• Time between diagnosis and treatment.

    Asked by emmett11 on Monday, March 11, 2013

    Time between diagnosis and treatment.

    I am now a little alarmed with how long this is taking from my Diagnosis,Dec. 8th/12 to any kind of treatment.
    I had my 1st visit with an Oncologist last Monday, he asked me what treatment I was receiving, when I answered none, his eyes flickered a bit and responded that he will start me right away on Chemo.
    He scheduled me for for a PET and a MRI which I had today, the tech also asked me what treatment I was receiving, maybe I am paranoid now, but she looked a little surprised when I said none.
    The Onc scheduled me that Monday for a port this coming Friday so I could start Chemo, I guess.
    The hospital called me this morning to set up an appointment with a Thorasic surgeon this coming April 4th, seems a little far out date wise for a consultation on my current state, which by the way, I still don't know the extent of the cancer in my lung or weather it has spread anywhere.
    Am I being concerned unjustly or is it the way this goes, seems a little drawn out to me.

    11 Answers from the Community

    11 answers
    • Ydnar2xer's Avatar

      I would recommend calling your oncologist, telling him that you have to wait until April 4th for the meeting w/the surgeon. At the very beginning of my chemo, my onc's office staff told me to call FOR ANY QUESTION I HAD--and so I did. Better that you do that than worry yourself over something that may not need be a worry.

      Also--a bit of advice--there's nothing wrong with being your own advocate for good treatment. When in doubt, I ALWAYS ask. Good luck & we'll be thinking positive thoughts!

      over 3 years ago
    • Peroll's Avatar

      Emmett, the time it is taking is a little distrubing but sadly is is not uncommon as things often fall through the cracks and Dr scheules are often full for long periods of time. In these cases the patient has to become his own advocate and make sure that things are getting done. This means always knowing what the next steps are and when the next appointment should be. Often it is overworked assistants that are in charge of scheduling things and ioften communication is a problem that is why I always make sure I know when the next appointment should be made and if I do not hear fromt her right people I follow up to see what is going on. Last fall I was refered to a surgeon for the tumor in my adrenal gland. In early September I was told that the next appointment the Dr had was mid Octiober and that the first surgery date was the endo of October. I pleaded with the assistant and managed to get her to talk to the Dr about an earlier appiontment which was made, I also had her reserve the surgery date at that pooint so it was available which was a good thing as it was whaty I used. I have also had to follow up with communication between Dr assistants and pharmacies to get some of my chemo drugs properly ordered. I am on some rather expensive chemo pills right now that come from a mail order pharmacy and it took several tries to get the perscriptiom to the right place. One other thing I do try and do is make sure that I thank the assistants that help get things scheduled, particularly after I have had to be persistant to get things done. A little good will will almost certainly make things go better the next time. Good Luck and let me know if I can be of more help in getting things moving for you.

      over 3 years ago
    • nancyjac's Avatar

      Who diagnosed your cancer back in December? Was this appointment with the oncologist set up at that time? What seems amiss to me is the 3 month delay between diagnosis and you first appointment with an oncologist. Are you saying nothing went on during those 3 months? I would not be concerned about the consult with the surgeon being a few weeks out. Since you are having chemo before surgery, you will likely still be taking chemo for a while after that Apr 4 appointment, so no time is being lost there.

      I learned a long time ago, that as patients, we need to be our own advocates. You didn't indicate what was going on or if nothing has been going on since your diagnosis 3 months ago, but 3 months ago would have been the time to make sure you got a timely appointment with an oncologist.

      over 3 years ago
    • CAS1's Avatar

      This is exactly my point in why seeking a top level cancer center and a specialist in Lung Cancer is so important.. My fingers are burning because I am so darn angry..
      To be dx in December and only getting treatment NOW..

      The most important thing is to get going on Chemo to help reduce spread. The visit with the surgeon is most likely to get tissue I hope to get your mutation testing done and the PET and MRI is also looking for spread.

      Where were you DX'd and where are you being treated.

      over 3 years ago
    • EllasDaddy's Avatar

      Also you do not HAVE to have the port before chemo treatments. My first round they put in an IV that stayed in for 3 days. I got my port before my 2nd round. Once I was dianosed I was lead to believe the quicker you can start chemo the better your chances. Call your oncologist and request more information on the extent of your cancer. It is YOUR body and you have to right to know.

      over 3 years ago
    • emmett11's Avatar

      Everyone, thank you heart felt for your input.
      I am not able to push any more than I have, outside this hospital's jurisdiction I am at a lose, my insurance is provided by this hospital and affiliates, to that end I have been cautioned both verbally and also in the contract, that any assistance sought outside their purview would cancel my coverage with the district.
      So you see I am confined to the practices of this hospital and the available resources.
      I only hope that with my diet, many anti-oxidants, all natural veggies and fruit, wheat grass, baking soda, vitamins, tea's, eastern powders etc. will somewhat impede any spread of the cancer.
      Again, to all, thank you for your interest, input and care.

      over 3 years ago
    • CrazyHarry's Avatar

      I got the cancer of the butt and from diagnosis to first treatment was about 30 days. I was very concerned the whole time, but all of the doctors seemed to be ok with the delay. As for me, it took 10 days to get the radiation plan set up. I signed up for a clinical trial that delayed things another 10 days. Just finished my first of four phases of treatment of radiation/oral chemo. Waiting a few months for surgery. Finally feeling good.

      One hint that I didn't get was to accept any pain or anxiety medication the team recommends. I had never really been sick and didn't recognize that the symptoms I was having appeared as discomfort but was really pain and anxiety caused by the pain.

      Remember, drugs are your friends.

      over 3 years ago
    • CherylS@StF's Avatar

      I agree with nancyjac in regards to you being your own advocate. Insurance companies cannot punish you for asking questions to be addressed either by your oncologist or his nursing staff. While it is too late to go back in time and get your testing and port placement done earlier and to start your treatment earlier, it is not too late to find out the reasoning behind waiting for your surgical consult. I do believe that the comments stating that more than likely you must have a couple to a few cycles of chemotherapy before a surgical consult can take place. If that is the reason for the delay to April it would be helpful for you to be educated on that reasoning and would make the wait time much easier and acceptable.

      over 3 years ago
    • IFawzy's Avatar

      I think that PET will determine the spread degree of the cancer. In my case, I was diagnosed with non-small cell cancer at around end of January 2013. PET was done at first week of Feb 2013. Cancer in right lung and one adjacent lymph note was confiremed. Radiation therapy commenced on 6 of March 2013. I sometime wonder if cancer was spread during the period between the PET and the commence of radiation. My readiation oncologist is tell me that probably no spread did occure in this short time.!

      over 3 years ago
    • emmett11's Avatar

      IF awzy, thank you for your input.
      I am glad your cancer was caught early and the treatment started so quickly, continued good luck with your recovery.
      You have brought up something I have not been able to address, not the right time to ask the right people.
      Since my diagnosis on 12/08/12, which was confirmed as a 2.7cm growth in my right lung, I have been not able to connect with the right people to move my treatment forward in a timely way, only more tests, another pulmonary test and three cat's, brain, chest and pelvic, was ordered by the Pulmonary doctor which were performed in mid February, two weeks later
      the pulmonary doctor confirmed at that time that I now have a small growth in my left lung and also one on my brain.
      I then had a meeting with an Oncologist two weeks ago and he had asked me what treatment have I had, I was surprised he didn't know that I haven't had any treatment and then ordered the port installed to start chemo but couldn't tell me a date when chemo would start, or answer my question as to what stage my cancer
      He ordered a PET and an MRI for the following Monday( last Monday ), and would have the results that Wednesday, not, I still haven't gotten the results even after repeated phone call to the hospital and to his office(his office never did return my calls).
      I had a port installed yesterday, all involved asked when I was starting chemo, I have no idea when so that was my answer to the nurses and to the doctor installing the port.
      I still don't know anything about my cancer other that I do have cancer for sure, because of the biopsy, in my right lung, not so sure what is going on in my left lung or on/in my brain.
      I have my first meeting with a Thoracic doctor Monday morning, what that is about I don't know, I am hoping he has read my file, unlike the others, and will be able to fill me in on what the @[email redacted] is going on with my case, my cancer, my prospects, the stage I have, my prognosis so I can start to understand what I am up against and plan my life accordingly.
      I ask you, am I being unrealistic in my expectations, this for me at least is a family affair, so it is not only me that is going through this, it is my mother, brothers and sisters, close friends and most of all my most amazing life partner, my wife.
      If there is something I am doing wrong or something I need to be doing that I am not, please feel free to help me out, all will be most gratefully appreciated.
      I hope this has not been whinny, I am only trying to illustrate as to achieve the most accurate advice from those that may have, hopefully not for alls sake, gone through this.
      Perhaps I am unique and will discover a solution to this dilemma and be able to share so as to allow others to avoid it.
      Thanks for listening.

      over 3 years ago
    • MaryTD777's Avatar

      Hi Emmett11,

      I am SO sorry that you have cancer and are getting extra stress trying to get answers. I will say that getting the PET and the Brain MRI are part of getting staged. Staging is based on the size of the tumor(s) ~ If it spread to nearby nodes ~ if it spread to distant places {nodes - organs} and CT / PET do not see tumors in the brain, so that needs to be an MRI. They delay in meeting the surgeon, as others already said, is fine if you will have treatment first to shrink the tumor(s) before he goes in.

      In my case, I was dx officially (I knew in my gut weeks b4) 4/7/11 and went to a cancer center 4/18. They did all of those tests and a surgery to look for near spread (mediastinoscopy) as well as PFT (pulmonary function test) within 2 DAYS to stage me (IIB) and then met with the tumor board next Monday (always on Monday) to discuss who/what/when and decide chemo (2 kinds for 2 rounds) with concurrent rad started 5/5/11- 6/17/11 followed by a 4-6 week wait so everything could settle down b4 they could re-stage for surgery. Surgery was not done until 8/15/11 and they got every bit! All that started with x-ray 3/17 CT 3/18 PET 3/23 Biopsy 4/1 (April fools? ouch *pout*) and Dx via pathologist 4/7/11. Technically that means 3/17 - 5/5 between spot found to treatment started. BTW - my port was put in 20 minutes b4 chemo started EEK! Only cuz I asked for it the day I was told we would start next week - I am glad I thought of it & glad you got it! So much better than IV for ME anyway!

      I DO hope they get there buns in gear AND explain WHY they are moving slowly. It is YOUR RIGHT to ask questions AND get answers. Think of these docs as your employees! If you hired them to fix your house, you wouldn't put up with delays & silent treatment! If you can't speak up, bring your brother, dad, wife ~ someone who can help listen & ask AND keep calm doing it.

      Wishing you ALL THE BEST!!

      over 3 years ago

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