Pep talk?

helena67

Feeling a bit doom and gloom lately and it's at least another 8 weeks until my next Dr's appointment. She does not say too much about prognoses anyway.

Maybe it sounds a bit silly but has anyone with Stage 3 received some happy 'pep talk' 'Yes You Are Going to be Fine' from their Onc that you could share? Something that is recent and believable? I was browsing through the Johns Hopkins Expert discussion forum but everything re: Stage 3 tends to be kind of negative. I know, don't read things that you don't want to see, but.......

Okeover

Hi Helena,

 a couple things my oncologists said that did pep me up: "I am optimisitc about your prognosis"

and, from my rad oncologist: "We're just the mop up crew (after chemo + surgery), here to make sure that you are cured." Yep, he used the good "c" word. I'm 11 months ahead of you in terms of treatment and survival, and I have a very good QoL (Ok, I'm recovering from a TRAM flap right now, so I AM sore, but still). Lots of times I let myself think and feel that everything is going to be all right.

I hope that this helps a bit. Take care and keep on.

best,

Rachel

KerryMac

Oh, I know, sometimes I just wish my Onc would just say, "don't worry, you will be fine". She is very good at deflecting my fears with "We are doing everything we can." Which, I guess, at the end of the day is true. She doesn't know if I am going to be OK, none of them do. I've never got any stats from her, as I decided that it wasn't going to make any difference to what happens to me.

All I can hold on to are other womens survival stories on these boards, and the fact that I have done all medically possible. I have just had 4 months of Chemo, am about to start Rads, and will be on Hormones after an ooph. I am exercising my 3-5 hours a week, and I am eating loads of fruit and vege. I am not sure there is much more I can do. I can only hope it is enough....

everyminute

My rad oncologist told me "We wouldnt have treated you so aggressively if we didnt think it was possible to cure you" 

My oncologist said " Stastically, we should be able to cure you"

There is a memorial sloan kettering study - I will try to find it for you - that was very promising for a mostly stage 3 group.  5 year survival was like 90% (as opposed to the other ugly %'s we see)

everyminute

Here is the summary - thanks Timothy.... 

PURPOSE: To determine intervals between surgery and adjuvant chemotherapy and radiation in patients treated with mastectomy with immediate expander-implant reconstruction, and to evaluate locoregional and distant control and overall survival in these patients. METHODS AND MATERIALS: Between May 1996 and March 2004, 104 patients with Stage II-III breast cancer were routinely treated at our institution under the following algorithm: (1) definitive mastectomy with axillary lymph node dissection and immediate tissue expander placement, (2) tissue expansion during chemotherapy, (3) exchange of tissue expander for permanent implant, (4) radiation. Patient, disease, and treatment characteristics and clinical outcomes were retrospectively evaluated. RESULTS: Median age was 45 years. Twenty-six percent of patients were Stage II and 74% Stage III. All received adjuvant chemotherapy. Estrogen receptor staining was positive in 77%, and 78% received hormone therapy. Radiation was delivered to the chest wall with daily 0.5-cm bolus and to the supraclavicular fossa. Median dose was 5,040 cGy. Median interval from surgery to chemotherapy was 5 weeks, from completion of chemotherapy to exchange 4 weeks, and from exchange to radiation 4 weeks. Median interval from completion of chemotherapy to start of radiation was 8 weeks. Median follow-up was 64 months from date of mastectomy. The 5-year rate for locoregional disease control was 100%, for distant metastasis-free survival 90%, and for overall survival 96%. CONCLUSIONS: Mastectomy with immediate expander-implant reconstruction, adjuvant chemotherapy, and radiation results in a median interval of 8 weeks from completion of chemotherapy to initiation of radiation and seems to be associated with acceptable 5-year locoregional control, distant metastasis-free survival, and overall survival.

KerryMac

That study posted by everyminute is one I keep coming back to! I love how 96% survival is "acceptable"!

There are another couple of studies i have come across - they have been previously posted by other people, and I like their %'s too.

This one gives 85% survival at 5 years for Stage 111A, following Chemo, Rads and hormones

http://www.cancernetwork.com/cancer-management/chapter11/article/10165/1170821?pageNumber=2 

This one gives 70% 5 year DFS for 10 + positive nodes...

http://www.pslgroup.com/dg/25a522.htm 

DCMom

WOW!  I love you all for posting these stats.  I usually avoid anything with a glimpse of a number, but this made my day!  Thank you everyminute you are my hero.

JacquelineG

Thank you everyminute and Kerry Mac, I was also in need of a pep talk and I just LOVE that MSK study -- i keep reading it over and over

 I think we Stage 3ers are often in need of these pep talks and threads of hope... lets keep them coming! Like you, Kerry Mac, I wish my oncologist said 'you are going to be fine'. I know she wants to, but when I say something like "I just don't want my cancer to come back' she'll reply, "no one wants their cancer to come back" (not the "Oh, don't worry it won't come back" which is what i really want to hear!)

Thank you!!

jackie

DCMom

I don't understand why they can't make comments like it doesn't come back for most people or most people don't get it back for a long time.  Those with a reoccurence right away (unless diagnosed at stage IV) are in the minority by all statistics after chemo and radiation.  My first onc was so doom and gloom his comments have been the hardest emotional baggage to get out from under.  My second oncologist quoted the same statistics, but never said survivability he said cure, he never quoted the bad side of the stats he quoted the good side.  Gotta love an oncologist that is confident in his work!  I'd like to hear anyone say they loved the negativity of their oncologist because it helped so much in the process...what are they thinking?

everyminute

Most of us will be here in 10 years.  Even using the 67% stastics which are floating around - that is 2 TIMES more likely than not! But gotta love 96% 

helena67

THANKS guys. Most days I feel fairly OK between the ears (so to speak). Not so today. Part of it is that I recently started working again. It's a lot of computer work and my brain just feels so slow and I wonder whether it will stay that way and when it will get better. I could really use an Onc visit every week just for reassurance. In that respect, I still feel pretty needy.

YATCOMW

I think we were all needy the first couple of years.....I think we all searched for things that provided us hope.....any hope.

My final oncologists that I aligned myself with have always been very optomistic----in fact they would always act like "what are you so worried about?  You are going to be fine."  And I have been.  But I certainly understand the need for reassurance.

Hey.....you'll be fine!!!!

Jacqueline

KerryMac

This is a great thread! My Husband always tells me that even though the stats are frightening sometimes, there is still a big door to go through. As everyminute says, even using 67%, odds are in our favour. Even more so at 96%!

I just think Oncs can't give any guarantees, as they know there aren't any. Cancer is tricky and sneaky and makes no sense. I bet they don't give guarantees to Stage 2 women either. End of day, there are no guarantees.

I do think those of us just finishing treatment are sure to feel especially vulnerable, it is still so new. I have seen an Oncology Psychiatrist, and she said at this point in treatment I should be feeling like I am, that learning to live a "new normal" will take a while. She assured me that I would one day go whole days without thinking about cancer. Imagine that!

KerryMac

Jacqueline - I have to add, every time I see one of your posts I feel better! Happy Five Years!!

lexislove

I am one of those "in between" girls stage 2B. Huge tumor, but no nodes. My tumor was 8cm and it scared the crap out of me!  My onc said it was like a pig, real big but didn't move.

Anyways, I had a meltdown after finishing my rads, everything just hit me what I had been through and I called my onc.He returned my call, I told him that I didn't know how to move on after this BC garbage. I also said that I have no hope. He told me to focus on the fact that I am probably cured of BC but there is no test that can tell us 100%. That statement runs through my head daily, and I hang onto those words.

I also have to say the first day I met my onc and just had my BC diagnosis, the first question I asked him was am I going to die? He said no. I then said, this is not curable right? He then gave me a questionable look and said, hmmmm.... this can be cured.

My onc is in his late 30's and knows all the new BC info. I feel so blessed to have him as my doc. I don't have a crystal ball, but I think all of us here will get old and wrinkly...well...hopefully not too wrinkly

lexislove

Yes Jaqueline!

I'm glad that you pop in from time to time and give us YOUR pep talk.

Many..many thanks.

Sam

KerryMac

I will happily get old AND wrinkly!

diana50

7 years NED and working on number 8 year NED>  my friend with same Dx is coming on 10 years NED.  how is that for a pep talk?

everyminute

Thanks to all the pep talkers!

This is not a peppy story but puts things in perspective - a neighbor of mine, mid 30s with a young daughter collapsed last night - anureism (sp?).  Not looking good for her to come out of it.  Bet she wishes she had breast cancer instead.  There are no guarantees.

Mamita49

 Like to say thanks to those nice and kind words as well. Just what I needed today.

Had a bad, really bad day. At the MUGA scan today, tears rolling down. I just so much hate the hospital.

Its my Job to worry about my kids, not their Job to worry about me, thats all I could think about. Will I survive the next years, go through this hell again, though Chemo is not my worry, I am doing very well on my meds, its just that I want to have small little problems everybody has, like will I get a parking lot, or what should I wear tomorrow morning. I still think about BC every freaking day.

I know it will get better as time goes by .

KerryMac, I like your attitude, wish my girls can one day pick my retire home.

Best wishes to all

Carol 

YATCOMW

It's so funny how much we all go through the same thing....

Carol....I still have those thoughts of ......all I want to worry about is what to have for dinner....or who is going to take which kid to soccer..and will I like the next boyfriend my daughter brings home.......I see people out walking their dogs with their friends and think....'they have no idea how great their life is'.

But you should be positive because you are er/pr+ ....my doctor says there is an "arsenal" out there for that.  and having 2 nodes positive...well with chemo they say it is almost like being node negative.  So try to think positive and believe those kids will definitely be picking out the old folks home...seriously.

With more time on your side you'll be thinking about who those kids will be marrying and holding grandbabies....and less about this beast.  Really.

All the best,

Jacqueline

YATCOMW

KerryMac...

thanks so much....yes 5 years in 12 days 17 hours and 29 minutes.....but who's counting....(smile)

Jacqueline

helena67

Thanks Jacqueline from me too. You have picked me up a few times!

-Helena.

gardenbird

Hello Helena,

Just really great to read the responses you got above, thank you all.  I was diagnosed and treated here in Holland.  When I first got my dire results I was just so panicked I asked my surgeon "but can it be cured" and he looked at me directly and said "yes".  Now of course afterwards I have read about and researched and tried to find positive stories everywhere, and I have found out that the "cure" word is not used, but I really hang on to that little word, it carries enormous power.  Also when I had finished all my treatment and had my visit with my oncologist, as I was leaving his office he said to me "you are better now, just believe it", also words I have replayed time and time again. Now of course I know that with my 22 lymph nodes affected, my chances may be less than others, I really know that as well.  We have just bought a new house and I think to myself, will I be here to see the garden mature, will I be here to see the neighbourhood mature, will I be here to see my children off from this launching pad into the world.  But I also remember when I was choosing my kitchen 2 years ago I had my wig on and I was wondering if I would even get to move into the house at all and yet here I am.  I still panic sometimes and I never realized how much I want to live, and to live to be old.  The cancer diagnosis has forced me to change my diet, do exercise, drink less wine (a pity!) and live for the moment.  Sorry for the long post, but this issue is always on my mind.  I really hope that we will all survive for a long time and most importantly that a definitive cure can be found, especially for Stage IV, so that dying from cancer will be a thing of the past for everyone.

KerryMac

There is a book that was recommended to me by my Psyciatrist. I have just ordered it, so not sure if it is good or not but she thinks it will be! It is called "After Breast Cancer" by Hester Hill Schnipper. Not sure if anyone has read it or of it is helpful.

YATCOMW

My sister gave me the book.....it is definitely worth reading......the author "gets it" and it is an easy and quck read.

Jacqueline

everyminute

yes - great book.  My favorite line is "You have to live as though it is never coming back - otherwise cancer wins"

by the way, the young woman with the anurism passed away last night.

helena67

That is very sad. It makes you wonder if we appreciate things enough. So much time wasted on chores and so-called must-do's....

helena67

Thanks for your kind posting irisheyes!

Indeed, I hope we all will be OK. I have small children too so I understand you quite well. My wig is now washed and in a box in the very back of the closet! My own hair is a fuzzy mess, but, what the heck!

KerryMac

So sad about the woman with the aneurysm. Life does not seem fair sometimes. I had a friend who died from one about ten years ago, she was in her early 30's too. I have thought of her a lot since I was diagnosed, and I have thought things could have been worse for me. At least we have something treatable, my friend was brain dead before the ambulance arrived....

Gitane

helena, I have enjoyed reading the posts on this thread.  I'm glad you started it.  I was paralyzed with fear when I was told the top half of my breast was full of cancer, over an 8 cm area, and it was pleomorphic lobular, not good.  My onc was "optimistic" that I would live a long life, but I wouldn't believe it.  Some days I still don't, but I'm getting better.  One day a sweet woman was leaving his office just as I entered.  He said,  "23 positive nodes, 8 centimeter tumor, 12 years out!  Have hope!"  That was really a lesson to me,  I'll not forget it.  Irisheyes, Have HOPE.

KerryMac,  I really liked Hester's book, I got it not long after my diagnosis and it was helpful.  Another book that helps me is "Picking Up the Pieces" by Sherri Magee, and Kathy Scalzo.