Cancer is Back - Questions

starseed · Regular Joined: 06 Sep 2006 Posts: 18

My mom's cancer is back.

She had stage 3 diagnosed June 2006

She had a successful Whipple Surgery in September 2006

She received Chemo and Radiation from November 2006 to March 2007 (I moved in to care give during that time).

Her Tumor Markers came back positive, along with evidence of it in her liver enzymes 2 weeks ago. Her CT scan came back without any tumors.

We just spoke to her oncologist.

He said it has returned without doubt and likely spread to her liver. He did not recommend chemo due to her age and frailty, but would not deny it either. He basically said this was her death sentence and talked about hospice.

My mom does not really understand what Chemo is for in this stage - to extend 4 month into 8 months and/or manage pain (which she has a little of). She also clearly said she did not want this to linger on and on and asked the Doctor if he would kill her if she was suffering.

The doctor did not start any chemo and told her to come back in 6 weeks to get another CT scan and see where the tumors show up.

Questions:

1) If she chooses chemo, will this help her in the long run or potentially extend her pain and suffering?

2) If the Doctor thought she should do chemo, he would have started her off right away, right, instead of waiting 6 weeks. (he cut her chemo short one month because she could not handle it before and I know she can not handle it now).

3) How many tumors could show up in 6 weeks? I feel like they might show up all over her body.

4) Where will the tumor most likely grow. We know the liver due to the blood tests, but could it be liver, stomach, intestines, spine all at the same time?

5) How long? How long does she really have? Doctor says tumors will pop up and once they do it will be the end. How long does a tumor take to grow once the tumor markers and liver tests have clearly indicated it is in the blood.

Thanks

starseed · Regular Joined: 06 Sep 2006 Posts: 18

PS - Please be frank and direct. We've been through allot and can take it.

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 749 Location: UK

Hi, Starseed, I am sorry about your news - it is so hard for you and your family.

One thing - you mention the doctor's reluctance to use chemo in view of your mother's age but do not say how old she is.

As you know, chemo has its own downside and if your mother is frail and reacts badly to it, then it is not improving quality of life even if it extends it. Palliative care may give a better quality of life for the time left to her.

Tumour development will depend on the type of cancer involved. You need to ask the doctors for full information.

I am sure you have done a great deal of research, but am posting this link anyhow as it contains so much information. http://www.pancreatica.org/faq.html#anchor2852712

starseed · Regular Joined: 06 Sep 2006 Posts: 18

Thanks,

She is 80, but was weakened by a car accident 2 years before the cancer (scarred her Pancreas, which evidence shows can trigger Pancreatic Cancer), then the first course of Radiation and Chemo weakened her even more.

After her whipple, she was diagnosed with Stage III B Pancreatic Cancer. At that time, there were no clear margins when the tumor was removed and it had spread to 7 of 20 lymph nodes.

Now the Doctor is sure it has metastasized to the liver at least.

I was her care giver during the first set of Chemo. I don't think she can live at home alone during chemo now. I have full blown Care Givers Stress (Post Traumatic Stress Syndrome) from taking care of her so I cannot do that again.

I was cleaning up diarrhea every other day, changing her bed, and during chemo, she would often be in the kitchen and get dizzy and needed help getting to bed. She was also very cruel and mean towards me (I dealt with it alone) while care giving which brought all the childhood abuse back too, hence the PTSD or CGS. Even with a nurse visiting everyday, she would most likely faint and a new emergency would ensue.

We as a family are hoping it will go fast (please). Her wanting chemo is more fear based and she has mild dementia too (and she never believed in God and was a very very mean woman all her life) so she is afraid to die and meet her maker.

So it is a waiting game of when they grow, how fast, how long, with no real answers of even a prognosis.

I'm waiting for the Oncologist to call me back.

Any more feedback? Anything I should ask the Doctor?

Thanks again!

starseed · Regular Joined: 06 Sep 2006 Posts: 18

PS - I obviously do not hate her for being abusive, otherwise I would never have lived with her or even take the time to ask these questions.

I'm sure people with abusive parents can relate to the mixed emotions that come up.

It's been good for me though, to understand my childhood as an adult; it's been healing for me.

But our family has been devastated by this and we would like to move beyond with as little drama and trauma as possible.

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 749 Location: UK

Hi - I hope others will share their own experiences with you. I can only say that it is not easy knowing what is the best thing to do.

You (and your family) need to be clear with the doctors about the problems you face. You will also need to persuade them to be more precise about the prognosis, their estimation of the disease's progress and what they advise about handling it.

Fear of dying is quite usual. You might find Elisabeth Kubler-Ross's book "On Death and Dying" of help.

I hope your call with the oncologist brings some answers.

starseed · Regular Joined: 06 Sep 2006 Posts: 18

Oncologist didn't really help, just confirmed another 6 week wait and see policy.

He said he was going to wait the six weeks, do another CT scan, and see where the tumors show up is at all. He said he will compare each 6 week scan to see growth rates. He also said where it shows up will determine treatment.

He made it clear that chemo was palliative, not curative. Just to help with the comfort. He said, if she takes it and her ability to function declines, he'll take her off of it. The only point of the chemo is to improve daily life, not cure and not make it worse.

I still would like an idea of how long it takes the tumors to grow and start showing, at least the statistics or a round number.

I don't know if we're talking 2 month to live or 10 months.

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 749 Location: UK

I'm sorry you were not able to get more from the call. However, if he wants a six-week gap between scans, he may be thinking that the cancer is an aggressive one, which will show up on the two sets of scans.

I am not sure if there is any easy way to say how quickly a tumour may grow. Some are incredibly aggressive, others are very slow.The link I gave you may give some indications.

kelwards1 · New User Joined: 16 Feb 2008 Posts: 3

My mom was diagnosed in Sept. 07 with pancreatic cancer with mets to the liver. She had two nickol size tumors in her liver in Sept. She died March 7th, 2008 and the tumors had consumed her whole liver. When she laid on her right side you could feel the outline of her liver and it was very big. She did not have chemo, only pain meds. Call hospice, they are wonderful! Mom was able to get around until the last 5 days.

I'm so sorry for what you are going through.

Queensland Girl · Posted: Tue May 13, 2008 6:51 pm Post subject: Re: Cancer is Back - Questions

Hello,

My Dad took six months from diagnosis to death to go from being a strong, healthy outdoors person to a frail and confused shadow. He died in January this year. The doctors gave him chemo, but didn't offer him surgery. He seemed to handle to chemo fairly well, but I think it only delayed the inevitable. Dad never allowed me to go with him to the oncologist, so I never got a chance to ask all of the questions I wanted to.

At then end all my Dad wanted was to have some dignity.

So I suggest that you talk to hospice people so your Mum can have a quiet, pain free time and you can have peace of mind and less stress.

I am sorry for your family's predicament,

Queensland Girl

starseed · Regular Joined: 06 Sep 2006 Posts: 18

Thanks for the honesty everyone!

"However, if he wants a six-week gap between scans, he may be thinking that the cancer is an aggressive one, which will show up on the two sets of scans."

That's what I think and what he said. He also has know idea where it might show up, although the liver is expected.

He is aware my mom does not know that future chemotherapy is palliative and not curative. I think he things it's aggressive and will let the scans tell the story for her.

Basically, I have a rough prognosis of 1 to 10 months; but I still have to wait (4 more weeks) for the next official word from the Dr.

If the cancers is very aggressive, how does that affect prognosis?

brainman · Posted: Thu May 22, 2008 7:13 pm Post subject: Re: Cancer is Back - Questions

Hi starseed,

Although this is the first time I have posted a reply to you, I have been following your mother's story. I am very sorry about her cancer. Pancreatic Cancer is one of the most aggressive cancers in existence. It is also one of the cancers for wish our treatment options are not that great. Although your mother's prognosis is not good, here is my take on prognosis.

I like to know my prognosis but only in order to set realistic priorities for the things I still would like to do with whatever time I still have left. I know that it is easier said than done, but after setting my priorities, I just try to set aside my prognosis and live one day at a time working toward those goals. Your mother may only have a few months to live. How does she wish to spend those months? Who would she like to see again? Where would she like to go? What would she like to do? It is your task to help her live the life that she still has to its fullest.

You and your mother are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

starseed · Regular Joined: 06 Sep 2006 Posts: 18

Thanks Brainman,

Unfortunately, my mom is not all there and has some mild dementia and major denial (which has never moved into anger or acceptance). I have not spoken with her about her prognosis or even tried to explain why the doctor didn't start chemo right away (which she asks almost daily).

She thinks she can just eat marijuana brownies (we're in California), go get chemo once a week, and then will be cured again. I'm not telling her how serious this might be and I'm letting the doctors tell her what she needs to know and when.

I'm wanting to know the prognosis so I can figure out how much time I have left with her and what is the best way she and I can spend those last months.

The doctor make it look really bad and has straight up said this is it. This is the first time the doctor ever spoke this way, before we was going for a cure.

brainman · Posted: Sat May 24, 2008 10:29 pm Post subject: Re: Cancer is Back - Questions

I understand now. Knowing your mother's prognosis will help YOU to set some priorities and make plans. Few elderly people in an already weakened condition live long with advanced Pancreatic Cancer. I think you are looking at months rather than years. I am so sorry for you and your mother. Keep posting updates and we will try to help in any way that we can.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

JLC · Regular Joined: 18 May 2008 Posts: 23

Starseed,

I have been lurking for a bit and debating on how to introduce myself, but I have to respond to you. My mom has stage IV pancreatic cancer that has metastasized to her liver and abdominal lymph nodes. They have stopped all treatment.

My mom went through a period where she was very mean and cruel, first to me and then to my oldest sister. It was very difficult and it did trigger past issues. This journey has been tough on all of us. I just wanted to offer my support, and my undertsanding.

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