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Mother has lung cancer! Help with the confusion please!!!!


Zimbo

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Hi all,

This is my first visit to this board - and I am desperate for advice and help.

My mom (65 y/o) smoked for 40 years and stopped about 6 years ago due to breathing problems. She was told she had emphasema (sp?) and has lived on medicatione ever since to ease her breathing. Every time it got worse she would take steroids which helped. The only thing that did not get any better was her voice which was hoarse and she had to keep clearing her throat before talking. A throat specialist found 2 nodules in her throat and removed one of them and sent it for testing. It was clear. The assumption was the sterioid pumps she was using had caused them as well as her hoarse voice. Overall she has managed well and has been very active walking every day, housework etc.

Over the last 9mths or so her breathing has got more difficult and she would avoid stairs and hills if possible. A new specialist she saw did an x-ray and found it clear. In fact he said he did not believe she had emphasema - only asthma and changed her medication. Her breathing was a little better so it was left.

About 2 months ago she went for another routine x-ray and the specialist saw a very small suspect area on her right lung. He thought it might be cancer but said it was probably very early stage because the tumour would only be 1cm or less and he could operate. However she had to wait a month to get a CT scan. The news was terrible. He said the tumour was 3cm in size, there was a lesion on her left lung as well and that the lymph nodes by her throat were swollen so therefore cancerous..... AND NON-OPERABLE. She was scheduled for a bronchoscopy 1 week later which was done and a biopsy taken during the procedure via the bronchoscope.

A few days later she saw the doctor for the results. He said the tumour had looked OK and that the biopsy was negative BUT said he had no doubt she had cancer - probably stage 4 because it was in her lymph nodes. They had also done a urine and blood test and it seems her liver and kidney function was OK. Also the CT scan gave them the all clear.

Because it is already 2 months since her initial diagnoses the doctor assumes it is NSCLC because of the slow growth rate. He thinks she may have had it for months or years but it didnt show up well on the x-ray because it is at the back of her lung. However it couldn't be sure how much the tumour had grown because it was so faint on the original x-ray.

She saw her GP to ask for tranquilisers to calm her down as she is losing weight now through lack of appetite. She feels sick and very depressed. Her GP told her her case was very sad and it was a shame these bronchoscopy biopsys were so unreliable - in fact they hardly ever work!?!?!?!? Why the hell did they waste 10 days on a procedure that doesnt even work most the time??

She now has to go for another biopsy (this time via a needle through her chest) and a PET scan but it may be 1 or 2 weeks before she gets seen.

These delays are terrible! She is on the public health system here in the UK and there is no way to afford private treatment. Surely these 2 months so far could be the death of her?? If lucky she may start chemo at the end of the month but not sure. We do know the specialist does not want to operate and does not want to use radiation so it chemo alone....

He refuses to comment on her life expectancy or anything further until the 2nd biopsy and PET scan get done. He has commented that she is still in good health and strong enough to take the chemo but thats it. My mom is convinced she has a few months to live and is very scared and depressed. She has started to lose a little weight and feeling sick because of the stress and worry never mind the illness!!

What are your comments/ideas/thought on this everyone? Does this sound like Stage 4 even though she is in good health and there is no evidence of it in her other organs? If this is true what are her chances of survival on chemo alone??

Any feedback appreciated.

Many thanks

Zimbo

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Hello Zimbo,

I am so sorry for what you and your mother are going through. I lived in London for a while so I know how frustrating the Natl. Health Sys. is. The good thing to remember is that nsclc is supposed to be slow growing. In your shoes, I would make many phone calls to your mothers Dr. or whomever dr. she is supposed to see next. Call constantly, get under their skin, ask alot of questions and know your terms and treament options and medications and speak as though you know what you are talking about. I believe that you can influence Dr.'s when they think you know what you are talking about! (Everyone at my dad's cancer center knows me by name. I am the "loud mouth" who shows up at every appointment with a stack of papers and new research and thirty-minutes of interrogation questions for the doctor and nurses.) Find out all you can about lung cancer / options, then make as much noise as you can to get your mother seen and to ensure adequate care for you. No one knows your mom like you do, know one cares for her the way you do and no one will fight as hard for her the way you will.

Keep us informed and my prayers are going your way.

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Zimbo, I am sorry that you found the need to come to this board, but you are in the right place for info and support.

My Dad was diagnosed in January 2002 after a needle biopsy of the spine, with what was thought to be SCLC, extensive stage (it had metastisized to the spine) and was present in both lungs. In October 2002, after three types of chemo, the tumors were not being effected, yet they had barely grown. A needle biopsy of the lung showed NSCLC, a very slow growing form of it. Please be prepared, needle biopsy's can be very tricky, and if they don't get a good sample another biopsy will probably be in order. My Dad is fairing very well. He is now on IRESSA, which is still a clinical trial but pretty available to many people. The Iressa is used only if two or three (I forget which) types of chemo were tried first. I know your mother is scared and may be depressed, you may want to request an anti-depressent for her. Please emphisise to her that her cancer is slow growing, read posts from here to her that may improve her emotional outlook on the whole thing. Her attitude will greatly effect her fighting this disease.

Katie is absolutly right, research as much as possible. And let your Mom know that she is not in this alone. Come here as often as you need, even if you just need to vent. I have no idea about the health system in the UK, but from what you said, it is at the least slow.

As far as statistics, when my Dad was diagnosed I read them and was so sad. Now it is a little over a year and I not only question the statistics, but ignore them completly. Just try to keep an eye out for symptoms of further mets (metastis) so that they may be handled ASAP.. But keep in mind that there is much that can be done for your mom, come to this board at anytime with ANY and ALL questions-because there is alot of knowledge to help point you in the right direction for more information. I will keep you and your mom in my thoughts and prayers. Tell your mom that there are survivors of this disease, and there are people surviving with it also. My Dad has been able to live a pretty normal life, even through chemo, many people have-so, why not her? Right? Please keep us posted, and know you are doing all you can for your mom. Your looking for info. and that is REALLY IMPORTANT. Please take care, Deb

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Zimbo, Just like your mother I was very anxious about the delay in my treatment. There was a suspicious spot found in my left lung in June or July of 2001. I wasn't officially diagnosed until Oct 17, 01 when they did a needle biopsy, which, by the way was a peice of cake. The dr went thru my back, and got a good sample. I had a 10% collapsed lung, so I had to stay an extra 4 hours in the hospital (this was outpatient). My daughter and my sister and I played cards and laughed and had a silly time.

I couldn't see an oncologist until the beginning of November! I was told it would take over a month to get all the necessary tests so the drs could Stage my cancer correctly. I didn't start treatment until December 10. At that time they were planning surgery after chemo & radiation, Staging me at II. At some time (don't remember exactly when) I was re-staged at IIIB and told I was NOT operable! So, after all the testing and all the waiting the doctors were WRONG.

Now to the interesting point. I insisted on surgery whereupon they found that I was operable, and took all the cancer out (2/12/02). So, their staging was once again wrong!!!!

Advice for your mom. Stay positive. Don't let the doctors get you down. They are not gods and they DO make mistakes. And for you, Zimbo, make a hell of a racket! It has been proven that aggessive patients (and their support people) get better treatment and are more likely to survive! When I was told I HAD ONLY A 4% CHANCE OF SURVIVAL, I said, "Oh, my." And told the dr I planned on being in that 4%. As long as it isn't 0%, one has a chance!! Good luck! JudyB

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Hi all!

Many many thanks for all your responses. It does give me some hope.

After some complaining my mom has been "granted" a needle biopsy this tuesday. She has a full body PET scan in 2 weeks and a bone scan in 4 weeks. I think we are heading in the right direction!!

Will keep you all updated.

Regards

Zimbo

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Well done Zimbo! It's good your mom gets the biopsy, keep up the chatter and persistence and be your moms biggest advocate. It makes all the difference in the world when it comes to her care. Keep up informed and best of luck for your moms recovery!

Hugs

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Dear Zimbo,

It sure sounds like you and mom have gone through a lot. I encourage you to continue to do research and question doctors and their opinions.

Don't let the doctors assume anything. Especially that the cancer is nsclc because it is slow growing. My doctor "assumed" I had nsclc because it was slow growing and some other reasons. That was over 2 years ago. I just found out that I've had carcinoid lung cancer all along. It is a very slow growing cancer but it doesn't respond to chemo or radiation. Please,please before you start any treatment...rule out carcinoid cancer. It is a very rare cancer and doctors don't think about it that much. I'm living proof of that. Keep remembering to ask all the questions you have, do research, don't stop and don't let the doctors intimidate you.

Best of luck to you and your mom.

Teet

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Zimbo, I can empathize with you and your Mom. My wife has NSCLC, but it took them a while to identify it because there was little or no tumor in the lungs. The main tumor was on the upper spine, which the doctors now think migrated there from the lung. They took a biopsy from this tumor but, because it was on the spine, it was too dangerous to get much of a sample. They could only determine it was an adeno carcinoma, and not its origin. She has bone mets also on a rib, her skull, a hip and a shin bone. The shin bone had a large enough tumor and more accessible, and that is where they got the second biopsy that confirmed it was NSCLC. Then when they looked back at the lungs with this knowledge, they could make out a small shadow on the top of the left lung, just opposite the tumor on her spine. So they think that is where the cancer started and it just migrated a short distance. She was in the hopsital nine days while all this was going on. A very trying time for all of us. We really to need to have patience and perseverence in the diagnosis and treatment of this disease. Always vigilant. Best to you and blessings. Don

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  • 2 weeks later...
Guest Zimbo2

Hello again.

Sorry for late response but my mom only received her results today.

She went into hospital on Tuesday for the needle biopsy. They entered through the front of her chest and she said it was agonisingly painful but they managed to get a sample. After the procedure they x-rayed again and were concerned because she had air trapped in her lung which was making my mothers breathing very difficult. They decided to keep her in overnight and hope the air would dissapate. The following day it was still not much better so she stayed in for another day & night. On Thursday they tried to drain the air with a needle but gave up because she found it too painful and they couldnt get it in the right place. As her breathing had eased a little they decided she could go home that night.

She saw the specialist today and he informed her that she had ADENO CARCINOMA. She was told chemo' only works less than 50% of the time for this "strain" of cancer. She is seeing the oncologist on Thursday for a treatment plan.

WHAT DO YOU ALL THINK?

Thanks

Antony

p.s. User name has changed slightly due to losing my old password. Sorry.

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Try not to think in statistics. i know it might be hard but since i found this board honestly i do not even think about it that much. positivity is the only thing that can help. I know it is scary and all but just try to focus on all the wonderful stories here and find support from the rest if us in the same boat! I hope all works out for your mom i really do!

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Dear Zimbo2,

On the positive side, it sounds as if there is some action is finally happening in your mom's case. Thank goodness for that! As Karma said, we try not to tie ourselves to statistics, but try to focus on what we can DO to improve situations. I'm praying for your mom. Let us know how things go on Thursday.

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Guest Zimbo3

I know you are all right - but I find it hard to ignore statistics.

I have been trying to find out more about this specific type of NSCLC but what I have read so far is discouraging. It seems it has the poorest prognosis of the three varietys?? If anyone has any more info (particularly good) then I would love to hear it.

Thanks again!

Zimbo

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Guest DaveG

I was diagnosed with Adeno, albeit very early. I have a friend who is going into his 3rd year as a Stage IIIB Adeno. My opinion about statistics is that is exactly what they are, Statistics. Each one of us have decided which end of the scale we are going to be on. Remember, statistics can be, and have been, beaten. Adeno can be survived, and there are many Adeno survivors on this board.

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Dear Antony,

Well my dear, I am not sure where your getting your info from, but I was told that Adeno is one of the most common lung cancers in the NSC family. I have never heard of it having one of the "poorest prognosis" I had Stage IIIA-b Adenocarcinoma when I was dx.d in 1995 and many of my lung cancer support group members have had it as well. I know many survivors of Adneo.

Stay away from all those stupid statisics, PLEASE!! They are SOOOO outdated, not to mention the fact that they don't tell you the ages of the patients they used on those stats. Quit looking for all the bad stuff and just stay focused on what is good and all the positive and true stories you will get right here! :) The down side of any cancer isn't going to do you any good in reading all that stuff, so why not stick with what is good and what has worked for so MANY??? I think that's a GOOD idea, what do you think? :)

Stay Strong and keep us posted. Best wishes to you and your mom, let us know what her treatment plan will be.

Warm and Gentle Hugs,

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Guest sharon

The most important thing to remember is that now that you know exactly what type of cancer mom has is that you can RESEARCH, RESEARCH, RESEARCH.... and don't believe all the terrible things you read as was said in the post before mine, alot of these statistics are outdated. Each person responds differently and tell Mom to keep a positive attitude...

I have found it to be quite an advantage to "know what I am talking about" when I have to talk to Dads Doctor... Mom and Dad are older so they don't ask questions... just do whatever he tells them to do (which so far has been excellent advice), but I am constantly questioning and I believe it keeps doctors on their toes!! Good Luck to you and Mom, you are in my prayers as is everyone on these boards. Love, Sharon

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Just one more "ditto" to ignore statistics. My sister's first doctor "spit out" statistics on the same visit as her diagnosis (Stage 4 NCSLC Adeno). Talk about devestating! So, my sister then had little faith in him, and "fired" him. She found a much more empathic oncologist who avoids statistics and encourages her instead. So far, my sister has responded well to treatment, and is very close to "outliving" the initial prognosis. She intends to WAY outlive that prognosis. Like, by years and years. And, just as importantly, surrounds herself with doctors, friends, and family that BELIEVE she can do it!!!!

After eight months of this nightmare, I can tell you (as many others on this board can too) that the paralyzing fear and sorrow does ease up somewhat. Daily life does go on, and you will all learn the "new" routines. And as awful as lung cancer is, there are beautiful moments found in every day. Just face each day one at a time..... what a lesson to learn, and such as harsh way to learn it. I wish your mother the best, and pray that she responds to the treatments.

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Guest Zimbo2

Wow!

Thanks all for your encouraging advice and storys. I relate all I read here to my mom and am definitely encouraging and positive. She seems to be fairly well at the moment and not too depressed.

Her breathing has improved as the trapped air has cleared from her lungs. She is still short of breath but at least is mobile now. She has a bit of a "chesty" cough which has been there ever since her biopsy. Her antibiotics don't seem to be helping much but it is not too bad.

She saw the oncologist on Thursday last week. Apparently she was very nice and encouraging so that's helped my mom feel better after the awful nurse she had been speaking to. Because she has a touch of Flu' they delayed her treatment until Friday next week. She is going to start with Gemcitabine(Gemzar) & Carboplatin(Paraplatin) which I believe are fairly modern drugs.

What are your experiences with these drugs?

Thanks again!

Zimbo

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Zimbo,

My husband Gianni recieved these two drugs. He had four rounds(each round is 2 chemo treatments) Initially the docs said 4-6 treatments. He tolerated the first two ok except he did get pneumonia. He didn't throw up. When nauseated he took compazine which did the trick. After the 3rd he needed blood due to low red blood. His platelets were very low after the 4th and he got a transfusion of platelets. He did get 2 shots for red blood count. He also had to wait longer between rounds due to low blood count. He slept a couple of days after the 1st 2 but slept constantly after the last two rounds.

The doc stopped chemo because he said it was too toxic for him. He said that 4 rounds were enough( I hope he is right). The tumor in Gianni's lung did reduce in size. ( we were told the chemo should stop the growth and hopefully reduce it.) His next MRI-brain and cat scan-body is the first week of April to see what's up. He is not on anything now.

E-mail me if you want more details. I'd like to hear about your mom's treatment.

Rosanne

Rosa@twmi.rr.com

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  • 2 weeks later...

Zimba,

You have to think positive! I am a 45 yr old female dx 4/11/02 with stage IV lung cancer - right lung (NSCLC) with mets to the brain (8). I was told I was classified uncurable and unoperable and I should get my affairs in order. I got rid of that doctor - I have three boys to take care of (5, 15, 17) and my husband wasn't handling this very well. I got a good team of doctors and within a week my doctors had me getting 14 whole brain radiations and recommended me to NYU in New York City for the gamma knife procedure. Had that done on an outpatient basis and was at a meeting that night. Currently the brain mets have reduced in size over 70%. I currently work 8 to 10 hours a day and I was not going to let this beat me - "too busy to be sick".

I started on chemo in May 2002 with taxol/carbo - went through 3 treatments - this did not work. Doctor switched me to Taxotere starting in July 2002 until October 2002. Doctor saw some decrease in size but was not happy - switched me to Gemzar. My original tumor size was

3.5 cm x 2.7 cm. I just got results from my cat scan on March 21, 2003 - my right upper lobe mass had decreased in size substantially - 1.9 cm x 1.3 cm. I also started taking Enzymatic Therapy IP-6 with Maitake & POA Cat's Claw - Cell Forte Max3 in October - 16 capsules per day - I swear by it - it even cured my allegeries! I had no side effects with Gemzar.

Currently I look forward to the future - going to be assistant coach for my little guy for Tee Ball and celebrating my first anniverary of living April 11th.

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  • 7 months later...

Hi All

Well 10months after my moms diagnosis - she has only had 1 round of chemo (gemzar & Carbo) which shrunk the tumors in her lungs slightly.

She has coped admirably until recently. Very active - breezed through the chemo and then had her 2 month break to recover. Well that was actually 4 months ago with the public health service dragging their heels about more treatment.

About a month ago she suddenly went downhil fast - stopped eating, lost huge amounts of weight and had problems communicating and understanding. The last 2 weeks were the worst as it looked like she would have to go to a hospice because there was no way she could look after herself. She refused to co-operate, eat, take medication etc. The consultant and her GP said there was nothing further they could do - she was past help. This was so hard to accept given how well she had coped to date. I managed to get her to see a consultant at Cancer Research UK who explained most likely it had spread to the brain and that there was no way she could cope with treatment. However she prescribed some steroids to see if they helped.

Withing 2 days of starting the steroids (a real battle to get her to take them) - she suddenly came back from whatever world she had been living in. She has virtually no memory of the last 2 weeks but has started eating and looking after herself again. A complete transformation which unfortunately confirmed the fact that there must be swelling in her brain caused by cancer. She had a brain scan a week ago and saw the consultant again on Thursday this week.

Although she was so much better, active, communicating and ha sput on weight - they have still decided not to offer her any more treatment because the brain scan confirmed that she has several mets to the brain. She has to see a radiologist next week to discuss the pro's and cons of having radiation to the brain but either way no more chemo'. We have the feeling they don't want her to have radiation either.

What is the usual position with this on private medical treatment? Would you have radiation treatment to the brain and chemo' at the same time?

Does chemo help mets to the brain? They say the only other treatment available in the UK is Taxol which is not worth it because she is too far gone!?!?!? But she is so well again - out shopping every day, walking a mile or more - doing all the housework etc. Only her breathing is bad but a new stronger inhaler seems to be helping that considerably.

I would have thought she was a prime canditate for Iressa but it is not available here. Any thoughts or advice??

Many thanks

Zimbo

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I hope some of the others answer your question about brain mets, because there are things that are done besides just chemo. There is gamma knife and other things but Im not knowledgeable about any of them. I would go to the top of this page where it says search and put in "brain mets" or "gamma knife" and find out what the "experts" have to say. I dont know if these treatments are for her but its worth a try. Also, my father will be having IMRT next week,(see link below) its a form of radiation that just targets the tumor so surrounding tissue is not affected, not sure if its done in the brain, but might be worth asking about or stereotactic radiosurgery (I think this is similar to IMRT, but not sure). My father is not a great chemo candidate as he had two bouts with lymphoma and a stem cell transplant so I am always looking for other options. Keep us posted.

Radiation Therapy

Arnold M. Markoe, M.D., Sc.D., is professor and chairman of the Department of Radiation Oncology at the University of Miami School of Medicine.

• Call Dr. Markoe at (305) 243-4319

• More information

Frequently Asked Questions:

Arnold M. Markoe, M.D.

Dr. Markoe has practiced IMRT (modulated radiation therapy) for four years.

What is IMRT?

Intensity modulated radiation therapy (IMRT) is a revolutionary type of external beam treatment that is able to conform radiation to the size, shape and location of a tumor.

How is IMRT different from other kinds of radiation treatment?

Although IMRT uses X-rays from linear accelerators just like other types of radiation treatment, it tries to treat non-uniformly so the target(s) get high doses and normal tissues are spared.

How does this impact me?

If normal tissues get less of a dose, the chances of side effects for the same dose to the cancer goes down. If the side effects are less, this means you can give the cancer more dose, which may lead to better control.

What cancers can be treated by IMRT?

Theoretically, all cancer can be treated by IMRT, but realistically we treat cancers where we want to protect adjacent tissues and their formation.

Will this treatment be covered by my insurance?

Many companies fully cover this type of treatment but you or your doctor should make sure. Medicad does not cover all tumors for treatment by IMRT.

Can you treat lung cancer by IMRT?

Yes, but you need to make sure that the tumor stays where you planned it. This is done by getting the accelerator to deliver doses only at action motions of the breathing cycle.

Does IMRT cost the same as non-IMRT radiation?

No, IMRT is highly technical and physician-intensive. Because of this, the costs are higher than more conventional radiation treatments.

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Zimbo,

My husband had 3 mets to the brain and had whole head radiation. That was back in 02/03 and so far no reoccurances. Per the radiation onc if they show back their ugly self, we will try radio surgery. That is where they go in an zap each tumor. Not sure how many tumors can be zapped at one time though.

will say some prayer for your mom and glad I am not in the UK for my husband.....sitting around waiting is not one of my good points.

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Only certain chemo can cross the blood-brain barrier. The article below is about primary brain tumors not mets, but it has some good info

http://www.cancerhelp.org.uk/help/default.asp?page=5332

There is a drug called Temozolomide with whole brain radiation. I think it is a radiosensitizer. There are other radiosensitizers

http://www.medscape.com/viewarticle/460523

If there are too many mets in the brain I don't think gamma knife can be used. At least it wasnt in my mom's case. Sometimes the radiogists will do whole brain and followed by focusing on the tumor using gamma knife or something similar

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