My Doctor's response to small lung met

[vancouver eve]

I visited my Rad. Onc. today and he did an exam on me. I informed him that the last scan showed a possible 6mm lung thing which was not called a met but could possibly be. The Doctor's response was that they don't do anything with lung mets because it is such a terrible operation as well where there is on thing that has spread there are usually more. I informed the doctor quite quickly if I had to travel to the States I would and he just looked at me without a response. Any feedback out there?

[Lee]

Eve,

I believe your going to get responses from people who have HAD (note past tense) lung mets, it my understand there are options including freezing (or something like that). Please remember NOT ALL Drs are current on new procedures. A few yrs back I remember a friend being told there was nothing they could do for her because she had mets to the liver, she is cancer free today. Please consider a 2nd opinion if need. Remember the Mayo Clinic in Scottsdale, you can stay with me it need be.

Lee

[Monique]

Hello Eve,

I am also a Canadian and my dealings with Canadian medical specialists is that they seem to be far less inclined to operate on lung mets than do American specialists (mind, this is information that I've gathered from various cancer boards and so the evidence is anecdotal, perhaps there are some Canadian doctors who would be more inclined to operate?).

I too have lung nodules (3) that my medical team have been monitoring for almost two years. While my oncologist seems fairly hopeful, as does my gastroentologist, the lung specialist is a little less encouraging. Basically, I am still in "wait and see" mode, which, of course is incredibly stressful. Apparently if the lung nodules do not change over a two year period they are considered benign. Further, a great many people have lung nodules (most lung nodules are noncancerous), only, of course, lung nodules exhibited in people with cancer need to be monitored as they have a higher malignancy rate.

Anyway, I know how worrying this can all be, but even if your nodule is a sign of metastasis, the good news is that the chance of operation is much greater with a single nodule then it is with more than one. Also, benign lung nodules can be the result of many different things like histoplasmosis, tuberculosis, lung cysts and vascular abnormalities

Hang in there Eve, and don't let the doctors discourage you.

Best,
Monique

[margotmagoo]

Hi Eve,
I remember watching the Ted Koppel special last May called Living with Cancer. It was a documentary about a friend of his who was fighting Stage IV colon cancer. He received his treatment at Johns Hopkins in Baltimore. He had lung mets, but more than one, and the doctor there did a new experimental procedure to "blast" them. I still have the show on my Tivo and I can reference it for more info if you would like. There is always a solution...you just have to find the Doctor who has it. That is not always an easy task which makes this message board so valuable.
Margot

[shmurciakova]

Hello Eve,

You need to talk to a thoracic surgeon if you want to have this lung nodule biopsied, not a radiation oncologist. Geez, I don't know what to say. It is not a "horrible operation". I had it and I have also had a liver resection and I have to tell you, the liver operation was worse! Besides, they can remove it laproscopically if you want and the recovery time is much less than what I have experienced. How are your chemo treatments going? When will you have another scan? I am not trying to be mean, but I think it is high time that you call your doctors bluff, go to the US and get a second opinion, especially if you have the money and the time. You need to stop listening to all this negative B.S!

-Susan H.

[strongme]

Hi Monique,
I'm also a canadian.
I had a talk with my surgeon today about my upcoming surgery on the local recurrence I have. I asked her about Sugarbaker's surgery and she said thet there is no one in Toronto doing it, but if they realize after the surgery that I need it or anything else that can't be done in toronto, they will send me to the states and it will be covered by OHIP. Check into this information. If some form of treatment is not available in Canada, you'll be referred to the states or any other country where it can be done and the cost will be covered. Good luck.
Did you think about sending your file to hospitals in the States or princess Margaret in Toronto?

[Monique]

Strongme,

Thanks for the info. I will definitely look into your suggestions.

Best wishes,
Monique

[vancouver eve]

Hi Monique,
I read your response and the fact you are Canadian. Do you not consider looking elsewhere for a second opinion? You are able to get the lung met operated on if you choose. It might not be in Canada but the States do things right in Seattle I am told. I hope you respond back to me.

[Monique]

Hi again, Eve

At the moment I'm awaiting my next CT scan, and once I gather the results will decide whether or not to seek a second opinion. If my lung nodules do indeed turn out to be metastasis it's likely that I will seek a second opinion regarding the likelihood of removal.

I want you to know that I know how hard it is waiting for results, and sometimes not always hearing the news that one wishes to hear. Specialists are not exactly known for their bedside manner, moreover, sometimes their suspicions, and treatment options, are wrong. That said, you might find, as time goes on, that your fear will lessen. What really seems to help me is researching all of the different avenues.

Best to you,
Monique

[vancouver eve]

Hi Monique
I just heard from a friend who informed me that in vancouver and other places jn Canada they do a procedure called IMRT which is similiar to Shaped Beam Radiosurgery. Even though I was at my Rad, Onc. not once did he mention the procedure. According to the information I have it blasts the tumours away. This procedure can be used on any part of the body. I will be asking about it once I finish my chemo. Have you heard about this procedure?

[missjv]

wow i would hate to have to depend on the canadian government to decide which treatments i can get which could save my life. i have followed a couple of young colon cancer patients blogs suzanne aucion and esther hart who had to fight to even get avastin which they did not get when they needed it and had to raise their own money and both young women are dead now. why will the government to allow procedures that can save or extend you life? i could see if they were experimental but if they are proven procedures i think they should be offered. if you can come to the states i would do so. seattle, they have great cancer centers there that offer treatments for cancer. and as far as your doc saying there is no point in removing your mets because of spread that is just not true i have met people who had liver mets resected had lung mets grow and had them resected and have had nothing else pop up at all or for along time. you do not have your lungs covered in cancer you have 1 possible met there is no reason it can't be treated keep looking into other alternatives. according to my 1st onco i should be dead now and im nowhere near death i can assure you i went and found someone to help me and so far it has worked.

missjv

[Monique]

Eve,

I just finished reading an article on shaped beam radiosurgery--it sounds very promising, thanks for the heads up. (Following is a link if anyone else is interested).

http://www.sciencedaily.com/releases/20 ... 154429.htm

When I was undergoing chemo and various procedures what astounded me what how little the doctors knew, and that sometimes things are just a guessing game. I don't mean to insult the medical system, in fact I'd rather have a doctor who says, "We don't know what is going on here," rather than one who claims to know everything. Anyway, one thing I've learned, is that it's important to question one's doctors. For the most part, everyone has been pretty patient with me.

missjv

Actually, the Canadian medical system is pretty decent. For instance, I didn't spend one single penny when undergoing treatment. Nothing. I think like any system it depends upon where you live, who's treating you, and how proactive a patient you are. However, I do totally agree with you regarding the Avastin debacle. I actually had to get special permission to be treated with FOLFOX (as oxaliplatin had not been approved by the Canadian government as a treatment option) That said, apart from having to share my hospital room with men, I was pretty happy with the treatment I received.

Best,
Monique

[missjv]

hi monique,
well im glad you are receiving great care. i was following the stories of 2 young canadian women who had to fight and do their own fundraising just to get the drugs that could help them and sadly neither of them survived and i just wondered how a government could not supply the needed meds to their citizens who need them. i sure hope the united states never has government run medicine it is bad enough here with our rip off health insurance and the insurance companies says who gets what and not the docs the insurance companies run our medical care so i don't know what is worse. now my gastro doc told me there will not be anymore sedation during colonoscopies because the insurance companies say that it is a procedure that requires only mild tranquilization and not complete sedation which is bull crap to those of us who have colonoscopies we need to be asleep. i went through a sigmoidoscopy wide awake and i would have rather eaten nails.

missjv

[Magnolia]

You know, Eve, the thing that's driving me nuts about this whole situation is that no one has yet told you if this thing actually IS a met or not. It seems that, since they don't want to remove it, it doesn't seem to matter. Well it really DOES matter!!!!!! If it's not a met, you're NED, possibly for good. If it is, you have Stage IV disease. It may well still be containable, but active disease nonetheless. You deserve to know something one way or the other. I agree, a thoracic surgeon would be the person to talk to. Can that be arranged? Doctors do tend to recommend the modality they know the most about. It's not deliberate. It's just a natural tendency to gravitate toward what we're most comfortable with and an expert in non-surgical treatments is likely to think in non-surgical terms. That's one of the reasons second opinions are so important. It's less likely for that bias to sneak in twice. But a chest surgeon will give you a whole fresh perspective. Then there's the possibility of checking into what you can get done here.

[strongme]

No, missjv,
I understand your point on the two women from canada but would also like to tell you about my experience:

I'm a canadian and I'm so thankful to the canadian government for free healthcare. I got state of the art treatment. Actually, being a stage 3 patient I had folfox +avastin as a trial. I never had to worry about the cost of the treatment or losing my job and losing my insurance. I feel sorry for people when I read that they can't afford not to work during the chemo because otherwise they'll lose their insurance. I never spent a penny on my treatment and didn't worry about losing my job(insurance). yes, the canadian government has to approve avastin. Several provinces already have approved it. But if you have money you still can get it.
Then when you read messages of the people you also have to take into consideration what hospitals they get their treatment from. Same is in the States. In order to get better treatment patients try to go to the best cancer centers. Same is in Canada. Smaller hospitals can't offer the level of competence the bigger hospitals like princess Margaret in Toronto would. Just like in the States.
I had to go through alot in the last 2 years (just like everyone on this forum) and I'm very thankful that the cost of the treatment wasn't even on my mind and at the same time I got state of the art treatment.

The benefit of having government health care is that everybody gets treatment, not just those with insurance. A considerable portion of the US is without insurance, mostly those in the lower income brackets.

Also, Canadians just like americans have the option of purchasing private health care as a supplement.

Respectfully,

Dina