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LUNG CANCER


victor
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Norman,et al.

This Wednesday,10 Aout, I will meet with my pomonologist again. She is a beautiful intelligent woman from Brittany.

The night before our apt., she will have a group conference at the CHRU where, as you are certainly aware, the whole team discusses treatment possibilities for their patients.

I had contacted CSF over a week ago and the woman, I was assigned to offered to come with me. However, I do not feel comfortable with her (and perhaps my doctor may not either) as she refuses to disclose even the amount of training she has had to assist me in comprehending the discussion between me and my doctor and knows nothing about the Montpellier hospital system. I strongly believe that your experience and others on our site offer my best and trusted guides along with the doctors that I have interacted with to date.

I will leave her a message tomorrow letting her know that I feel more comfortable going it alone and cut off contact with that group. It is very unnerving that they, total strangers, want all kinds of information from me, but then say it is their policy to maintain a "professional" distance. Furthermore, I do not appreciate the fact that it feels like she treats me as an invalid. I did not feel positive about her from our very first telephone discussion. As an attorney, I have learned to trust my instincts

Anyway, I sure feel better now about my decision. I will send an update from my meeting soon. I also want to ask her about a possible consult with Dr. Flori who you recommended. Maybe he has some ideas about assisting me in getting stronger.

A bien tot
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I briefly posted and then deleted a rather mean-spirited criticism of CSF

I deleted it because I don't wish to influence your choice of whether you use them or not.

They may be able to provide helpful language support.

My main reservation is that they are not professional medical people and it is important to keep that in mind, but if they can help you please take no notice of me.

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Grecian,

I would not characterize myself as brave, but rather unable to comprehend the possible consequences of being super sick and not being able to care for my dogs in a responsible manner. They need grooming and attention so badly.I no longer have the energy to care for them correctly.

Actually, for a long time, I have been very disappointed the way my retirement which was my dream of finally living in France, turned out. Both my spouse and son have caused me too much stress and grief. There have been many times that if I did not have my dogs, I would just have cashed out.My spouse is a kind and gentle person, however, it has always been my responsibility to handle things. Maybe that is why he wanted to marry an attorney. We arrived in France about two weeks before 9/11. Guess that was not a good omen.

I have read your post and others several times and you are all the ones who are brave. I have learned so much from each of you. Take care and will update soon.
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Norman,

Actually, your post did not influence my decision. The reason that I wrote you about them was due to my own

unease with the woman they assigned.

My spoken French is not so bad, and my pomonologist is very patient. I felt uneasy about having this stranger involved in my doctor/patient relationship. My decision was primarily based on the fact that she felt that I had no right to know about her prior experience and training.

I have emailed her to cancel the meeting and to demand that she shred all my personal information.

By the way, I ordered that tomorrow be sunny for you.

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Hi Victor, I'm not sure where you are based but am guessing near Montpellier?? If so, have you considered having treatment at the Oncopole in Toulouse? It is a centre of excellence like the Royal Marsden and only treat cancer patients.

I've had 8 years of treatment with them and fully recommend the centre.

Thankfully all is well for me at the moment, in remission, so I wish you the very best for your treatments.
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Hi

My OH was also diagnosed with prostate cancer. Thanks for the link for PomiT. Have read several times about turmeric in particular.

Can you tell me where you get the tabs? Are they available in France under that name or do you send away for them?

Laurier
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I usually order them from amazon.co.uk. They are also on amazon.fr but they have always been cheaper on the uk site. One time they sent me Pomi-phenol which although similar is not the same. When I came to send them back the return cost was above the Amazon limit. I phoned and told them and they said not to bother sending them but to dispose of them as I wish. They go the same way as the PomiT, down me neck!! They were about £70!!

I had to take a good friend to the Oncopol in Toulouse a week or so back. It's just opposite the Clinic Medipol where I had my partial wrist fusion done. A weird looking complex, but my! What a high tech place. A very good reputation too. Another plus is that it's easy to get to from the east.

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mogs,

We are a little over two hours from Toulouse. I will check them out and perhaps Norman or others can respond if they have any knowledge regarding them.

The major issue is the distance and being so far from my dogs. Montpellier is only 20 minutes away and my generalist is in the next village.

Good to hear that you are in remission.
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The Toulouse clinic has a very good reputation.

It is part of the same network of Regional Centres as the ICM in Montpellier:

http://www.unicancer.fr/en/french-comprehensive-cancer-centers-near-you

They are intended as a network of centres of excellence in research and treatment across France.

Sometimes different centres have different specialisms so it can be worth checking them both out. I am lucky in that the 2 Cancers I have had were both very much ones that came into the work done by the Montpellier one, so I didn't need to go to Toulouse, but I may do later if I move nearer and further from Montpellier which is on the cards.

Both Toulouse and Montpellier are among the best 10 centres in France, and I imagine that in Toulouse as I know to  be the case in Montpellier the centre combines with the other hospitals that make up the group of teaching hospitals. CHRU (the U shows it is part of a University hospital, and so a teaching one)

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Thanks Jonzjob. Will look on Amazon.

Am interested in the cancer hospital mentioned.

My OH went to Baclesse in Caen which we were told was one of the 10 cancer hospitals in France. I wonder how that rates with the one you mention.

It's just interesting to read of different places, and their standing in different cancers, in case the need arises in the future.

Laurier
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Victor

I am 2 1/2 hours away from the Oncopole in Toulouse, yes the journey can be tiring but theyve always given me a bon de transport because of the distance.

They really are excellent, I couldn't recommend them enough for cancer treatment. If you decide to take treatment you want the best options.

I'm sure your dogs will adapt when you havè to leave them for a day, failing that do you have anyone who might be able to let them out

Good luck
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Thanks Norman - yes, just seen the link. Very reassuring. We did think Baclesse was excellent and our drivers (ambulanciers) all spoke very highly of it. We did think we were very lucky to be in a place where we could get bon de transport to such a hospital and then have treatment which seemed so thorough and caring. Even though the journey was quite long, every day, it was worth it and getting the transport made a huge difference, physically and mentally.

Laurier
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  • 2 weeks later...
Here is my update.

Saw the pumonologist the 10th of August and she said she was having a group consultation the 16th. When I was at her office she was very firm that radiology was the way to go because I was so physically weak.

She made an appointment for me to go to Montpellier on the 19th to speak to an oncologist. I went this morning and had to wait over 30 minutes to see him. I gave him her letter and then asked him a few questions;e.g., what stage was the tumer, how did he know, and possible treatments. We spoke in English as I wanted to make sure both he and I understood.

His only response was that due to the fact that my upper lungs were weak from emphasema, they could only do radiology. I asked why.His reply was that if they invaded the lungs, I would die. I asked how he knew the stage, etc, he said from the PET scan.

Further, he said if I had a biopsy, I could die because of the weakness of my lungs. I could die even from a needle biopsy. Now one has 5 lobes and the Pet scan shows the tumor confined to the upper left lobe and less than 3 mm.

He did not even address, any attempts to strengthen my lungs before doing tests that are valuable before any treatment decisions. His mind was made up!

Since my pumomologist had already recommended radiation, I am at a loss as to why I wasted a whole morning going to Montpellier.

He basically said his way, or maybe I had two years with no treatment.

This was the first time that I had been told by anyone that my lungs could not withstand surgery. The tumor is only in the upper left lobe and the lower lobes are not very weak from emphasema.

Will see my generalist Monday and ask about Toulouse. I know that no matter what, he will make sure that I do not suffer.

Maybe, I should just continue smoking until the emphasema and or tumor kill me.

Norman what, if anything, do you know , about the lung cancer unit in Toulouse. In my opinion, more tests should have been done, and surgery would be the most efficient method of getting rid of the tumor followed by

work on getting the lungs stronger. I am aware that emphasema cannot be cured, but it can be controlled.
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I was at the ICM this morning, ( the 19th also)  in the Radiology building (D) with an appointment to see the Dr Flori I mentioned.

My radiologist there was Dr Azria, but I haven't seen him for a while since I am in remission from that cancer.

The reason for going to Montpellier was that if your Pneumologue recommends radiotherapy that is the most likely place to have it done as they have the most modern techniques.

http://www.icm.unicancer.fr/fr/soins/radiotherapie-oncologique

What you experienced today is the brusque technical efficiency which can take precedence over the human relations side of treatment among the highest-level specialists. I am sure he knows what he is talking about, but there can be tunnel vision. I have followed their advice which sometimes went against my intuition and have come out ok, but of course you have the right to second and third opinions.

I have no first-hand experience of Toulouse I'm afraid, but have had good reports from people who have been treated there. I am not sure that you will find a different diagnosis, but you might find a Doctor to whom you relate better.

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Norman,

I suspect we may have crossed paths. Wish I could have met you! My appointment was at 11:00, and I waited until 11:34 before I went back to the admissions and complained, and Mr. Beguier showed up there and I told him off politely. After all I did have to leave home at 9:45. He did not even apologize.

Anyway, I was in his office for about one hour, and he basically said I had no choice but radiation. He seemed unable to answer any of my questions like what stad was my cancer, etc. Maybe women are supposed to be stupid, and after all the doctor is king. I asked him about tests and all he could say was that even if they did a needle biospsy, my lungs would collaspe and I would die. He did not explain the basis of his conclusion. He said no radiadition, and you may have two years. Maybe Montpellier needs to use their expensive new machines. No wonder CPAM is in the red.

Since my pumonologist had already said radiation was the only way to go daily for around a month, why did I even need to see him? What a farce.

I will see my generalist tomorrow, and we will discuss the "visit". As you can tell, I was pissed. On the whole, I do not trust allopathic doctors. Guess that is obvious.

My generalist and I discuss allopathic and other types of natural remedies for people and for our animals.

I do want to ask him about seeing a chest surgeon and your Doctor Flori. Also interesting, the Doctor, my Doctor wrote to is in the same office as the pumo I saw, and I also noted that he was on the panel she presented my case at.
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Norman,

I suspect we may have crossed paths. Wish I could have met you! My appointment was at 11:00, and I waited until 11:34 before I went back to the admissions and complained, and Mr. Beguier showed up there and I told him off politely. After all I did have to leave home at 9:45. He did not even apologize.

Anyway, I was in his office for about one hour, and he basically said I had no choice but radiation. He seemed unable to answer any of my questions like what stad was my cancer, etc. Maybe women are supposed to be stupid, and after all the doctor is king. I asked him about tests and all he could say was that even if they did a needle biospsy, my lungs would collaspe and I would die. He did not explain the basis of his conclusion. He said no radiadition, and you may have two years. Maybe Montpellier needs to use their expensive new machines. No wonder CPAM is in the red.

Since my pumonologist had already said radiation was the only way to go daily for around a month, why did I even need to see him? What a farce.

I will see my generalist tomorrow, and we will discuss the "visit". As you can tell, I was pissed. On the whole, I do not trust allopathic doctors. Guess that is obvious.

My generalist and I discuss allopathic and other types of natural remedies for people and for our animals.

I do want to ask him about seeing a chest surgeon and your Doctor Flori. Also interesting, the Doctor, my Doctor wrote to is in the same office as the pumo I saw, and I also noted that he was on the panel she presented my case at.
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I'm afraid that a 30 minute wait for an appointment is something of a record in being extremely short . You should be pleased. I have known delays of over 4 hours especially when it is in surgery.

The worst is when I have a scan and then have to wait for a consultation. I can arrive at 9 am and not get away until the afternoon and of course to get into Montpellier by 9 I have to leave home well before 8 and dont get back until about 4 in the afternoon sometimes. Still that has gone down fromp every 4 months to every 6..

The radiotherapist tend to be better timekeepers. I think it goes with the territory.

Dr flori wasn't all that helpful for me this time. He basically sent me back to someone in Béziers.

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Victor what a strange attitude to late appointments. Four minutes, really and you complained to the Dr too, I am shocked.

There are many reasons why any doctor could be running late. Sometimes people are late, we never are, until we were, as there was an accident and a huge traffic jam and there was no way on earth we could planned for that. We were only five minutes late, but as the Dr was running on time were told off, and rightly so and we apologised profusely. Best laid plans!

Sometimes there are emergencies. 

AND more importantly, a good doctor will spend the time that is necessary with a patient and not be clock watching. IS that really how you expect all your current Doctors to be with you. What if you have extra problems, things you really need to discuss, would you really want to be shown the door because your time was up. Sometimes we cannot leave things until the next appointment that extra time is needed, in spite of making other patients appointment's late.

I would expect to be informed if there was going to be more than a 30 minute delay, but that would just be the polite thing for the receptionists to do.

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Norman,

I am sorry that Dr. Flori was not very helpful this time. I know that your travel time is very long. And, I cannot begin to even comprehend the trama you have been through for nine years.

How are you doing? Are you still thinking of moving?

And you are right, 34 minutes is not a long time to wait.

My attitude was due to the fact that I was told to be at reception no later than 10:45 and that my appointment was at 11:00 and to be on time. I was in the waiting room and Begier who is a medical cancer doctor, was in his office and once in a while, he would come out smiling, walk casually down the hall, and slowly return to his office a few minutes later.

I would not have been so brusque if someone had told me he was occupied or if he had apologized for being late. I have had to wait many times for judges, clients, medical appointments, etc. It is the attitude I responded to.
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IDUN,

It was not 4 minutes but 34 minutes. Generally, doctors and other people are late for many reasons.

But he did not apologize. And to make matters worse, I am not a morning person. And no one mentioned their would be a delay.
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I have had the impression for a long time now that

1. the appointment may state a time, but it's really for the date. Time is of no great importance.

2. It's quite normal for medical people to be late, so why appologise for being so.

I agree that it can be upsetting in a stressful situation, but it's the norm this side of the cut. Do you know how long your appointment was booked for? Was it booked for a complete hour?

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I apologise for misreading the time you waited.

 I did wonder how I had seen four minutes and not 34 and looked again on the little  ipad I was using and it isn't clear.

 I think that I am best using my big screen. Sorry again.

And as I said, I do believe that the secretaries should have let you know that he was running late after 30 minutes, but apart from that, I would not personally have complained to the specialist.

Also, I am far from matinal, hate getting up early or doing much in the morning, but sometimes, I have to. My lifestyle choices do not always coincide with the rest of the world.

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  • 4 weeks later...
Hello Michal, I hope that things are as well as can be expected at the moment, I know what you are going through is very stressful.

Since your post regarding B17 I have been searching out information, I guess that you will have done some of your own, so maybe you already know a bit about B17. The only two ways that you can obtain B17 seems to be either by eating the raw apricot seeds, or take them in capsule form. If I understand things correctly laetrile was derived from the apricot seeds and trials were done to test if it would inhibit cancer cells. The drug was then banned by the FDA, maybe they experienced pressure from the major drug companies, who knows. There are a few books about all this for sale on Amazon.

In the UK , US and France you can only get B17 by either eating the apricot seeds, or taking them in capsule form. It is imperative that the seeds are bitter, the sweet seeds do not have the same qualities. You can purchase capsule form Apricot seeds either on UK or French Amazon. If you are contemplating eating the actual seeds, these can be purchased from an excellent company in the US called iherb, just Google the name and you will find their website, there are three different companies selling them on iherb, two are selling the bitter seeds and one sweet ones, so be careful if you purchase them from there.

I think I will be purchasing the actual seeds from iherb, my wife already using them regularly for all our supplements.

Have you decided to start your radiotherapy treatment? I know you are not keen on the conventional treatments.

Wishing you all the very best Michal.
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