Dad Stage IV NSCLC Scan results - 1247259

brigitte
Posts:49

Update on my Dad and questions:

Dad completed 4 rounds of chemo 3 weeks ago. Had a scan yesterday and results today. Oncologist said it was mixed. Supraclavicular and neck lymph nodes are all normal and there is a lymph node in medial of chest that has increased in slze by a mm. He said however that there is an enlargement of the adrenal gland (left) but this could possibly have grown between diagnosis and in the month or so before chemo was given.

He recommends 2 weeks break. then 10 days of radiation to what they suspect the primary to be in the lung.....a scan in 8 weeks to monitor the adrenal gland as well....then we will take it from there.

However, the report says that there are multiple adrenal metastases noted - one is new and the other significantly increased in size since previous study although mention was made of this in the previous report.

I think the oncologist was careful in the way he conveyed the results because of my Dad not taking it well.....not in front of the oncologist but to us at home. This I have discussed with the social worker and briefly with the oncologist so that he is aware of this and gives us news taking this into account.

Could the doctors comment (if possible} on the adrenal lesions which measure 2.6 X 2cm superiorly and 2.4 x 1.3 inferiorly.
I googled size of the adrenal gland and its under 1cm but on another site the size differed. Would the size of adrenal lesion mean that the adrenal gland is now overtaken by a mass?

Also a lesion in the right renal lower pole which is new measuring 1.8cm
The oncologist did not mention this at all. Is this an area in the right kidney? What would a lesion mean? Something precancerous or a metastasis?

If possible I would really like to know how to take this result......I know the supraclavicular and neck region lymph nodes being normal is great news, but if you look at the big picture would the new lesions and adrenal mass mean the overall view is not that great?

Brigitte

Forums
Full Archive

Reply # - August 23, 2012, 02:29 PM

catdander
Posts:

Hi Brigette, Sorry it took so long to respond. Not sure why it wasn't on my radar.
It sounds like your dad had a mixed bag of results. I know that isn't what you were hoping for. The word leison is used to describe a mass but not what it is.

I will ask for input from one of our doctors.

I hope your dad if feeling alright.

Janine

Reply # - August 23, 2012, 02:46 PM

brigitte
Posts: 49

Thanks Janine. Dad did not really understand 100 % but did know that the adrenal seemed new. He asked me what I think (once we left the oncologist) and I said I am happy with the fact that the neck and supraclavicular lymph nodes are all normal again, but that the adrenal gland is a bit of a concern but I downplayed it. He seems ok that he needs radiation ....anything as long as its not chemo as he did not cope well with chemo.

Luckily he did not read the report as the report seemed to show quite a bit of metastasis or (lesions) which the doctor did not really say in so many words as I had a chat previously with the social worker and she would have mentioned to the oncologist my Dads violent reaction to each little bit of bad news or feeling ill. I do not want Dad to be discouraged and if at some point things do not seem to be going well, then will possibly get the oncologist to let Dad know.

I did ask him previously to let Dad know that it is Stage IV and what it means and that Dad has to fight and not be discouraged, but he never did this and I do not want to say anything in case I say it in the wrong way.

I am still so new at this.

Reply # - August 23, 2012, 03:24 PM

catdander
Posts:

I know how difficult that road is travel when more news doesn't really mean better outcome. It sounds like his doctor is trying to walk the path without being untruthful. I do not envy you your role in this.
Did you read this article about the benefits of denial? http://cancergrace.org/coping-with-cancer/2009/04/29/denial-coping-mech…
It makes what we already know ok.

Your doing a tremendous job as a daughter,
Janine

Reply # - August 23, 2012, 03:50 PM

dr johnson
Posts: 9

Dear Brigette,

I agree with Janine-you are doing a wonderful job being an informed advocate for your dad as you navigate the twists/turns in his journey. It can be really challenging to manage feelings like disappointment and frustration when everything doesn't go according to the original plan...but I'd say that happens MORE of the time than NOT with lung cancers...

Mixed responses are always hard to interpret--it DOES sound like the chemo caused satisfactory shrinkage in the chest, so why wouldn't the same be true in the abdomen? Unfortunately, some times cancers mutate as they move from lungs to other organs, and become less sensitive to the chemotherapy agents that are causing good responses elsewhere in the body. This may be the case for your dad's cancer. However,you mention that you dad has had a rough time of it with the chemotherapy thus far, so it sounds like your oncologist may want to "finish" up the treatment for his lungs with radiation, and then circle back to that adrenal gland and kidney. If these has grown more on the follow-up scan, I think you could anticipate your oncologist would suggest re-starting chemo again then.

Are there 'little things' that HAVE improved in your Dad's life since starting chemo? I'd point to those as evidence that the chemo HAS helped him in some ways, if any come to mind. Focusing on little positive steps from now until that the next scan might be one way to improve his morale somewhat (I know this may be very hard to do...)

Good luck,
Dr Johnson

Reply # - August 24, 2012, 02:40 AM

brigitte
Posts: 49

Thanks Janine will have a look at the link you provided.

Dr Johnson, my Dad was a seemingly very healthy fit 69 yr old before treatment and the treatment has really worked a number on him, so unfortunately although Dad seems relieved the chemo worked in one region, the most positive thing about the chemo in his eyes is that its finished for now. :lol:

He is busy having a blood transfusion now and is feeling very happy that he does not have to stay in hospital again at this time and is looking forward to the 2 weeks before radiation.

Is it possible for the docs here voice an opinion on how long one could possibly survive without any treatment vs treating this cancer in a case like my Dads or is it very difficult even as the treating oncologist to predict possible outcomes.

Friends and acquaintances around me always tell me x has cancer and doctor says he has 6 months or x amount of time. I just wonder why I cannot find out more or less what to expect. I feel like I cannot support my Dad fully and help make good decisions for him and treatment when I feel like an important piece of the puzzle is missing.

Sorry I think I am asking too much of everyone, but I feel I would be failing in my duty if I did not least try and get as much info as possible.

Thank you for your replies

Reply # - August 24, 2012, 07:56 AM

catdander
Posts:

There will always be important pieces missing from this puzzle. Most of them it seems, including the one about how long your dad has to live with and without treatment. It's impossible to give a good guess. But you can get one that shows you how the largest group of people do. That leaves out a large number of outlayer though.

If it's ok we will let Dr. West field this question during his rounds tonight or maybe Jim this afternoon. I don't mind hearing stats but I don't want to actively do a search either; I hope you understand. You might want to give the search a try yourself.

Janine

Reply # - August 24, 2012, 09:44 AM

brigitte
Posts: 49

Yes Janine of course I understand. Not everyone wants or needs to know details. For me however I feel it quite important. I have googled stats and what I have found is quite old and I also do understand that even with Stage IV you get people who have defied the odds.

Maybe if the doctors are willing to give me some idea of what they have experienced in general of people like my Dad (they most probably would know more up to date general stats) I really would appreciate it. Publically many might not want to see this so even a short pm would help.

If this is crossing over into an area which should not be delved into in the cancergrace forums, I humbly apologise and understand if no comments could be made.

Brigitte

Reply # - August 24, 2012, 10:52 AM

certain spring
Posts: 762

I think there are tactful ways of presenting the statistics - Dr Weiss has a good technique where he leaves a gap in his post so that anyone who doesn't want to see the figures can stop reading.
Brigitte, this reminds me that Dr Weiss did actually provide some information (and a graph) on survival with and without chemotherapy on your earlier thread:
http://cancergrace.org/lung/topic/aaa-and-adenocarcinoma/#post-9955
Obviously this is none of my business but I can't help feeling that your father's oncologist should talk to your father about the extent of his cancer and what it means for his life expectancy. We were discussing this back in May. It's true that doctors can't be exact but they can give general time-frames.
One specific point that might be worth clarifying with the oncologist is whether the cancer has in fact spread to the kidney, as you mentioned might be the case in your first post on this thread.
I am sorry your father had a hard time with the chemo. He will feel better as his blood counts recover - the transfusion should help with that. It helps to have little things to look forward to, such as treats or outings ("when I feel better I will do x"). Best wishes.

Reply # - August 24, 2012, 03:26 PM

brigitte
Posts: 49

certain spring I remember the post you are referring to and was hoping for something more recent.

I don't mind you giving an opinion, but here we have slightly different opinions. I want the oncologist to tell my Dad his cancer is stage IV and that he should play his part in getting the best outcome possible.

As far as life expectancy is concerned at this point in time I do not think it would be beneficial for him to hear exact time frames as he says from time to time when suffering that he wishes he did not get rid of his gun as he wants to shoot himself.

I do not think he will deal with knowing too much at this stage, so its difficult to know what really is the best to do, but I strongly believe he cannot deal with it right now. Maybe at some point in time I might feel differently although I do realise that I really do not have the right to make that decision for him. Once told however it cannot be reversed and unsaid.

The link Janine gave in an earlier post (see below) really makes sense to me. Sometimes the kindest thing to do would be not to say anything. I think where this is concerned one size does not fit all. I have spoken to Dad generally a few months ago and said that if I were ill I would do everything that I have wanted to do but have not yet done. He said that there is nothing special that he really wants to do as he is not one for holidays etc. He likes being at home and just going about his normal life and not being in and out of hospital. This he fears as he hates illnesses even in my Mom and myself. It terrifies him.

[b]Did you read this article about the benefits of denial? http://cancergrace.org/coping-with-cancer/2009/04/29/denial-coping-mech…]

Dad is pushing himself and going out on his usual outings during the day and I have told him that each day he will feel better than the day before. His moods are so volatile....extremes ups and downs. I guess he has every right to be this way.

Brigitte

Reply # - August 24, 2012, 04:54 PM

Dr West
Posts: 4735

I think we can only really point to the stats, which are good at telling how a population of people will do, but they don't tell how an individual person will do. There's a lot of variability within individual cases. In truth, doctors can't tell how long an individual is likely to live when we're talking about months or longer. We can usually give a range of weeks, months, perhaps say probably 4-6 months, etc., but it's just not that accurate. I think it's silly/stupid for a doctor to say that a patient has X months to live, and frankly I more often hear patients and family members relate that this is what was said, even when the doctor gave a more nuanced answer of a range (though yes, I'm sure some doctors are like bad TV movie scripts in presenting some edict that a person "has X months to live"). I think people often hear this because they have heard so many dramatized versions sound this way.

I have personally had a detailed, long discussion in which I presented a projected range to a patient, walked out of the hospital room door to write a note in the chart, then heard her get on the phone to a family member and relay "the doctor said I have X months to live." NO, I DIDN'T!!!

These are projections in which the doctor knows and is caring for the patient. If the doctor doesn't actually know and has never seen the patient, I think it's just not remotely feasible to offer a prognosis, which is why we here really try to steer clear of these wild projections on the GRACE site. This is a situation in which it's definitely important to work with the doctor(s) directly involved.

-Dr. West

Reply # - August 25, 2012, 02:26 AM

brigitte
Posts: 49

Dr West thanks for clarifying this. I thought it strange that ppl were told x amount of time and I felt left in the dark. What you said makes sense and I suppose if one one hears general stats maybe family members can misunderstand and think that it is written in stone and applies to their loved one.

I read about Stage Iv and advanced cancer but not sure what that means and if that applies to my Dad and I have so many unanswered questions, but I will put on my big girl panties and try and find an opportunity to see and speak with the oncologist and try and get my questions answered (of course when my Dad is not around) by the person who is most able to hopefully give me direct answers and explain the situation.

Even though he is not well from losing weight due to inability to eat due to the chemo, Dad is improving daily so its not all doom and gloom right now. Just hoping he can put on some weight.

Brigitte

Reply # - August 25, 2012, 08:15 AM

brigitte
Posts: 49

Have not seen this before.....have read something similar though, but its very informative. Would all previous articles relevant to lung cancer be under the Focused Cancer Info -Lung Cancer? If you know of any articles here about metastasis to the adrenal gland and kidney would love to be pointed in that direction.

Much appreciated.

Reply # - August 25, 2012, 09:51 AM

catdander
Posts:

Yes, that's exactly right. when you get from focused cancer into to lung cancer there is a drop down menu that you can use to get to topics like Metastatic/Recurrent NSCLC, First Line and metastatic/recurrent NSCLC, second line and later.
That's where all the blog post are can be found.

Good Luck

Previous PostNext Post