Dad just diagnosed....how will he die?

jb · Regular Joined: 05 Feb 2006 Posts: 18 Location: UK

Well the doctors have recommended my dad has radiotherapy as the tumour is small.
My dad wanted to think about his treatment before making a decision but the doctor said he should have the radiotherapy as it will definitely help him and should only take about 4 to 6 weeks so he is now going to accept treatment.
They may then suggest chemo the doc said.
The doc said the reason they cannot operate is because the tumour is too near a vein/artery.
I asked my mum if they were told what type of cancer it is and at what stage it is but she said they weren't told.
The doc is sending them a copy of his report which will hopefully give them more information.
Jackie

steph · Regular Joined: 06 Feb 2006 Posts: 12

Hi Jackie,
I have been wondering how it was going for your father and your family. The news sounds good. The small tumor and potential for chemo is wonderful. You really do not want this disease to metastasize (spread to other organs). This treatment will slow down or maybe even stop the disease progression if all goes well. Like someone else wrote previously, each person reacts differently and their disease is unique to them. My Mom had 8 rounds of radiation. It made her very tired and weak and she lost her taste of food. Everything tasted metalic. Hospice suggested she eat with plastic rather than metal silverware , and that helped her a lot. She was also at the end of her life when she had the radiation so maybe her weakness and fatigue was greater than normal. Try to find out the cell type of the cancer, that will help you research to have a better idea of what lies ahead. Your Father must feel hopeful if he is going ahead with the radiation, I am happy to hear that. Your Father is lucky to have you to be supportive and just present, even if it is by a phone call. Prayers are with you. Steph

steph · Regular Joined: 06 Feb 2006 Posts: 12

Hi Jackie,
I have been wondering how it was going for your father and your family. The news sounds good. The small tumor and potential for chemo is wonderful. You really do not want this disease to metastasize (spread to other organs). This treatment will slow down or maybe even stop the disease progression if all goes well. Like someone else wrote previously, each person reacts differently and their disease is unique to them. My Mom had 8 rounds of radiation. It made her very tired and weak and she lost her taste of food. Everything tasted metalic. Hospice suggested she eat with plastic rather than metal silverware , and that helped her a lot. She was also at the end of her life when she had the radiation so maybe her weakness and fatigue was greater than normal. Try to find out the cell type of the cancer, that will help you research to have a better idea of what lies ahead. Your Father must feel hopeful if he is going ahead with the radiation, I am happy to hear that. Your Father is lucky to have you to be supportive and just present, even if it is by a phone call. Prayers are with you. Steph

jb · Regular Joined: 05 Feb 2006 Posts: 18 Location: UK

HI!
Well my mum got a copy of my dads biopsy and he does have NSCLC (T4NOMO).
They have said he is stage IIIB which i know is not good.
The report says he has NSCLC in his left lung which is also invading his mediastinum.
He has started 4 weeks of radiotherapy and is doing ok at the moment.
He is still losing weight though but is eating well.
I'm hoping he will not need chemo but if it will give him more time with us i hope he will have it.
Jackie

steph · Regular Joined: 06 Feb 2006 Posts: 12

I hope your Dad is not in any pain. How are his spirits? This disease can change so quickly. The radiation should help. Has he started it yet? Do you live near him? Grandchildren can be so soothing. They help take your mind off your cancer with their innocense. I would suggest to visit him often. Even if he doesn't feel like speaking, just your presence is reassuring. My thoughts are with you at this time. A year ago I was feeling what you are feeling now, terribly frightened of the unknown and the known,hopeful,hopeless,wanting to hope for the best but knowing the odds were against that hope. Also, love and gratitude for having my Mom in my life. The cancer might only give you months left with your Father. Take each moment a so important and be there for your Father,even if it is just watching him sleep or giving hes foot a massage. Those little things are what I cling to now. Goos luck. God be with you.

Steph

jb · Regular Joined: 05 Feb 2006 Posts: 18 Location: UK

Thanks Steph Very Happy

Yes my dad has started his radiotherapy.
He has 2 more weeks left then a month break where the doctors will decide about chemo.
He looks tired and his face is very gaunt.
I still feel very tearful all the time and have a sickly feeling in my stomach but I'm hoping this will ease once he has finished his treatments.
Take care
Jackie

bkerber1

Thank you all for sharing the end of life stories with us. My parents have both been diagnosed with lung cancer. Dad in Jan and Mom this month. I am trying to learn as much as possible about what to expect and this forum has really helped. I pray for all of your relatives

2000shl · Last edited by 2000shl on Tue Mar 14, 2006 6:37 pm; edited 2 times in total

Let me start my long story in a hope that it could be useful to someone like you.

My father was first diagnosed with squamous NSCLC in April 2002 at the age of 68. He was still stage 1 at that time and operation was a feasible option. However, we went to an oncologist, not a surgeon, who believed that he could cure it with chemo plus radiation. Operation meant taking half of his lung away, and the oncologist deemed it a pity since the tumor was so tiny. We should have known better. The oncologist tried gemzar and navalbin first. No effect. The tumor grew. Then he tried taxol and carboplatin plus radiation. Tumor shrank and seemed to disappear. After several months, however, the tumor came back with full force on CT. We left Korea for New York in February 2003, to take him to Sloan Kettering Memorial for surgery. The doctors there told us that he was not operable any more. We took him back to Korea, preparing for his end.

Then a miracle happened. A surgeon in Korea told us that he could still perform an operation on him. We decided to trust him since we really had no other options. It was a long operation and the surgeon told us that he did not find, at least on naked eyes, any metastasis in my father's lymph nodes during the surgery. We were ecstatic. My father slowly recovered, and although his lung capacity was reduced to one third of what it used to be, he felt as if he received a precious extension on his life. That was spring of 2003.

For the next two years, my father witnessed his only son's marriage, birth of his grand child, and his seventieth birthday party. Those were the happy days. Then the carcinoma reappeared on his PET in May 2005. Doctors told us to come back in 3 months for another PET. We asked if there was anything we could do in the mean time for we were anxious if the cancer would grow while waiting. Doctors told us that even if it was the dreaded relapse, the 3 months' wait would not make much difference as surgery option was no longer available and there were few things they could do. We were thinking of sending him on cruise trip with mom but did not, fearing something might happen during his trip.

For the entire summer, my father felt pain in his chest and we found out why when he did another PET in August 2005. The carcinoma grew along his rib this time, rapidly spreading toward his spine. Doctors told us to try radiation if at all possible. We did it for the entire September to no effect. His chest pain grew. In October the cancer touched spine. Doctors explained that it could paralyze him any time, since the cancer was putting pressure on his nerve inside the spine. Doctors told us that the cancer loves to feed on the nerve, and that it could either grow toward his brain or downward along his spine. This prognosis discouraged my father terribly -- he rather wanted to die than spend the rest of his life kept in bed unable to take care of basic needs. He was the kind of orderly, independent person who combed his hair bedridden and kept a log of every drop of medicine he took.

As a last resort, doctors recommended so called "target-drugs." That was November 2005. We first tried cetuximab with taxol. Soon my father developed terrible rashes, a side effect of cetuximab. He had hard time swallowing anything. For pain management, he was on morphin. If we had a slight sign of cold, we did not go near him since the doctor warned him that his immune system was weak and pneumonia would certainly end his life instantly.

Cetuximab proved futile, and my father's spine 3 and 4 turned black on CT in December. Then the spine collapsed with terrible pain, and he had to wear a supportive jacket all the time. Most of the time, he was on bed. Most of the time, he ate congee and new care. He felt burning sensation on his throat. Strangely, my father still had hopes.

Late January this year, doctors told us to try Avastin with Tarceva -- two highly acclaimed - and expensive - drugs. Avastin was dangerous for my father, for one of its lethal side effects, especially common among squamous cell carcinoma type patients, was hemorrage. We followed the doctors' recommendation. It was a big mistake for him, since Avastin proved too strong for his weak body. By then, he was a mere 45 kg (175 cm). After two Avastin treatments, my father complained of breathing problem. Pain could be relieved to some degree with morphin but breathing trouble could not. Doctors explained that his breathing situation was as if he was drowning. We could well imagine how painful that must be.

Doctors, however, insisted on one more Avastin therapy, after finding that there was a sign of positive response on CT. We hesitated, but allowed it. This was the last straw. It inflicted terrible breathing pain on him. Blood came out of his stool. He could not eat nor drink anything. He could no longer talk or raise his body or legs. His mind, however, was sharp as a razor. He communicated to us by writing on sheets of paper. He told us that he was dying being used as a mouse in a lab. He told us to kill him as soon as possible if we had a modicum of mercy for him. He told us that his body felt as if it was falling like a jet with its engines turned off. Imagining how difficult it must be breathing each moment, we could do nothing but cry. With Avastin, the end came rather quickly. On February 28, one week from receiving his third Avastin treatment, he died. His final word, scribbled amidst horrendous pain, was "I die happily."

Looking back, I think as follows:

1. When you have lung cancer, no matter how small the tumor is, do not feel bad about cutting half of your lung away as soon as possible, for it is your best chance for cure. People can live well with half their usual lung capacity, as my father did for two years. Radiology and chemo are all guessworks that rarely provide fundamental solutions. Never trust an oncologist who puts chemo ahead of surgery. Many technical problems (eg too near artery etc) concerning surgery could be overcome by resourceful surgeons. Don't be discouraged if one surgeon says no. Diligently look for the best doctor who could perform an operation. My father had the most difficult operation as well and yet it was successful (relapse is another matter). Chemo and Rad simply did not work for my father at all. I also heard that, after rad, surgery becomes much more difficult to perform since burned cells are harder to stick together.

2. For people over 70 years old whose stage does not involve surgery option, I would strongly recommend using hospital primarily for pain relief (eg morphin) and emergency purpose (eg antibiotics for pneumonia) rather than cancer cure. At current level of medicine, going for radiotherapy and chemo more often than not kicks in the viscious cycle of [at-best two months extension and at-worst lab mouse plus terrible quality of life]. Cancerous cells are so resilient and hard that even a surgeon's knife has hard time cutting them, I have heard -- it obviously is difficult to reduce them through chemo.

People with cancer die of either cancer or drug. Those who cannot afford die of cancer; those who can afford die of drug. The latter die no less painfully, as I have witnessed. However, I know that oncologists will push for drugs since that is their raison d'etre, and I also know that patients' family will opt for drugs since fighting with something, even with a placebo, is better than waiting for inevitable end in hopelessness. No matter what you decide to do - especially if you decided to go for chemo and rad - put premium emphasis on maintaining physical stamina. Chemo and rad will not just quickly rid of appetite but actually burn the mouth and throat -- body weight will visibly decrease almost on daily basis. Immune system will be weakened.

3. I regret most not having sent my father to a cruise last summer with my mother. He had the most miserable last summer of his life, torn between growing chest pain and uncertain prognosis. If there had been no cure anyway, it might have been better not knowing that he had a relapse. He might as well enjoy his life, however the end may come. Ignorance could truly be a bless.

Diane12

2000shl - thank you so much for sharing your father's story and your family's journey. I'm sorry that the first oncologist did not push your father towards surgery. It's very hard trying to learn all you can about cancer and different treatments, scrambling around to get appts, etc. and then hoping that you are making the best decision you can for your loved one. I think what I have learned from dealing with this recently with my mom is that there is really never "ONE" right way to treat cancer, and each doctor will give you a different opinion.

My mom was staged at Stage 2 squamous non-small cell in her lower right lobe with existing COPD (no function in her left lung) and her normal lung doctor said "there is no way your mom can have surgery", then we went to an oncologist, who said "I think your mom can have surgery" and who referred us to a lung surgeon, who was so convinced mom could have lung resection surgery. I mean, what is one to do with different opinions...how do you know?

Mom decided to have the resection, which ended up being a lobectomy because the tumor was much larger than diagnosed, on March 8th and she "seems" to be doing well, but we still don't know what her pulmonary function will be....and even with what appears to be a successful surgery for my mom...there are so many cases where the cancer comes back even after surgery and a clean bill of health.

So what I am saying is that you should have no regrets with how you and your family handled your dad's treatment...you did the best that you could do..and even if you had done things differently, there is absolutely no assurance that things would have turned out differently. I do agree with you that families should definitely explore all options for surgery even if one or two specialists say "no"...that is the best chance for a cure!

It is obvious how much you loved your dad - and I'm sure he sensed that every day and was blessed and inspired by it.

Peace to you and your family...

sherri

Thankyou all so much for sharing your stories. You and your families are all very brave, strong, wonderful people.

My dad is 68, just diagnosed in January NSCLC 3b. Has gone rapidly downhill. Started in hospitol after diagnosis, excess fluid needed draining....came home, started radiation, then after first round of chemo ended up in hospitol for a bit over a week. Almost died with infection, pneumonia, rapid heart beat etc....All seems to be under controll now and we take dad home today for our next step. Hes happy to be coming home.

In a week or two he has opted to try chemo again on a lower dose. We are all trying to be hopefull, in two months time dad has lost alot of weight, and has aged about 20 years.

Right now, we're trying to concentrate on spending as much time with him aswe can, and we want him to not suffer.
This is such an awfull disease.

My best wishes to each and every one of you.

Sherri

Diane12

Sherri, I'm sorry to hear about your dad and how quickly this disease is trying to take over!! My mom was diagnosed on Jan. 31 with Stage 2 NSCLC and while waiting for surgery on Mar 8 also went through many of the same things your dad went through, especially the rapid heart beat (A-Fib), which put her in the hospital for 5 days, and almost kept her from having surgery. Her sugar also shot up and she had to take insulin, and her white blood count went so high but they ruled out pneumonia and really never found the source of the infection! Since christmas, she has lost at least 20 pounds...and much of her strength.

You are so right - lung cancer is the most awful disease! And it is so hard to see a loved one going through this...cry: I'm glad that your family is spending as much time with your dad as you can - your love and support is what he needs the most to see him through the different stages of this disease. I hope he starts to feel better soon!!

sherri

Thankyou so much Diane for your kind reply. Every little bit of support or kindness can sure go along way to giving us strength.
Please know my thoughts are with you and your mom, and the rest of your family. From reading your posts and replies to others, I can see what a special person you are and your mom is lucky to have you.

Take good care,
Sherri

Diane12

Hi Sherri, thank you for the kind thoughts regarding my mom. I can also feel the kindness in your posts, and have to say that your dad and family are blessed by having you! It's amazing that in this big world we can come together in this forum, and feel like we are in the same room:-)

All the best to you - keep hope alive....

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