Onc. Writing Off My Mom or am I in Denial?

[Linda in Calif]

Hi Everyone: I don't know what to think. My Mom was diagnosed with mets to her lung this last July, 13 years after her original diagnosis of breast cancer. Her Onc. put her on FEMARA 3 months ago and we got the results of her tumor markers today and they have continued to rise (15 points in the last three months to 95). Her Onc. wants to continue her on the FEMARA for another 3 months to see if it will work given more time. She and I are getting the feeling that her Onc. is writing her off by not being aggressive in her treatment because of her age which is 78. When she questioned him about how much time he felt she had left so she could make some decisions he said that at her age she should already have that in place. Now I realize that everyone has to die sometime but the people in my family tend to be long-lived into their late 80's and early 90's. My Mom has always taken great care of herself nutritionally and with excersize. If you met her you would think she was 60. When I was going through chemo she not only took care of me but took care of my Daycare Children too so I wouldn't lose my business. Her Onc. says her cancer is all spread out in her lung so there is no one tumor they can perform surgery on. Can any of you suggest an alternative treatment rather than just the FEMARA? She is willing to go through regular chemo but I hate to have her do that if it won't prolong her life significantly. I have told her about the numerous success stories here at the HER2 site of people beating the odds and living much longer than anyone ever thought possible. Presently, she feels GREAT with only a little pain when she takes a deep breath. I don't know if we should just accept things and have a good quality of life for whatever time is left or if she should go through all of the pain and struggle in hopes of gaining a few more years.
Sorry this is so long but any input would be welcome. Thanks, Linda in Caif.

[*_Annemarie_*]

Two things I would recommend. First get a second and third opinion. i urge all of her2 memebers to do this. Unless you are like Christine and know all the data and trials then you need to do this. I know of two situations (one being my own) that i did not have the most up to date care. I was never offered Herceptin. I found out about it on this web site. My other friend who is a retired Dr. had prostate and went to a collegue (friend oncologist) and was never offered intermitten hormones which is the latest in prostate care. We both feel we should have been more of our own researcher and advocate not just trust what the Dr. says and my friend was an internist for 40 years!

Second, with or without cancer I think everyone should have a will. It may sound insensative coming from an oncologist. I think nobody ever knows what lies ahead. Who know we would have a tsumuni? What were the chances of that happening? It places an unfair burden on family members and many people have family arguements over wills. So for everyone's interest I think it is best. Just my two cents. As to your mothers chances of survival? i will tell you what my oncologist says,"I do not know I left my crystal ball at home today. I have seen the best prognosis do the worst and the worst prognosis do the best. So go home and do a lot of praying". I think this is very true. I hope this e-mail does not sound insensative in any way and I will say a prayer for your mother. hang in there!

[Jackie]

Hi Linda,

You are well informed about this topic, and I think you ought to listen to your intuition. As Annemarie advised, by all means, get a second and maybe even third opinion about your mother's condition. By the looks of the patients in the chemo clinic I go to, my onc and her associates seem to treat regardless of age. I really feel that physical condition should be more of a consideration than mere age. There are hormonal drugs to try if your mother qualifies, although I don't know their appropriateness for metastisis to the lung area. Many of the chemo drugs administered for metastatic disease are not as difficult to tolerate as when they are trying to eradicate the cancer after initial diagnosis, so she may be able to tolerate them without too much difficulty. Also, some are gentler than others. Any way you look at it, it can't hurt to obtain additional opinions, and it can ease your and your mother's minds. As we often read on this board, oncs who just tell you to go home and get your affairs in order are not always correct! Hope this helps and I wish you both the strength and resolve to deal with this.
Love, Jackie

[Patty D]

Hi Linda- I agree with AnneMarie and Jackie- get another opinion or even consider changing oncs if you feel the current one is not offering options/there are plenty of options- regardless of age etc.
My original breast ca was dx in 1994- chemo worked well & I was fine for 9 years then it came back in my lungs. I was put on herceptin weekly and Taxotere every 3 weeks for 4 months. It was very sucessful! My follow up scans showed everything was gone! They have remained clean since them.
Unfortunately I did develop brain mets which were treated with WBR and Cyberknife and mets to my bones which I am currently being treated for with a monthly injection of Faslodex -more appropriate says my onc than chemo for this case.
One thing I urge is that if your mom has lung cancer make sure she gets a brain scan (MRI) regularly even if she has no symtoms- It is crucial to catch these early to get the right treatment. There is alot of sucess with the radiation, cyberknife etd. Hopefully you Mom will not develop this but it is rather common for Stage 4 pt.especially those that have had it in the lungs
I get one every three months along with all y other scans.
And yes she should get a will and durable power of attorney written up right away. This is a must! We should all have one on file-.
Take care-I know your mom will do well. God Bless....Patty D

[*_Ron_*]

Linda in Calif.

My wife was diagnosed with lung mets to both lungs in July 2003. She was placed on Taxotere and Herceptin first. She did not tolerate the combo, so Herceptin was held. The important part though was that the tumors were shrinking. After a few months the Onc. changed her to Taxol as she was having too many side effects. The Taxol was better for her until we added Herceptin again then had to stop the Herceptin. The lung tumors continued to shrink with the taxanes.

We had to stop all chemo in order to do WBR and the lung tumors started to grow during that time. Now Cyndi is taking Gemzar and Herceptin, she is tolerating the combo well. The only problem is that the tumors are only stabile and not shrinking. From what I read, I think Gemzar is generally well tolerated and may be a good choice for your Mom.

I do not know if your Mom could qualify for Abraxane, but it will be available in the next forty-five days or so. Since it is a taxane, it would probably be a reasonable choice to shrink the tumors.

God Bless You,
ron

[Patty H]

I have lung mets. One main one that we use as a marker to see if the chemo is working and some small ones that only show on a pet scan. My Dr. has me on chemo and he starts with the ones that have the least side affect. I am on navelbine and herceptin and I have good quality of life. My last scan showed it wasn't shrinking but not growing either, so we will continue on it. I agree that your Mom needs a second opinion. I don't consider her old and if she sounds strong enough to fight this. Patty H

[Lyn]

Hi Linda, I don't know your onc but already I don't like him. I had Femara in 2000 did nothing for me and I only gave it about a month and switched to Taxotere, that didn't last long either and switched to Navelbine and so on. Just because of you mum's age it is no excuse, age is a state of mind. My onc treats anyone who is willing to give it a go, 80, 90, half dead as long as there is a will there is a way, and I am not talking about Last Will and Testomony either. By the way I was supposed to be dead in and around 2000 now today throught perserverience I am NED and 50. How long for I don't know but I will keep on going if somethingelse comes about. I had a lady onc fill in, nice lady but wrong answer, 12 months ago she didn't even want to give me a MRI let alone discuss any treatment, she said it was pointless because they couldn't do anything any way, wrong answer and thanks to the realationship I have with my onc and the info on this site I am sitting here today writing to you. So been doing this since 1998 and it is like having a permanent job dealing with it and all the baggage that goes along with it. Sometimes I tell myself I am not doing anymore but I always do. The best thing you and your mum can do is take charge of the situation because they don't know everything and they will admit to it if they are genuine, there are too many cancers for them to have the answers to all of them and I have been feeding my onc info since I found herceptin which he wasn't even going to consider because of the documented side effects, so there you have it and because I am still alive and not dead years ago like I should have been, his words he just follows my instructions and passes on the treatments to his other patients. So my prayers are with you and your mum, and keep beating at it, our lives are like a computer game, we just get to one level and something either good or bad pops out in front of us and we keep on playing.

Love & Hugs Lyn

[Lolly]

Linda, I think the new regimens for metastatic disease are much more easily tolerated than first-line treatment, I have experienced that myself and see and talk to older folks at my treatment center who are usually doing quite well managing side effects. If a chemo seems too harsh the dosage is changed or a different chemo tried. The bottom line is your mom is healthy and strong and there's every reason to hope she has many more years left. I agree with the others, second and third opinions are warranted. I'll be keeping you both in my thoughts and prayers.

Love, Lolly

[Hope]

Hi Linda, I agree with what all these ladies are saying. Keep fighting for your mom. God is great and I will certainly keep her in my prayers.