Book Recommendation

vlcarr · 07-16-2010, 08:59 PM

I just read a book titled, After Breast Cancer, Answers to the Questions You're Afraid to Ask by Musa Mayer. The book is a Patient-Centered Guide.

What I found most helpful was the information on follow up care and the explanation as to why doctors do not perform more tests as part of follow up care. I know several of us, including me, found this a cause for concern and we've discussed this on several threads.

What really made me feel better was the book told me exactly what my onc told me. I'm not saying it was easy to read some of this, but it gives facts & stats as to why this isn't done and explains all the tests that can be done in great detail.

I'm a realist and I like to know all the facts and understand the why's of things.

The entire book was very good and I could not put it down. I just finished my treatment so it was timely for me. The main topics of the book are:

Common fears after treatment ends
Stories and advice from other survivors
Follow up testing
Facts about recurrence
How your risk lessens over time
Ways to reduce your "worry time"

I would highly recommend it. Some of you may already be familiar with it, but wanted to share just in case it hasn't been mentioned.

BonnieR · 07-16-2010, 09:19 PM

I LOVE this book. I received it in the mail when treatment was finished. As far as I could tell it had been sent by the Herceptin manufacturer.
It really does have terrific information and suggestions.
Thanks for posting about it!

krisvell · 07-17-2010, 07:52 AM

Vicky, Thank you for sharing. I just finished this book about a month ago and agree it was very helpful. There are several similar Chapters in the Susan Love "Breast Book" that re-inforced it. I just finished my Herceptin treatment on June 22nd and the Dr ordered a PET scan and told me it might open up a can of worms. She was right. They found stuff on my liver; had to go for an MRI and Thankfully, it wasn't cancer. Now that I've lived thru the waiting, I'm starting to come around to what they say in the book. It won't make a difference in the outcome if (god-forbid) it's found clinically rather than doing scans. Like you, I want to know the facts; even if they stink.
Kris....

weety · 07-17-2010, 08:18 AM

I just looked it up, but the edition was printed in 2003. Do you know if there is a newer edition? Is it still worth getting even though it's pretty old in terms of science?

vlcarr · 07-17-2010, 10:12 AM

I think so because the facts they used are still relevant. Just my opinion. I also got this book from the Herceptin folks and I don't think they would send it if the information wasn't still up to date.

The others can give their opinions too but it really did help me understand what I had been told and what I've read.

BonnieR · 07-17-2010, 12:46 PM

I agree, Vicky. It is not so much a "scientific" book as it is a supportive one about how to be a post- treatment survivor.

v-ness · 07-17-2010, 06:36 PM

i love this book too and when genentech accidently sent me 3 more copies after the original one they sent i passed them out like candy to my BC friends. oddly enough, right now i am far too distracted with other things to even think twice about my breast cancer/treatment though it hasn't even been a year yet since diagnosis. my mom, who had a massive pulmonary embolism in april, spent 2 mos in rehab, was watched for rising ovarian cancer tumor markers, died june 22. despite ovarian tumor markers, she actually had pancreatic cancer, and pulmonary edema and infarction hastened her death. i can't believe that half the time my mom was taking care of me this year, knitting me a sweater, making me healthy food, accompanying me to chemo and herceptin - SHE had cancer. and now she is gone and i feel just terrible. i miss her so. valerie

bejuce · 07-17-2010, 08:16 PM

Oh, Valerie, I'm so sorry about your mom. Don't know what to say, really. Healing thoughts and prayers to you.

Glad to hear that you're not thinking about cancer too much anymore.

And yes, I agree on the book. I also got multiple copies in the mail. I loved it! Very, very helpful.

BonnieR · 07-17-2010, 08:33 PM

Oh, Valerie, I see by your signature you have had alot of loss and turmoil in the last few years. I just want to hug you. I hope that therapy cat in your photo is giving you comfort.
Are there any support groups or counselors you can be with right now?
I am sure your mother cherished every moment that she was helping you and being "mom"
God bless you. Keep the faith.

Jackie07 · 07-17-2010, 11:36 PM

Valerie,

So sorry for your loss. It's really too much for you having to bear all the sorrows in such a short period of time.

I echo everyone's good advice and just wanted to caution that Mammagram is not 100% accurate. As a matter of fact, it's only accurate 70% of the time. All my doctors/specialist/technicians mistook my recurrence as 'scar tissue'. I just wanted to remind everyone to 'listen to your body' and not blindly trust the 'good news' rendered by your health care provider.

I kept myself quite busy and never was worried about the recurrence. And when the local/regional recurrence was found, we just treat it again.

vlcarr · 07-19-2010, 04:41 PM

Valerie,
I'm so so sorry to hear about your mother.

I remember we started rads around the same time and had several posts back & forth. I think you also gave me some advice on the eyebrow issue. You truly have endured more than your share. Please know you are in my thoughts

v-ness · 07-24-2010, 09:56 PM

thank you everybody. i am having an extremely difficult time of it. bonnier, the cat in my profile picture, tiger, died the same night as my mother. within half an hour, in fact. i had 'virtually adopted' him at Best Friends Animal Society in utah and just saw him june 1-6 when he was doing great, going on walks on his leash and catching lizards. then 2 wks after i left he swiftly declined and i got the call about him as soon as i got home from the hospital after my mother had died.

i couldn't make this stuff up.

anyway, i knew my june time with tiger was bonus. i never thought i'd see him again after my february visit and i am fortunate he lived long enough for us to have more quality time.

my mom was a shock and i miss her something awful. her house was on the marker for 2 1/2 yrs already and just sold, so my sisters and i are plunged into having to empty it. they are not able to deal with her closet, her bureau drawers, much less mixing her ashes with our father's, as they wished. so i have done those things. but i am suffering emotionally. right now i am on a short unpaid leave from work (i have no paid or sick time left, what with my leave after bob died then all the cancer time off). trying to get a handle on my emotions with my shrink and onco. it's not just pure grief because of the cancer aspect and the knowledge that mom was taking care of me while she was dying. i feel guilty and feel like i should have known something was really wrong before she ended up in the ICU.

i thought things couldn't get harder after bob died. then breast cancer happened. and now mom. someone naturally gave me that quote that god doesn't give you more than you can handle.... but i am afraid i have to really disagree on that one.

thank you for your thoughts on my behalf and the virtual hugs. i need them all and appreciate them greatly. i am glad to have this place to vent.

i'm worrying about cancer again now because of the stress i've been under. it's like how dare i think i can beat cancer when it's killed the 2 people closest to me, and 2 of my cats in one year. i have to somehow get my mojo back and i don't even begin to know how at this point.

valerie

vlcarr · 07-25-2010, 11:38 PM

Dear Valerie,

No wonder you are having a hard time. Who wouldn't be? Guilt is understandable but if you were my daughter (and I do have any only child (daughter) it would have given me great joy and peace to know that I was able to put her needs before mine even if I knew my health was not good. Because, I think all parents worst nightmare is that their child will die before they do. I don't know if your mother knew she was dying or not, but if I were in her shoes I would have put you first. That's what good mothers do and it's very evident your mother was a GREAT one.

I hope you find peace & comfort and are able to reflect back on your time with your Mom and Tiger as a gift. I know that will take time, and grief must be gone through first.

Please know I'm keeping you in my heart.

BonnieR · 07-26-2010, 09:47 PM

I remember the Tiger story now. God's cat. It was a heartwarming time for both of you. And for us who you shared it with.
I know what you are saying about God not giving us more than we can handle. What exactly does that MEAN?? For one thing it does serve to show us we are stronger than we thought, I guess. And can survive what seems unbearable. But then, what choice do we have but to put one foot in front of the other.
I hate that you have had so much happen all at once. It is wrong and unfair.
I hope you have people to offer you support right now. And I hope you will consider medication to relieve anxiety and depression if it would help.
I wish it was different. But keep the faith.