• Who to trust

    Asked by greensmythe on Tuesday, January 1, 2013

    Who to trust

    On November 12, 2012 I was diagnosed with Stage IV NSCLC Bac (which I have since been told by my current oncologist is no longer the correct term. After going for two opinions and not comfortable with either, I chose a third option, an integrative approach with a team approach including an oncologist, naturopathic oncologist, dietician, and cancer counseling services.
    Because it had been six weeks since initial diagnosis this new onc requested a new CT scan that was conducted on December 27.
    Yesterday I had my appointment with her and saw my scans (for the first time) this scan showed that there had been no progression and in fact one of the tumors had shrunk (no significantly according to oncologist). The cancer is confined to my lungs and has not spread to any other organs. There are tumors (all under 1 cm in both lungs) and one that that was 4 cm but has shrunk to 3.7cm. –this is why it is classified Stage IV.
    The first two oncologists were in a big rush to get me into chem

    10 Answers from the Community

    10 answers
    • carm's Avatar

      Greensmythe, Happy New Year! I'm not sure of your question but let me try and answer it. Whether or not they still call it BAC or not, if it is NSCSL Bronchioalveolar Carcinoma it is confined to the inside of the lung and not the plueral space. It is staged a bit differently because of the confinement and so staged more by size of lesions. This type of cancer responds extremely well to chemotherapy so if your tumor burden has decreased, I'm not suprised. I have a feeling I might know where you are getting treatment and I hope you remain cautious. You pay dearly for the advice and care you get so question everything and hold them accountable for every suggestion. You deserve the rationale behind each recommendation. If you are being treated in a "For Profit" hospital always remember that their biggest concern is their bottom line. Tread cautiously. BAC is easy to treat and the outcome is usually always successful. Although it is referred to as the mystery lung cancer, its succesful outcome is not a mystery to health care providers. You have a right to question your prior care but question them all and don't fall in to that cure that comes because of that multidisciplinary approach. It could happen no matter who is on your team. Best of luck to you, Carm.

      almost 4 years ago
    • nancyjac's Avatar

      Stage 4 non-small cell lung cancer defines a tumor of any size that has spread (metastasized) to another region of the body or to another lobe of the lungs. So your lung cancer is stage 4, not because of the 4 cm tumor, but because it has spread throughout both lungs.

      Trust is a personal issue, so if you are comfortable with the this latest oncologist, then by all means go with her but I would consider carefully whether delaying chemo is just something you want to hear, or whether it is actually the best professional medical recommendation for your cancer.

      almost 4 years ago
    • abrub's Avatar

      Note that unless CT scans line up exactly (an impossible task) the same tumor may appear differently sized on 2 scans done the same day (unless you have both ends of the tumor in the scan.) A CT scans in slices - perhaps 6 mm, so something smaller than that may be missed in a CT if it falls between the slices. Also, something larger may appear differently sized depending on where it falls in the slices in a given CT.

      Still, it is important to trust your onc, and as Carm says, get the rationale for every procedure/treatment. I also agree with Nancyjac re postponing chemo. I know we all want to hear it isn't necessary because chemo is miserable. However, chemo is proven despite its many problems.

      Do what feels right to you.

      almost 4 years ago
    • gwendolyn's Avatar

      I don't have specific knowledge about your type of cancer but I will offer some general opinions: I would not distrust any of the doctors just because they used different terminology or classify your stage differently. I would not distrust one CT scan over another just because the tumors were measured slightly smaller or larger. The staging based on a certain tumor size is just an arbitrary classification and it sounds like you are on the borderline of two stages. I would not distrust doctors who seem to be "in a big rush" to start chemo. I would assume they had your best interests in mind. Everyone knows that chemo can be a harsh treatment to endure, but it is the standard of care. Having said all this, I am not insensitive to your concerns. Everyone diagnosed with cancer is mad and scared. I know I was.

      almost 4 years ago
    • Harry's Avatar

      About the terminology issue, that's not something that you need to be concerned about. Docs are always redefining what they mean. My own cancer has two names for that reason. Technically it's lymphoplasmacytic lymphoma, but a lot of people, including myself, refer to it as Waldenstrom's macrogobulinemia. The first name is the "official" international designation for the disease. The second name is an older name that both honors the doc who discovered it and describes a symptom. The WM name is still in general use, including use by the top researchers, but any doc could say that it "really" wasn't the correct name. Best is to avoid all concern about what it is called.

      I have a bias toward action, but treatment is not always called for. It sounds like your cancer can be successfully treated and cured so I would want if "killed" off as quickly as possible. On the other hand, this does not sound like a crisis situation so it might help to step back and take a longer look at it.

      I would be careful about getting a lot of CT scans. I know they are important, but they are also a source of radiation. It may be difficult, but question why is THIS scan necessary when there are others.

      What is the relationship between IU Simon and IU Goshen? It sounds to me like they are in the same general system, but that doesn't mean that you get the same care.

      almost 4 years ago
    • Nomadicme's Avatar

      I would go for a consultation with an oncologist at a leading cancer centre (hopefully a key opinion leader in your cancer), even if it means out of pocket, it's just one visit. If you take all your diagnostic papers with you, and make clear you're there for only a consult (treatment would be elsewhere), you're likely to get good advise, and it will make you more comfortable in choosing treatment.

      almost 4 years ago
    • SueRae1's Avatar

      Lots of great answers. Congrats on the fact that your cancer is stable. As others have mentioned state 4 or advanced cancer means it has Metastasized beyond the original site. I have a similar story - with Kidney cancer, which is currently being treated as a chronic condition. 5 small lesions were discovered on my liver 14 years after my nephrectomy (I was clean all that time) - 3 of the lesions are gone 2 have been stable for 3 years. I am also being treated for stage 4 trip neg breast cancer, 1 lesion on my liver, which is responding to treatment.

      BTW I was taking taking oral chemo for the kidney cancer, and am on Avistan to treat both cancers.

      almost 4 years ago
    • lkirchner's Avatar

      I was diagnosed June 2012 with Stage IV NSCLC. I have had 6 chemotherapy treatments and am now on maintenance chemo, which I will be on for the rest of my life. I am getting along real well, but I am interested in an integrative approach. I live 30 miles from Fort Wayne, IN. Can you please send me some info on your naturopathic oncologist and your other team ?
      Thank you,

      almost 4 years ago
    • Peroll's Avatar

      The team approach is a good way to go, the more people you have working the problem the more options and beter chances you will have. Trust with your doctors is the most important thing you can have now so taking time to find the right ones for you is important. You need to be able to communicate with then in a two way manner and you need to be able to undetrstand what they tell you and be comfortable asking any and all questions you have and be able to get answers you can understand.

      As for the tumor size measurement the 3mm shrinkage is well within the percision of a CT scan thus it is impossible to know if the tumor has really changed in size. At normal growth rates in 6 weeks it would be quite possible that there would be no detectable growth so the results you got are not out of the ordinary. If you want I can provide a detailed explanation on the accuracy of CT scans.

      I can understand how the Oncologists what to get you into chemo quickly, your tumors are still on the small side but since there are several chemo treats a wide area. The sooner chemo starts the better the chance that it works as chemo can have problems penetrating large tumors.

      Good Ljuck adn let us knowow it goes and if you have any more questions.

      almost 4 years ago
    • GregP_WN's Avatar

      As you study your options on this, here is our page to Lung Cancer for some more information for you, this may help you a little. Information never hurts.

      almost 4 years ago

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