Need some opinions re support for Stage IV patients
Yesterday I (this went to all peer navigators) received an inquiry from the program asking if I'd like to be trained to work with Stage IV patients. I'm not sure what our role would be in this instance or if Stage IV patients would even want a peer navigator. After all, the gist of the peer navigator is that we've been there, done that.
So I'm asking all my pink sisters here if you see a need for a "peer" for patients with Stage IV breast cancer. I've learned so much from traveling with you on your journeys and know that you seek support or you wouldn't post here, but would you want a stranger to walk this journey with you personally?
Suzanne
Comments
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Not sure I see what difference it makes
Hi Suzanne,
I guess I don't understand why the organization has a different program (I'm assuming it's different if it requires different training) based on stage. Why do you think stage IV patients might not want a peer navigator? All stage IV means is that the patient has mets. It could be a new diagnosis, a recurrence, or a progression from a lower stage. The same could be true for any other stage. Or is your concern that you personally were not stage IV so you wouldn't be a true peer?
Seems to me that some cancer patients would want a peer navigation and some would not, but I think that is more a function of individual preference, not what stage of cancer they have.0 -
Suzanne, like your current
Suzanne, like your current program I think you would find there are stage IV folks with varying levels of need. So I think it's worth asking more questions.
I really admire what you do and I love that you give back.
Hugs,
Linda0 -
Being a freshmanNancyJac said:Not sure I see what difference it makes
Hi Suzanne,
I guess I don't understand why the organization has a different program (I'm assuming it's different if it requires different training) based on stage. Why do you think stage IV patients might not want a peer navigator? All stage IV means is that the patient has mets. It could be a new diagnosis, a recurrence, or a progression from a lower stage. The same could be true for any other stage. Or is your concern that you personally were not stage IV so you wouldn't be a true peer?
Seems to me that some cancer patients would want a peer navigation and some would not, but I think that is more a function of individual preference, not what stage of cancer they have.
Suzanne
As you know I am only two week since my new diagnosis. It is shocking and hard. I agree with your medical center it is required a special training due to very a delicate situation. Nobody can be prepared to hear stage IV diagnosis weather it is initial, recurrence or progression.
Any help is useful and if patient wants a navigator could be a blessing.
NancyJac I do not your diagnosis, believe me it is a different ball game.
Suzanne, please take this training, you have a very good heart and compassion. You will be a good navigator, however it can be very hard on you as nobody can predict the future
New Flower0 -
My cancer center...Gabe N Abby Mom said:Suzanne, like your current
Suzanne, like your current program I think you would find there are stage IV folks with varying levels of need. So I think it's worth asking more questions.
I really admire what you do and I love that you give back.
Hugs,
Linda
My cancer center provides all kind of support for all stages if bc....other than support groups, all the other navigators though are RN's who's specialty is dealing with bc....the first one that I saw was, one of the RN's when I was diagnosed the first time in 2009..she walked my husband and I through all the treatments I would need, explained everything....since I was dx again in June of last year as stage IV I haven't seen anyone...my choice..
If you feel comfortable with dealing with Stage IV patients, I'd say go for it! I think you'd be wonderful!
Hugs, Nancy0 -
Suzanne
I think there is a need and with training you would be great at this. After initial diagnosis, I went back to school to get a degree in Human Services. My internship was suppose to be a 10 weeks, I chose hospice volunteer, and it ended up being a year. You develop relationships, and all have amazing life stories, are in different stages of end stage.
I can only speak for myself as a stage iv, and I will tell you that there was a huge difference between my initial diagnosis and my mets diagnosis!!!
Initial diagnosis was about getting rid of the cancer. This was done with a mastectomy. Chemo was for insurance, and then reconstruction. After treatment, it was about making life changes and living life to the fullest.
When I was diagnosed with mets, it had already spread thoughout my bones and my skin. Chemo is palliative as are pain pills and radiation. On chemo it spread to my liver, connective tissue in my ribs and lungs. I was told to make arrangements, ie. a will and DNR. This round is about acceptance, on my mortality, that I need a wheelchair to go to a mall or for 'walks'. That I will be on chemo forever. Without pain meds I cant function. Most people would never know, because with hair again I 'look good', and with pain meds I can move again.
I haven't given up hope, but it gets harder with each bad scan, mri or ct scan. So I keep setting new goals to keep me going, and I still have fun.
Suzanne, keep doing what you are doing.0 -
Hey Suzanne
Hi & How are you doing? I think it is a good idea for you to become a patient navigator for Stage IV patiients as a way to give back to other cancer patients. Yes, not everyone will accept your help. You will be there to be a blessing for those patients that need someone who has had a similiar experiences and they can relate. So you go for it and get your training say a prayer that God will give you the strength to endure the mutltiple journeys you will take with the Stage IV patients. Pray during your training, after training, and daily when you become a full patient navigator. Prayer, faith in God, and talking to friends and family but remember patient confidentality. No names or other identifying info. I was an intern for an Applied Human Services course and volunteer at a Transitional House for drug users,and they had multiple houses 3 for men,and opened the first woman's house while I was volunteering. That was an exciting experience. I promised I would go back to volunteer for at least a month to give back to them. I applaud any one who is trying to kick a drug habit or stop drinking alcohol before it kills them. Suzanne you will be great as a patient navigator because of your wonderful attitude towards life and your beautiful spirit.
Peace, Blessings,Love, & Hugs,
Stacey0 -
Hey Suzanne
Hi & How are you doing? I think it is a good idea for you to become a patient navigator for Stage IV patiients as a way to give back to other cancer patients. Yes, not everyone will accept your help. You will be there to be a blessing for those patients that need someone who has had a similiar experiences and they can relate. So you go for it and get your training say a prayer that God will give you the strength to endure the mutltiple journeys you will take with the Stage IV patients. Pray during your training, after training, and daily when you become a full patient navigator. Prayer, faith in God, and talking to friends and family but remember patient confidentality. No names or other identifying info. I was an intern for an Applied Human Services course and volunteer at a Transitional House for drug users,and they had multiple houses 3 for men,and opened the first woman's house while I was volunteering. That was an exciting experience. I promised I would go back to volunteer for at least a month to give back to them. I applaud any one who is trying to kick a drug habit or stop drinking alcohol before it kills them. Suzanne you will be great as a patient navigator because of your wonderful attitude towards life and your beautiful spirit.
Peace, Blessings,Love, & Hugs,
Stacey0 -
Suzanne I love the fact that you are reaching outStaceyPMD1121 said:Hey Suzanne
Hi & How are you doing? I think it is a good idea for you to become a patient navigator for Stage IV patiients as a way to give back to other cancer patients. Yes, not everyone will accept your help. You will be there to be a blessing for those patients that need someone who has had a similiar experiences and they can relate. So you go for it and get your training say a prayer that God will give you the strength to endure the mutltiple journeys you will take with the Stage IV patients. Pray during your training, after training, and daily when you become a full patient navigator. Prayer, faith in God, and talking to friends and family but remember patient confidentality. No names or other identifying info. I was an intern for an Applied Human Services course and volunteer at a Transitional House for drug users,and they had multiple houses 3 for men,and opened the first woman's house while I was volunteering. That was an exciting experience. I promised I would go back to volunteer for at least a month to give back to them. I applaud any one who is trying to kick a drug habit or stop drinking alcohol before it kills them. Suzanne you will be great as a patient navigator because of your wonderful attitude towards life and your beautiful spirit.
Peace, Blessings,Love, & Hugs,
Stacey
and giving back. For me, being re-diagnosed at Stage IV six months ago was almost more devastating than my initial diagnosis. At the time, I felt my hope and courage for all that I'd already been through, had gone out the window. I felt very alone, scared, vulnerable and sad--really, really sad.
My facilities did not have a patient navigator that I was aware of, but I was already in a cancer support group and clung onto them for dear life. Many in my group were Stage IV and their words of encouragement, comfort, and advice were so important. I remember after I first learned about the mets, I went to my group meeting and cried and cried while I told my new story. It helped to let it all out to people who were where I was or just people who had cancer and feared they might be Stage IV one day. Don't get me wrong--my husband, son, daughter-in-law and friends are unbelievably wonderful and supportive, but none of them have cancer (thank God).
Suzanne, as with anything in life, there will be people, I'm sure, who handle this in another way. But, I think what you're doing will benefit so many and I'm so happy and proud to call you a sister.
Love and hugs, Renee0 -
Go For It!
Dear Suzanne,
I believe you would make a wonderful peer advisor for stage IV. I always enjoy reading your posts. More than that, if you don't understand something you ask and do so in a very nice way.
Stage IV is very different than the other stages. You had a diagnose and you understand the difference between the other stages and stage IV. What most people need is someone to talk with, to bounce off their fears with someone that has a clue in what their dealing with learning about stage IV.
I am not saying that family doesn't understand they usually do. Because they are so close, you really don't want to frighten them anymore than you have too. Having someone else to be there to listen to them can be enormously helpful.
My opinion is go for it, Ms Suzanne.
Best,
Doris0 -
For Nancy = Meaning of Stage IV
Dear Nancy,
"All stage IV means is that the patient has mets."
There is a big difference between stages 0, 1, 2, 3 and stage IV. Once you enter the stage IV area, there is no cure unlike the other stages that allow you to go on to live your life free of cancer.
They can treat you and many like to believe it is a chronic disease but it isn't in the end, those malignant cancer cells will kill you. That is the difference. I have been reading online forums since 1997 and I will state this that without exception everyone who was stage IV eventually died.
The difference is big and when you read the report that makes you stage IV, you will understand. There is a difference in having been diagnose, completing treatment and being declared NED for you then have hope to survive this awful ordeal and go on to live your life.
There is a difference in having a new cancer and beginning the whole process again or having a regional or local recurrences, you still have a chance of being NED and going on to live your life.
Stage IV means you will be in treatment all the days of your life except for minor mini breaks.
Your comment sounded condescending that it only means "mets", I am sure you didn't mean it that way.
Doris0 -
A Wonderful Good that You Do, Suzanne.
Suzanne... you make my heart smile because I can so see you being a peer navigator to Stage IV Survivors. I think the program is fortunate to have Survivors such as yourself who are very giving and show compassion to others dealing with a very difficult diagnosis, Stage IV.
Let us know how it goes. I, too, believe in extending to others in need. I try and practice it whenever an opportunity presents itself. My dear Sister from Another Mother, Zena, practiced this and so inspired me. I miss Zena dearly and am grateful to have known her during the year I battled breast cancer.
Take care, God bless.
Ines0 -
Yes, yes and yes.
Hi Suzanne,
You've been a part of every discussion I've joined on this board. I know what you've meant to me from my original DX last year, to the latest in May of this year. I know personally the difference between going through treatment and looking forward to getting back to normal and finding a new lump so soon and being DX Stage IV. To go from success, NED in December to your life span will now be greatly reduced by June, has been a slap in the face. A very brutal slap.
I wish I lived farther north than Oakdale because I'd find your help at UCDavis to be wonderful. I see a need since we're in a totally different ballgame than the other stages. I speak from experience that I wish I wasn't having.
You are a very special lady and that's what is needed when dealing with Stage IV. Go for it!
Hugs,
Lynne0 -
Dear Doris,SIROD said:For Nancy = Meaning of Stage IV
Dear Nancy,
"All stage IV means is that the patient has mets."
There is a big difference between stages 0, 1, 2, 3 and stage IV. Once you enter the stage IV area, there is no cure unlike the other stages that allow you to go on to live your life free of cancer.
They can treat you and many like to believe it is a chronic disease but it isn't in the end, those malignant cancer cells will kill you. That is the difference. I have been reading online forums since 1997 and I will state this that without exception everyone who was stage IV eventually died.
The difference is big and when you read the report that makes you stage IV, you will understand. There is a difference in having been diagnose, completing treatment and being declared NED for you then have hope to survive this awful ordeal and go on to live your life.
There is a difference in having a new cancer and beginning the whole process again or having a regional or local recurrences, you still have a chance of being NED and going on to live your life.
Stage IV means you will be in treatment all the days of your life except for minor mini breaks.
Your comment sounded condescending that it only means "mets", I am sure you didn't mean it that way.
Doris
I sincerely apologize if you feel my comment was condescending. The only point that I was trying to make was in the context of peer navigation which IMO and only IMO could fulfill the same needs for any given individual regardless of their stage of cancer. I would think that a person's life style circumstances (e.g. how much family/friend support they have available, their age, their financial and insurance situation, how well they deal with change, etc.) would be more of a factor in the desire and benefit of peer navigation than the diagnosed stage of cancer.
I have to respectfully disagree with stage 4 always being uncurable and terminal. Some mets can be eliminated (surgically or with chemo). And some people with other stages are not cured. I know/have known several people with stage 4 cancer who have subsequently been declared NED or have been living with stage 4 cancer for many years. Some of them have subsequently died of things not related to cancer (e.g. old age) and some of them are still living. We are all going on and living our lives regardless of the stage of our cancers.
I have also had some personal experience with having a new cancer and beginning the whole process again. My current cancer was initially diagnosed as 3B because of it being inflammatory breast cancer.
Again, I meant no condescension. I just don't believe it is accurate or beneficial to any one to automatically equate stage IV with dying or that those in other stages don't have the similar emotional or practical issues just because they aren't stage 4.0 -
NancyJackNancyJac said:Dear Doris,
I sincerely apologize if you feel my comment was condescending. The only point that I was trying to make was in the context of peer navigation which IMO and only IMO could fulfill the same needs for any given individual regardless of their stage of cancer. I would think that a person's life style circumstances (e.g. how much family/friend support they have available, their age, their financial and insurance situation, how well they deal with change, etc.) would be more of a factor in the desire and benefit of peer navigation than the diagnosed stage of cancer.
I have to respectfully disagree with stage 4 always being uncurable and terminal. Some mets can be eliminated (surgically or with chemo). And some people with other stages are not cured. I know/have known several people with stage 4 cancer who have subsequently been declared NED or have been living with stage 4 cancer for many years. Some of them have subsequently died of things not related to cancer (e.g. old age) and some of them are still living. We are all going on and living our lives regardless of the stage of our cancers.
I have also had some personal experience with having a new cancer and beginning the whole process again. My current cancer was initially diagnosed as 3B because of it being inflammatory breast cancer.
Again, I meant no condescension. I just don't believe it is accurate or beneficial to any one to automatically equate stage IV with dying or that those in other stages don't have the similar emotional or practical issues just because they aren't stage 4.
Nancy
While everyone has a right to express an opinion , You have offended many ( just read responses to understand it)
Doris only summarize and gave you very direct answer.
"just mets" mean a lot of different thing including pain and suffering which many stage IV survivors never share with friends. We are also trying protect other survivors from being scary and upset.
Please learn from others there a lot of wisdom around this board0 -
ok, my last post hereNew Flower said:NancyJack
Nancy
While everyone has a right to express an opinion , You have offended many ( just read responses to understand it)
Doris only summarize and gave you very direct answer.
"just mets" mean a lot of different thing including pain and suffering which many stage IV survivors never share with friends. We are also trying protect other survivors from being scary and upset.
Please learn from others there a lot of wisdom around this board
Not sure why I need to continue to defend myself, but once again, the supposed interpretation has taken my comment totally out of context. In context I believe it clearly communicates that the medical assignment of stage 4 to a diagnosis differs from stage 3 only in the addition of mets.
Yet again I apologize for offending. I am now also offended that my opinions seems to be unwanted or don't count or are offensive because I am not stage 4, and the implication that those who aren't stage 4 do not have pain and suffering. I didn't realize this is some sort stage clique or competition here. I was thrilled to find you all and hoped this would be a place where I could both get and give help but I guess that is not to be.
Sincerely wishing each and every one of you all the best in your journeys, however long or difficult they may be.0 -
Thank you for all the feedbackLynne Logan said:Yes, yes and yes.
Hi Suzanne,
You've been a part of every discussion I've joined on this board. I know what you've meant to me from my original DX last year, to the latest in May of this year. I know personally the difference between going through treatment and looking forward to getting back to normal and finding a new lump so soon and being DX Stage IV. To go from success, NED in December to your life span will now be greatly reduced by June, has been a slap in the face. A very brutal slap.
I wish I lived farther north than Oakdale because I'd find your help at UCDavis to be wonderful. I see a need since we're in a totally different ballgame than the other stages. I speak from experience that I wish I wasn't having.
You are a very special lady and that's what is needed when dealing with Stage IV. Go for it!
Hugs,
Lynne
And yes, I am going to do the training. I actually wrote a response last night, and it disappeared into cyberspace.
I have 2 close friends who also volunteer. One feels the program has overstepped its bounds and that oncologists will be up in arms over this. (initially there was some resistence from some oncologists, but they found that patients with peer navigators would come better prepared with questions at their appointments and that patients were more empowered - so they changed their tune). The original concept of the program is for "newly diagnosed". Well, stage IV may or may not be an initial diagnosis, but it is a new diagnosis whenever it is given. The other friend is supportive and is going to do the training.
And that's why I asked for your feedback. I knew I could count on honest opinions with nothing held back. Thank you so much. I'll let you know how it goes.
Suzanne0 -
make your own callDouble Whammy said:Thank you for all the feedback
And yes, I am going to do the training. I actually wrote a response last night, and it disappeared into cyberspace.
I have 2 close friends who also volunteer. One feels the program has overstepped its bounds and that oncologists will be up in arms over this. (initially there was some resistence from some oncologists, but they found that patients with peer navigators would come better prepared with questions at their appointments and that patients were more empowered - so they changed their tune). The original concept of the program is for "newly diagnosed". Well, stage IV may or may not be an initial diagnosis, but it is a new diagnosis whenever it is given. The other friend is supportive and is going to do the training.
And that's why I asked for your feedback. I knew I could count on honest opinions with nothing held back. Thank you so much. I'll let you know how it goes.
Suzanne
Sincerely yours
New Flower0 -
SUPPORT IS THE IMPORTANT ISSUE
Dear Suzanne,
Your smile alone will bring comfort to anyone in any stage of breast cancer. Double Whammy means to me that you have had cancer twice. Different Ballgame also means that I have had cancer twice. When you get a recurrence, you end up having more compassion and understanding of people who are experiencing cancer. You are in-tuned to them. You know how to relax and soothe them.
You radiate a warmth that is magic and will help all that you come in contact with. It makes no difference what stage a person is in. Everyone needs support and most everyone is so thankful for that support. So Suzanne, GO FOR IT!!!
By way Suzanne, i also volunteer at Lynn Sage Breast Center, Northwestern Memorial Hospital, Chicago. I escort women to their dressing room. They are there for further diagnostic breast testing...some for the first time and some for their annual follow up after their breast surgery. I hug them, with their permission. I am known as the Lady Who Gives Hugs. I am now getting repeats...meaning that I have hugged them before and they remember the hugs and me. I also make them laugh. Or...I give them knowledge. When I first started as a volunteer I wasn't sure if I would be able to handle it, emotionally. You grow with the job and become better and better at it, giving comfort and peace to many sisters.
Lots of Hugs,
Janelle0 -
A radiance always comesDouble Whammy said:Thank you for all the feedback
And yes, I am going to do the training. I actually wrote a response last night, and it disappeared into cyberspace.
I have 2 close friends who also volunteer. One feels the program has overstepped its bounds and that oncologists will be up in arms over this. (initially there was some resistence from some oncologists, but they found that patients with peer navigators would come better prepared with questions at their appointments and that patients were more empowered - so they changed their tune). The original concept of the program is for "newly diagnosed". Well, stage IV may or may not be an initial diagnosis, but it is a new diagnosis whenever it is given. The other friend is supportive and is going to do the training.
And that's why I asked for your feedback. I knew I could count on honest opinions with nothing held back. Thank you so much. I'll let you know how it goes.
Suzanne
A radiance always comes through your photo and smile and I believe that you would be awesome in helping patients whatever their stage. I also believe that most Stage 4 (myself included) could benefit from peer support. Thank you so much for doing this and let me know how it goes. My advice re the oncologists is to meet with them and present it in a way where they think it is their idea ;-)0 -
I understood youNancyJac said:ok, my last post here
Not sure why I need to continue to defend myself, but once again, the supposed interpretation has taken my comment totally out of context. In context I believe it clearly communicates that the medical assignment of stage 4 to a diagnosis differs from stage 3 only in the addition of mets.
Yet again I apologize for offending. I am now also offended that my opinions seems to be unwanted or don't count or are offensive because I am not stage 4, and the implication that those who aren't stage 4 do not have pain and suffering. I didn't realize this is some sort stage clique or competition here. I was thrilled to find you all and hoped this would be a place where I could both get and give help but I guess that is not to be.
Sincerely wishing each and every one of you all the best in your journeys, however long or difficult they may be.
Dear Nancy,
The fact that you apologized and explained fully what your intent was to the posting shows to me that you are one woman who definitely needs to be with us, giving us support and new thoughts. You are absolutely correct in that the written word can sometimes be taken totally out of context.
In fact, you are reminding me of my sister, so you know that I am going to become fond of you. Please stay with us and be patient with us. You have much to offer to this group and you have much to learn from us. It's a two-way street.
I have not posted much this year but from this day forward, I will be back reading and posting again with more frequency.
Lots of Hugs,
Janelle0
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