newly diagnosed and scared
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
Comments
-
As soon as treatment starts
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.0 -
Hi Mick
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 hands0 -
thanks ratfaceratface said:As soon as treatment starts
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.
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.0 -
fruitHondo said:Hi Mick
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
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,
Mick0 -
PLEEEEEEEEEEEEEEZmicktissue said:fruit
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
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.0 -
Scientific Evidence & Medical ExpertsTricia02 said:PLEEEEEEEEEEEEEEZ
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.
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 Sister0 -
NPCHondo said:Scientific Evidence & Medical Experts
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
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.
kcass0 -
NO Scientific Proof Smoking causes Cancer eitherTricia02 said:PLEEEEEEEEEEEEEEZ
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.
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.
Scambuster0 -
Liver and statinsScambuster said:NO Scientific Proof Smoking causes Cancer either
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
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.0 -
PET resultsTricia02 said:PLEEEEEEEEEEEEEEZ
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.
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,
Mick0 -
Contained !micktissue said:PET results
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</p>
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
Scambuster0 -
KentKent Cass said:NPC
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
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,
Mick0 -
ScamScambuster said:Contained !
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
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,
Mick0 -
More questions to askmicktissue said:Scam
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
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
Scambuster0 -
I'm a little concernedScambuster said:More questions to ask
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
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!0 -
ratfaceratface said:I'm a little concerned
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!
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,
Mick0 -
TriciaTricia02 said:PLEEEEEEEEEEEEEEZ
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.
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,
Michael0 -
SCIENTIFIC EVIDENCE AND MEDICAL EXPERTSHondo said:Scientific Evidence & Medical Experts
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
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.
Tricia0 -
Mick
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.0 -
DenialismHondo said:Scientific Evidence & Medical Experts
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
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,
Joe0
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