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Husband confused about dx.


sueliz61

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I have not posted since my first post in April, but I do read others posts frequently. I almost feel like I am eavesdropping and I intent to post more frequently in order to feel better about reading others posts.

My husband completed his radiation in April and had a ct scan the beginning of May. It showed a "slight" shrinkage in the tumor in his lung and did not show any new masses or enlarged nodes. The lymph node on his clavical has shrunk a great deal and is now very small- this was not referred to on the scan report - just visual.

He is now doing chemo which consists of Gemzar every other week with a week of rest in between. The drs feel that this is the best thing for his kidney which has been showing signs of distress. I asked Dr. West if this would be his recommendation and he said that it would be standard for his situation.

His red count is very low and the doctor ordered a transfusion yesterday. He had 1 unit yesterday and 1 unit today which brings me to the reason I am posting.

The hospital still had his dx as non-hodgkins lymphoma and I told the nurse that that was last year. This year it is lung cancer. He then told her that it is not really lung cancer but the dr is treating him for his lymph node and a growth in his chest.

After the nurse left, I asked him what he meant and he said that since his bronchoscopy dx was negative for malignancy he did not have lung cancer. I should point out that his hearing (which was bad to begin with) was further damaged with the chemo he had last year and even with his hearing aid he has difficulty understanding what people say.

Anyway I was very troubled by his remarks. I told him again what his oncologist has told him about his dx. He said that since the biopsy was of his lymph node that it isn't lung cancer. I explained to him that that is how they determined his mass in his lung is cancer along with the suv reading. I also explained that we would not know how active the mass is now until he can have another pet scan. This is NOT the first time he has been told this.

I am troubled by this and I can't explain why. He has not argued about any treatments and when the onc gave him a choice of chemo or "wait and watch" he chose chemo.

Any advise on how to handle this would be greatly appreciated - do I just continue to repeat or just ignore. Is ignorance bliss?

Thank you all for your replies to my previous post.

Sue

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Ignorance is not bliss for the caregiver. Unfortunately (or fortunately!) along with loving and caring for our loved one who is fighting the cancer, we take on the responsibility of being their medical advocate too.

What I understood from reading your post was that between the nurse, written medical record, and your husband, that you have a confusion in diagnosis and what the oncologist actually said? If this is the case, then I would put a call into the oncologist and talk with him directly on what is going on.

The patient, your husband, is comfortable going "with the flow" and following whatever doctor's orders are. He has hearing issues and dealing with multiple side effects from his chemotherapy- which is very hard on his body...it's up to you to find out what is going on, what his diagnosis is and what the next steps are.

If you aren't able to go to doctor appointments with him, I'd encourage you to get him to take along a hand-held tape recorder and any written questions you may have so that everything is on tape and won't be missed.

My dad had a terrible time concentrating when his counts were low, he was focused on just getting thru the treatments and tended to tune out whenever the doctor spoke. We always made sure someone was with him to get questions answered and to know where he stood in terms of scans and progression.

I'm not sure I answered any questions you may have had, but sometimes it just feels good to post and vent and get some encouragement from others.

I'm keeping you both in my prayers. PLEASE keep us posted.

Hugs,

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Katie

Thank you for your kind words and advise.

There is really no confusion over his diagnosis- he was hospitalized many times last year when he had NHLymphoma and the hospital is going by those records. He was only there for a blood transfusion.

I go with him to all his appointments and since he can't understand people on the telephone - I handle almost all his communication.

His dx is definitely NSCLC - lllb - squamous cell. I think that I will have him talk to his onc next time we see him so he will know that he is confused about his diagnosis. This may also be his way of dealing with it. He has so many health issues and has never wanted to dwell on the fact that he has problems - although he has been good about following drs orders.

Thank you again - and have a great week-end.

Sue

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This may also be his way of dealing with it.

I think that's it. There may be something about the words "lung cancer" that your husband has trouble handling, and it's probably not necessary to force the issue. He knows he's sick, and if "non-hodgkins lymphoma" sounds a bit less threatening, so be it. The main thing is that you're on top of the situation and he's getting the proper treatment. Aloha,

Ned

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Ned

Thank you for your kind words of wisdom.

I am just playing it "by ear" and will discuss this with his onc next week. I guess I just feel too responsible for him at times.

He had chemo on Thursday (Gemzar) and today is his first day of not feeling so sick. He gets fevers and aches all over for about 4 days after his treatments. He was originally going to have gemzar once a week for 3 weeks and then one week off and repeat. His onc decided that would be too much for him and has him on 1 week on and 1 week off. I think this is much better since his recovery is 4 days.

We will walk to the beach after lunch and pretend we are in Hawaii. Our house needs to be tented for termites too. Would love to be in Hawaii for that!

Again thank you - I love this site.

Sue

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Hi Sue,

Sounds like you are on top of the situation and handling it as well as you can. I like that they backed off on the frequency of the chemo, as that takes a terrible toll on the body. If hubby feels more comfortable with NHLymphoma, that is fine! When my Mom was diagnosed with primary lung cancer, she felt they were wrong, because the type of cancer was the same name they gave to her primary breast cancer two years before.

I didn't press the issue with her. It just didn't matter, and if she felt better with thing the breast cancer metastasized, so be it. I just wanted her to be comfortable in her skin, and like you, I went to her appointments with her, and took good notes, and made sure what they did was in her best interests and comfort.

Glad you found us, and it does help to write doesn't it? Keep up the good work.

Judy in MI

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This may also be his way of dealing with it. He has so many health issues and has never wanted to dwell on the fact that he has problems - although he has been good about following drs orders.

I agree with your assumptions and with Ned, I think this is exactly his way of dealing with it. My dx is IIIb lung cancer. I would be much happier if I could translate it into the doctors treating me for a lymph node and growth in my chest instead of advanced lung cancer. The important thing is he is compliant with treatment. I am as well and am doing very well.

Keep us posted.

Judy in KW

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  • 1 month later...

Hello you wonderful people.

I read the posts daily and thought I would update what is happening here.

Kurt had his 5th treatment (almost half way point) yesterday and is feeling pretty sick today. He is able to eat but the nausea is pretty bad. We try to stay on top of it so I guess it could be worse without the medication.

His blood work the past 2 weeks has shown that his kidney function is deteriorating at a faster rate than it has been. He has been on a down-hill slide for over a year now. They say his warranty on the transplanted kidney is up.

There is not much data on transplants lasting over 20 years.

He will have one more chemo and then a pet scan - we can then decide how to continue.

His fatigue is worsening - drs say it is from combination of all his problems: cancer, chemo, diabetes, & kidney failure and that it will probably not get better any time soon, if at all.

We had a long talk yesterday afternoon. I told him that he has been in a holding pattern - waiting for the chemo to make him better. I want him to start making short weekly goals of somethings to look forward to each week. They can be as small as walk to the end of the street ( Monterey Bay right there), or a drive somewhere. Anything to give him things to look forward to. (hate ending a sentence in a preposition). He is still somewhat in denial, but I think he needs some quality of life instead of this waiting for the things to "get back to normal".

These past 2 years have been so hard on him and he has changed so much from the vital man that he was. We ran a sail making business together ( later changed to awnings for motor sports) and we had to abruptly give it over to our kids to run. I am thankful that they are able to take it over, but the abruptness of retirement has been hard on both of us.

I am so glad that this site is here - it helps me so much.

I will let you know the results of his scan.

Sue

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(hate ending a sentence in a preposition).

Have to find a little humor in this journey. Your are in good company with this sentiment. I've noticed a great many of us here have a seeminly parochial education lol.

I admire the way you are handling this. It takes great courage. Stay with that goal making, helping your husband enjoy any little moments he can. Pleasant distraction is an ideal tool.

Keep up posted.

Judy in KW

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Hi Sue,

I think you are handling this perfectly. It's the small stuff in life that make life so awesome. Monteray Bay is so beautiful. How lovely that your children were able to take over your business.

I've been cancer free for 3 years, and have finally accepted that "after cancer" there is no getting back to normal. My life is totally different now, and I have finally accepted my new normal, whether I like it or not. It is what it is, and I have to find my joy now rather than keep waiting for things to go back to how they were before.

Judy in MI

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