with and continues to be fortified by discoveries in nature. Without mold, after all, there would be no penicillin.

For what it's worth, I am not averse to the notion that prayer can have a positive influence on outcome. That may surprise some folks. But it is true. I have long been on record on this very site as being a proponent of what I refer to as Hope and Humor. And I have also been long on record on this site as acknowledging that for some of us prayer and hope are one and the same.

I may not pray, Mick, but I accept prayers without complaint, if that makes sense.

On the other hand, I refuse to be beat over the head by a Bible, and expect that others who are members of this site should anticipate the same courtesy, even as they have more important fish to fry at the moment, which is, after all, the fundamental issue.

If you do not understand the difference between praying for someone's recovery and suggesting that one put one's survival in the hands of god, then you and I will continue to disagree on that subject, albeit in a pleasant manner, I would hope.

For what it's worth, if I should discover that my responses in these boards are motivated by some personal agenda, I will quit posting.

They don't pay well enough, frankly.

Best wishes for your continuing success with treatment, Mick.

Take care,

Joe

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Thanks for that reply. I was referring to what you posted, about having an axe to grind, but I think I misinterpreted your original meaning.

As for faith, I believe in the healing and restorative power of my body. Something removed the primary tumor, so that has a great deal of meaning for me.

I received my staging today, stage 4. That is a "poor prognostic indicator" as my Dr says, but also know it doesn't mean the end is nigh. I have time to fight this and I will fight and I will survive this.

Tumor board on the 14th, then surgery, then 6 weeks later radio/chemo. I'll keep you posted.

Warmly,

Mick

moconnor
Posts: 4
Joined: Jan 2010

Hi Mick,

I just wanted to send a note letting you know that I started a new tread for NPC. My mom was just diagnosed a month ago and starts her treatments on thursday. When do you start yours? Do you know what your 'plan' will be as far as treatments? Sorry, you may have mentioned it already but there is A LOT of different pots above to go through.
I hope you are doing okay and I am sending lots of happy thoughts your way.

maria2009
Posts: 10
Joined: Oct 2009

Soccerfreaks

Perhaps I should have being more elaborate. Before the treatment ( I had to wait 2 and half month)I research, took what is judge good for myself to prepare myself to strengthen my immunune system to prepare myself for the treatment which I understand is harsh. I am now undergoing treatment and have stopped all this herbal medicine ( I decided to follow my onco doctor's advice to stop during the treatment except multivitamin).

You were very right to say about that stuff on green tea. Whereas I used to drink several cups a day, it is down to 1 cup daily or not at all. Green tea is good for the immune system. However taking it while undergoing chemo can cut out the effects as basically chemo is supposed to destroy those bad cells. Chemo isn't going to work effectively if it can't do the job it's supposed to do ie kill those bad cells.

Were I in remission after treatment, I would certainly start to look after my "terrain" again, that is, my immune system.

By the way, I did not suggest people should forgo medical treatment with alternative medicine. Medical treatment halts the disease and gives speedy recovery. Alternative medicine helps during recovery, in the long run and even before treatment to help immune system. Had I have strong immune system before I believe I might not have develop cancer, it may just stays at bay. I must admit for the past 2 years I didn't eat sufficiently although I never drink or smoke.

Yes, I am full of it but only at the right time and right place and the right combination.

You take care too.

And I apologise to others who may have feel a bit confused by what I wrote. Anyway I decide to exit lest I may mislead unintentionally again. English is not my native anyway so I may as well be.

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