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Thread: Squamous Cell LC with occult primary

  1. #101
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    I can’t take Cisplatin because I have serious hearing issues. Well, I could take it, but the results probably wouldn’t be pretty.

  2. #102
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    I just got a call from Moffitt. The head and neck surgeon I saw (when I declined the exploratory surgery/panendoscopy) was on the phone (herself) telling me that the urology oncologists thought the tiny 4mm spot in my kidney was potentially a primary (it has not changed in size in two years, but did glow on the PET scan). The thing is I think it might indeed be an indolent second cancer (incidentaloma), but have a hard time believing this is a squamous cell carcinoma in the kidney. SCC in the kidney is extremely rare. I just read an article that there are only 57 documented cases of this cancer in the literature. Moreover, this tiny spot is in my left kidney and all my involved lymph nodes are clustered together in my upper thorax on the right. I thought squamous cell carcinoma tended to spread locally and regionally, not skip from my kidney up to my upper thorax on the opposite side of my body.

    Also, this kind of cancer is apparently difficult to image and my spot is in a suspicious area (in or near the collecting system). However, this cancer is almost always highly aggressive (which mind does not seem to be) and associated with kidney stones (of which I have none).

    So, they want me to be worked up for this. The first step involves a special CT scan — a CT urogram. However, I have just read that this cancer can only be diagnosed via an operation (difficult to biopsy and the imaging results are always inconclusive). I am not even sure I want to start down this road.

    Are they expecting me to have exploratory surgery in my kidney right before starting chemo? Yeah, like that’s going to be a good idea.

    So, I told them I wanted to speak to a urology specialist before I just went ahead and had the imaging done. Of course, this will mean yet another entire day of my life sacrificed to the quest for the tumor (Moffitt is two hours from chez moi.)

    Oh yes, and I have a hearing test tomorrow. That will take me to 14 different tests or procedures (excluding blood tests) done on me in the last two months. If I have the CT urogram, that will be 15.

  3. #103
    Moderator Top User jorola's Avatar
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    Hello Melisande,
    I am the other moderator in the lung forum. My husband had squamous non small lung cancer stage 3b so I thought I might be able to speak to our experience on this. You can read my thread here
    The short story is on Apr 20/14 he was diagnosed and given eight months to live, in Aug that year he was NED - no evidence of disease. In August this year he was 5years NED and discharged from his oncologist and cancer clinic as the chances of it coming back now are slim to none.
    Now he was given cisplatin and etoposide for chemo and I understand you cannot have cisplatin (I spent the morning reading this thread). However when my husband (Mick is his name) saw his oncologist in February this year, his doctor told him had he been diagnosed this year his treatment would be very different. He told Mick about a new immunotherapy drug for squamous non small cell lung cancer. Has any of your doctors mentioned this to you? If not I would strongly suggest you ask about it. I wish I could tell you the name of the drug but my lovely husband doesn't remember (sigh...men). Anyway, I am here to support in any way I can, being a squamous hater and all. Please feel free to ask away and I'll do my best to answer what I can, ok?
    All the best, Jodie
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  4. #104
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    Hi jorola,

    Thanks for reading the whole thread. I really appreciated it! I re-read it myself once or twice found it slow going at times!

    Yes, I’ve already noticed your husband’s excellent story. Thanks for sharing it “in person!” What was your husband’s disease like before you started treatment? Was there already evidence that it was less aggressive or not progressing? Was he asymptotic?

    Yes, I am really quite worried about hearing loss, so Cisplatin is out.

    I did discuss immunotherapy with a few of my oncologists. They are particularly jazzed about Imfinzi (Durvalumab). Apparently virtually 100% of my biopsy tissue expressed PD-L1 suggesting that immunotherapy would be really effective in my case.

    However, there is one big catch and that is that I have autoimmune inner ear disease. In three months of active disease at the end of 2015, I lost virtually all the hearing in my left ear (it is basically dead at all middle and high frequencies— totally beyond the help of hearing aids) and some high frequency hearing in my right. After that 3 month period, I went into total remission and have been there very happily for 3 1/2 years. There is a big risk that the AIED will surge back with immunotherapy and I will lose the rest of my hearing.

    My going-ho oncologists talked of using corticosteroids if the AIED returned, but I do not know if corticosteroids will be effective. I tried two burst-taper courses of Prednisone when I first got AIED and the Prednisone was only effective at the very highest dosages. As soon as I tapered, it lost its effectiveness. (Also Prednisone gave me a serious heart arrhythmia.) What really worked wonders for me and got me into remission (with no medication at all now for two years) was the immunosuppressant Imuran/Azathioprine. But I can’t take that anymore because it eventually gave me drug-induced chronic pancreatitis, which has itself been a life-altering illness. So, the autoimmune disease could roar back and I would not have any guarantees of being able to get it into remission again.

    Of course, if I knew that the immunotherapy would be effective and essentially cure me of my cancer, I would definitely go for it. But even if I seem like a good candidate, there is no way of knowing if I actually will be unless take the risk, try it and see. Also, even if it works really well, it will not work really well indefinitely. Maybe three or four years or more if I am lucky, but probably not 10, 15, 20 years. It just doesn’t work like that. The cancer evolves and eventually surges back.

    Then, I would have to either 1) die of cancer or 2) take more treatments with serious possible side effects while being deaf. If you happen to grow up deaf, that is one thing. But going deaf when you have already build up your life as a non-deaf person is really difficult.

    So, I really wish I didn’t have to deal with all these other issues, but my body is what it is.

    So to sum up, what I am concerned about re: treatment side effects

    1. Losing more hearing
    2. Making my drug-induced pancreatitis worse
    3. Making my drug-induced heart arrhythmia worse.
    4. Having my recurrent diverticulitis and/or UTIs recur.
    5. Peripheral neuropathy (Taxol; I will have the carbotaxol combo)
    6. Esophageal stricture
    7. Vocal damage (my larynx won’t be in the direct field of radiation, but it will be close).

    I am actually not worried about short-term side effects that will resolve after treatment is done. I can really put up with a lot. I had a friend who once said that the adjective “heroic” described me better than anything else. Throw something at me, I can probably deal with it.

    Even long term problems that are more or less stable, I think I will be fine with as long as I have an adequate adjustment period.

    I suppose I mainly worried about triggering some process that will continue to go downhill, or having so many issues at once, it will hard to deal with them all or having a serious problem like deafness, but not having the time to adjust and learn to cope before I have another crisis on my hands.

  5. #105
    Moderator Top User jorola's Avatar
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    Melisande I commend you for wanting to be very involved and pro-active in your treatment. However I think you need to slow down...just a bit. You are obviously very well educated on your medical status/conditions which is very good. Now you need to add in your oncologists and radiologists and whatever other specialists deemed necessary to help you on this journey. They are there to bring their experience to the table. They will advise you of all your options and the consequences of all those options - the side effects that you are concerned about. I realize that is all you are trying to figure out at this moment but trying to do that without the help, information, expertise and support from your cancer team is like trying to do any job without your key tool. The job is a million times tougher if not impossible to do. The other side to this is you need to trust that team's expertise and judgement and that they are doing what is best for you. It appears to me as I read, and I admit I could be reading your posts wrong, that you have doubt in your doctor's abilities. The reason why I say this is no matter what they might think of you question it. True you have a variety of medical conditions unfortunately but you can discuss your concerns with them and as why, despite your medical state, they would suggest that particular path. Then you need to decide if you can put your faith in your team. All I am suggesting is write your concerns down, go through them with your drs and them make an informed decision after hearing why they have proposed that treatment plan. You are right, you have a lot on the line so you owe it to yourself to ensure you have all the information before coming to any conclusion on any treatment plan.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  6. #106
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    Melisande, immmunotheraphy can work great if you are a match for it. Because it is still relatively new, there are still a lot of unanswered questions concerning length of treatment, side effects and how long immuno drugs will remain effective after treatment is stopped, these are some of the unanswered questions.. If you start immunotherapy and have side effects, treatment will probably stop right away.
    Sometimes we have to trust our oncologists knowledge as to what treatment(s) they think will work best for us. I don't look that far down the road on this cancer journey because for now I am NED all because of immuno drugs and even though I did get a serious side effect that I'm still dealing with, I 'm coping. Try not to worry about all the what it's and if this doesn't work, etc. Going into treatment optimistic really helps.
    Linda

  7. #107
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    It is clear that bring optimistic makes it easier on others in one’s social circle and that in and of itself is important, because who wants to be alone?

    Also, bring really stressed out to the point that one is physically tense is obviously not good for one’s health. Conversely, relaxing and being genuinely happy is good.

    However, in order to get to that happy place, I think it is necessary to be attuned to reality (even if this reality is highly uncertain and ambiguous) and not simply being in denial (forcing oneself to be optimistic). In other words, you need to work through the turbulence of the waves of doubt and fear before you can float on the ocean of serenity.

    I have had quite a few people tell me I just need to trust the experts. But, seriously, the oncologist who was pitching the immunotherapy has no experience whatsoever with AIED. Why should I trust him when he doesn’t know anything (and admits as much)?

    Also, I have consulted quite a few oncologists now (7 at last count) and I have noticed a pattern. The local oncologists come across as really confident. They are willing to give statistics and offer positive prognoses (not just about survival but how I will do on certain medications).

    On the other hand, the experts at Moffitt have been much, much more likely to emphasize what they don’t know, which turns out to be a lot. This is not because they aren’t experts, but because so much of cancer treatment and patient response truly is such a mystery. I have been told that there is no real way of knowing how my body or my cancer will respond to treatments. And I believe this is the truth. So instead of simply forcing myself to trust handy authority figures (my oncologists) who self-admittedly do not have the answers to questions I care about (What side effects will I personally have? How will my cancer respond to treatment? Will my tumors recur?), I am doing my best to accept and work through various uncertainties and ambiguities.

  8. #108
    Super Moderator Top User po18guy's Avatar
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    On a very personal level: what do you believe? Do you have a world view, belief system, family or cultural custom, psychological outlook or religion? Faith is normally thought of as a theological virtue, but one must have faith in something or else the journey, if not already lost, is just that much more difficult.

    You can decide to have faith in medicine, the doctors, science itself, the law of odds or even the cosmos or a higher power. But faith can make a huge improvement in one's outlook and I believe, in outcome. I'm a little earthy here, but I have had to prepare for death so many times, and have been disappointed so many times, that I have given up on death. So, I just keep in living.

  9. #109
    Moderator Top User jorola's Avatar
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    Melisande, you did make an informed decision with the local oncologists. You decided that they were not educated enough on your other medical conditions to make you feel safe moving forward with them. What I meant by having faith in the experts was when you decide which provider will be your treatment team going forward (by the way you were talking I assumed it was going to be Moffit) and if you decide to move forward with their recommendation of a treatment plan that the hope is you can place trust in that team. I am sorry if i explained myself poorly.
    Doctors do give stats as it gives what has been observed so far with medications. Is it every possibility? Heck no but at least it is an idea of what people have experienced. Of course you may have some or none of these side effects. This is how they know some chemos like cisplatin maybe unsuitable for you because it may cause further hearing loss for you - documentation of statistics of other patients experiences with medications. Moffit drs are right - there is no way to tell how you will react. You are made up of chemicals and introducing more chemical will cause a reaction. Whether it be very unique to you or if you will have several effects also experienced others will only be known after you take the medication. I do not think the local oncologists were trying to mislead you in any way. Rather they were only answering one of the hardest questions asked of them the best way they could. However as I was not there I cannot say for certain on any of your conversations with your drs.
    You know of my hubby's story. For Mick, a very intelligent man, had little faith in the medication profession before. When he met with his oncologist, they had a deep conversation where the dr answered all questions openly and honestly yet said the odds were against Mick surviving. Still he was not ready to give up if Mick was not. Mick placed his full trust in the dr and his team right then and there. As you know Mick is now 5 years cancer free. Mick says putting himself in that dr's hands and having a belief that he would beat this were all part of why he is here today and not buried over 4 years ago.
    You have full control over this. This is your body, your life, your disease. I guess my hope is that you do find a treatment team you can lay trust in and kick some cancer butt.
    Wishing you the best.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

 

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