Chat with Bob's wife..(long)

[NellW]

Bob's wife Jo just called me and said she needed to talk. She goes to a small prayer service on Sat. mornings at her church, and one of the ladies who attends walked to her car with her afterwards ad asked how Bob was doing. When she told her about the new mets showng up on his PET, the woman told her when it goes to the bone it is pretty much a hopeless situation! Poor Jo, she was really stressed. This person had in the last couple of years lost her husband to cancer that metastisized to the bone, so Jo understood why she was saying this, and said she is not a mean spirited person at all. What she asked me is, according to the research I have done and the communication I have here, did I think the lady was telling her the truth. I said NO it is never a "hopeless case". But then we did talk about that I think Bob's GP is in denial since he is a close friend, and I think he is not moving fast enough. Bob has had the symptoms as you all know of these mets for at least 2 to 3 months, and the doc kept looking at all sorts of other things, like maybe it was an infection or edema, ect ect. Well now finally he is admitting it is mets, but still Bob is seeing a urologist and a radiologist and an oncologist in the next "couple of weeks." He did see one oncologist who is going out of town for 8 weeks so now he is referred to another one and wont see him till after he sees the urologist in Detroit and the radiologist next week. I told her I really felt we were losing valuable time and that while i surely thought Bob could get into remission possibly, that time is of the essence. The bone met on his spine could cause lots of trouble and the aortic lymph seems like it could too. Also he has prostate as another primary, a small spot on his right lung, and a pubic bone met. All pretty small for now, but all showing up since his Feb. PET. New hot spots, I mean that showed up in August and werent there in Feb. So all in all I was able to say some stuff that I felt needed to be said, and she was very open and in agreement about their GP being in denial because of his personal relationship with them. She said "well what can we do now" and I said well first of all we can lean on the new docs heavily to get going on treatment and of course we will pray. She thanked me for being in the fight with them and my hubby too, and said we are all they have for support. I said, nope, you have the prayers and thoughts of lcsc too.

I am going to read her some posts that will encourage her. Told her of lots of stage IV people who are still having quality of life. Bob is going to be restaged also.

Thanks for listening to this, any advice would of course be welcome.

Love and Prayers for you all!!

[Don Wood]

Nell, you are a good friend to these people. They are fortunate to have your support and caring. Now -- of course, this woman your friend talked with believes that all will be like her husband's case. Not true. Each one is different. When Lucie was diagnosed with LC two years ago (YES, two years!), she was Stage IV, with five bone mets, three of them very large. She went through chemo and radiation and was clear for almost a year. She is now undergoing a second round of chemo and it seems to be working, with other treatments ready for backup. So, there is always hope. This lady meant well but she is taling without a lot of knowledge. Tell your friends what I said. Lucie is a walking testimony to it. Don

[-Cheryl-]

Bob,

Nobody but the good Lord knows when it is our time. Don't be discouraged. God will see you through this time. God Bless you and I send my prayers.

Cheryl

[Snowflake]

Nell,

First, the prostate primary - according to my father's surgeon, MOST men die WITH prostate cancer, not OF it. Of course, it should be monitored closely (my grandfather did die of prostate mets to the brain and bone - TEN YEARS after surgery & chemo) to see how fast it is or isn't growing... This is something a urologist would know about more than a GP, it's a specialty not generalized treatment.

Bone mets - hmmm... I think all cancers are different and all people react differently. There are people on the board who have been dealing with bone mets for years (in retrospect, no one suspected bone mets from a "removed" cancer when my grandfather had hip replacement - I feel that if they had actually looked, the hip issue would have proven to be bone met and could have been treated). It's not a lost cause, it's not a time to lose hope. It may, however, be a time to change doctors.

Can Mrs. Bob talk Bob into a second (or third) opinion? Time IS of the essence, you are correct in that thinking. Sooner is definitely better...

Take care, Nell. Keep prayin'!

Becky

[kimblanchard]

If it were me, I would want more aggressive treatment. You never know, he might be one of the ones who responds well to certain medications.

I think there are a lot of people here with bone mets so it would seem it is not the beginning of the end. Others are dealing with them, Bob can too. I sure hope for some good news for him soon.

Best wishes, Margaret

[Lisa O]

I agree with the others. My grandfather died with prostate cancer many years after successful treatment of bone mets. (His death was related to a longstanding heart condition at the age of 80). If I were Bob I would indeed check out some more aggressive options for treatment. Everyone is different. No one is a lost cause.

[betplace]

(((Nell)))

I have nothing to offer but hugs and prayers for all four of you. I had a small spot on one rib when I started, the chemo took care of it.

Blessings

Betty

[gerbil runner]

Nell, you are obviously a great friend!

I guess the word "cure" is seldom used with patients with bone mets. But it's certainly possible to get it under control and have great quality of life for years afterwards. It does sound like a change in doctors may help.

[paddy]

Your friends are so lucky to have you in their camp Nel. I agree, I would want more aggressive treatment. You really have to kick and scream before these Doctors will take you seriously! Good Luck. Paddy

[SJAS]

Nell,

Thank goodness for friends like you. Yes, it's amazing the stories people tell you. Almost like when you're pregnant and everyone HAS to tell you their delivery horror stories. I finally started to avoid the problem by telling people that Steve had cancer and we were well aware of the horror stories but really needed to hear the good stories.

I see you're in Detroit area. Can't remember where Bob was getting tx, but my sister-in-law just finished chemo/radiation for breast cancer at U of M. They are a national center and the tx was first rate and very aggressive. Can you persuade him to go there for a second opinion at least?

[MJ]

hi nell,

bob and his family are certainly lucky to have you advocating for them. i don't have any direct advice to give, but i wanted to send my prayers.

God bless,

mj

[TAnn]

Nell,

I agree with you and hope that Bob's wife gets him to an oncologist right away. Treatment postponed is never a good idea. It just gives this beast time to advance. Hopefully she will find a good oncologist that is agressive with treatments.

Keep us posted on Bob's progress.

TAnn

[Elaine]

Nell

Thanks for being such a good friend to Mr and Mrs Bob. And to all of us!

love and fortitude

elaine