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Justin


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Yes, I completely sympathise on the waiting pain. I wish you all the best for your PET and bronchoscopy (both were fairly uneventful for me). As I am a bit further on and have come to terms with my diagnosis, the anxiety is now around what kind of treatment they will recommend. Where are you being treated? I am at UCLH which is supposedly one of the best places, but would be interesting to compare notes as we go on our treatment plans, as most others on here are US based so reckon there could be some differences to UK-based practices.

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Hi thanks for the reply, I have just had the PET SCAN today, the MRI results came back clear of cancer in my brain so that's a good thing I'm in Dorset but being treated in Somerset, I hope the bronchoscopy is soon even though I'm actually dreading having it done lol, hope your well 

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I didn't find the bronchoscopy to be too bad. Sore throat for a day or two from the breathing tube. You'll need to have someone drive you home (due to the anesthetic) but you should be released in just a few hours.

Glad things are moving along for you.

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Agree with both Lexie and Judy. The bronchoschocopy wasn't at all uncomfortable for me. I'm guessing I will have another in the next few months and am not stressing at all. FWIW.

Peace

Tom

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  • 2 weeks later...

Hi everyone just a quick update, I had the bronchoscopy on Tuesday and wasn't to bad at all, now just have to wait for the results of everything and see what they intend to do, I've been put on a vitamin b12 injection and I have anemia and an infection in my body somewhere so just had a course of antibiotics, many thanks Justin 

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Good to know the testing round is over. The wait is a bit tough as they will want to map your bio markers. Just a word of advice - I ended up waiting around 6 weeks for my treatment plan because there was some mix-up and oncology got my results in drips. So I would advise you to follow up in 2 weeks or so, and then continue to nudge every few days. The NHS is great, but their systems are not always talking to each other. I was too “polite”, and it has meant that I now am redoing most of the scans prior to treatment so they have an up-to-date baseline. Really annoying. But please let us know how you get on!

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Thanks for the reply I'm glad the tests are over I haven't been told anything throughout this so was unsure when I would get results as every time I ask someone they just say the consultant will be in contact, I hope everything goes well for you and the treatment starts soon thanks Justin 

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Great advice as even here in the US the health system isn’t as efficient as it should be.  A good strategy is to eliminate the word “wait”.  If something doesn’t look or feel right, rather than waiting for a situation that may or may not sort itself out, it’s better to be proactive and start asking questions.  

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Justin,

As you're hearing here on the forum, you cannot be a "passenger" on your treatment train, but rather a partner of the team.  So you should always ask when you can expect a result or other information and then (as others have already said) follow up to ensure you get it in a timely manner.  Waiting is never fun, but even less fun when you are concerned about your health so please establish yourself as the "customer" early on.

Lou

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Thanks for replies I had a phone call yesterday from one of the cancer nurses who told me the cancer is in my lymph nodes in the centre of the chest, she also told me I will be treated with radical chemoradiotherapy, I did ask her if she had the results of the PET SCAN and she said she could not read it properly or explain it over the phone in case she makes a mistake, I asked her about the lung biopsy results but she said they haven't got the results in yet, I'm a bit surprised by what she has told me as the respiratory consultant had told me this 2 weeks ago, I thought they needed the lung biopsy results to see what treatment I will have, I just wondered if anyone has had or knows anything about radical chemoradiotherapy, many thanks Justin 

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Hi Justin,

I'm not sure why they wouldn't want to wait for biomarker testing results before starting treatment.  If you have an actionable biomarker, that could mean a completely different treatment plan.  Did they say when they expect the biomarker testing results to be back?

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Hi no they haven't told me anything new really, they did say they haven't had the lung biopsy results yet and that the nurse who rang me couldn't read or explain the the result of the PET SCAN over the phone as she didn't want to make a mistake, she told me I will see an oncology consultant soon and I will be treated with radical chemoradiotherapy but no mention of bio markers 

Many thanks Justin 

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Most nurses will not explain PET results. That's the oncologist's job. You need your biomarker test results. I had chemo and radiation, and with the location of your lymph nodes, esophagitis from radiation would be very likely. Keep pressing for your biomarker results. 

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Thanks, I was more concerned that when the nurse rang me she asked me if I was sat down and had someone with me as she had an update, she went on to tell me that what they had suspected was correct and the cancer was also in my lymph nodes in centre of the chest, I asked about the results of the biopsy and PET SCAN but she didn't know any of those results yet so I was unsure why she had told me what I was already told 2 weeks ago by respiratory consultant also wondered how they came up with the treatment plan of radical chemoradiotherapy without results from the biopsy, everything is just a bit confusing kind regards Justin 

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How very odd that a nurse would call you with this news, and they decide on treatment even before getting results from your biopsy. Just sharing for reference: At that stage (after PET), I was just told that in addition to the tumour, the lymph nodes and adrenal gland appeared to be involved, but that they would have to wait on biopsy results to recommend treatment. In the end, it turned out that I have no actionable bio markers for first line treatment (I do have a KRAS mutation with options for later treatment), but that my PDL numbers are very high, so my treatment will be immunotherapy only, keeping chemo as a fall-back option for later.

Of course, none of us here are oncologists, and I am sure there is an explanation, but I would ask to see an oncologist ASAP and get a thorough explanation as to why they have decided on this course of action already. Also, make sure you get detailed info on the types of chemo you will get as from my understanding they each come with different side effects etc that you may want to be aware of and prepare for.

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Thanks for the reply I didn't know the nurse would be updating me on any results, but even stranger that she didn't have the results of the biopsy and couldn't read the PET SCAN results but told me radical chemoradiotherapy would be the treatment i would have, I just found it all a bit odd. 

Thanks 

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Justin,

I also find your nurse's communication odd. In my 18 years experience with lung cancer treatment, a nurse never explained scan or test reports or suggested treatment. In the United States, these functions are performed by a physician. But the UK National Health System might operate by differently. I do hope you are able to see a physician to gain understanding of your test results and future treatments.

I don't know what radical chemotherapy means. Turning to a dictionary, the word radical contains the definition of "relating to or affecting the fundamental nature of something; far-reaching or thorough." Perhaps the nurse's descriptor of radical implies thorough treatment. Thorough could mean treating cancer throughout the body in several or many locations. Indeed, this is the benefit of chemotherapy; its ability to address cancer throughout the body. Normally one receives a chemotherapy plan that involves the discrete drugs to be used and the interval of use (say Taxol and Carboplatin, 1 infused dose once every 3 weeks.) But, to formulate a chemotherapy treatment plan would presume the type of lung cancer is known (from the biopsy test) because the type of chemotherapy used is keyed to the type of lung cancer one has.

You've described your cancer locations "in the right upper lung" and involving lymph nodes. Depending on the extent of lymph node involvement you might stage at IIIA or IIIB. The latter might take surgery off the table as a treatment modality. And, a PET scan identifying another metastatic site in another part of your body would point to a stage IV diagnosis. Here is more information on lung cancer staging. Some stage IIIB and all stage IV disease are not treated surgically but rather with chemotherapy and perhaps radiation. So, and this is an educated guess, your nurse may have been trying to communicate you had stage IIIB or stage IV disease by using the words radical chemotherapy.

I am trying to offer you an explanation of the nurse's words radical chemotherapy. It is an odd term in my understanding. It would have been far better to have a complete discussion of all your test results with a physician, hopefully a medical oncologist, who would explain test-by-test what is revealed and what the appropriate treatment possibilities are. I do hope you get that kind of diagnostic explanation soon. 

Stay the course.

Tom

 

 

 

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Hi Tom thank you for the reply i really appreciate it and any advice, I'm not sure what the nurse was actually trying to say, as I had already been told by the respiratory Dr 2 weeks ago that i have this, I don't know why they said I would have radical chemoradiotherapy before having the results of the biopsy and I'm not sure about the PET SCAN results as she told me she couldn't read them properly over the phone, I thought I would be updated by an oncologist when all the results were in.

Many thanks Justin 

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15 hours ago, Tom Galli said:

Hi Tom,

Just to clarify on your comment below: I am being treated in the NHS, and at all points has it been my oncologist who discussed results and treatments with me. Likewise, discussions around treatment options have been specific and detailed - nothing like this strange “radical chemotherapy” thing. I have had a few complaints about delays, but every step of my journey so far appears to be well up with best practice. What Justin describes sounds really out of the ordinary and frankly out of line, and I am hoping he gets a more professional response very soon. It’s a stressful time as it is and throwing half-baked info into the mix really isn’t helpful (frankly I am fuming on his behalf).

“But the UK National Health System might operate by differently. I do hope you are able to see a physician to gain understanding of your test results and future treatments.”

 

 

 

 

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Hi everyone I just wanted to update, I have now seen the oncologist and have been told I will start treatment within the next couple of weeks with curable intent, I have some lymph nodes involved on the same side as the tumor but nothing anywhere else, they are starting with chemotherapy and radiotherapy together but are hoping the bio markers will come back with a pdl number so I can have immunotherapy as well i will keep updating 

Thanks Justin 

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Thanks for the update Justin.  Once we get our treatment plans there is always some reduction in anxiety.  I believe it is mostly because we know that "someone is coming to kill off those little sucker cancer cells".  Keep us updated and ask questions as needed.  Good luck buddy.

Lou

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Hi lou thanks for the reply i definitely feel a bit more positive about it all now, I'm not looking forward to the treatment but eager to get started, it definitely helps seeing the consultant and eases the anxiety knowing that someone is trying to help. 

Many thanks Justin 

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