Concerned for my friend

bestiehasIBC

My best friend was diagnosed with IBC, HER2+ BRAC1 in November 2012. Her diagnosis was delayed due to the mis-diagnosis of mastitis from breastfeeding her infant child. Following official diagnosis, she began with Chemo followed by a double mastectomy. Tubes took an incredibly long time to come out and so radiation was delayed. During this time, cancer began to grow on the previously unaffected area and she had to go in for more surgery and a skin graft. During recovery from that surgery, she began more chemo and continued seeing her oncologist and plastic surgeon believing reconstruction was possible after all treatments were completed. Eventually, the skin irritation which was believed to be from the surgical tape became more and more irritating and finally they ordered a biopsy and found more cancer. At this point, her doctor made a point of saying that we are not even looking for reconstruction or even more children (she was hoping), but we just had to save her life. The new chemo (I'm sorry, I'm terrible with drug names) was in pill form, and I never felt like it did any good whatsoever. Cancer continued to grow. She has had a very positive attitude (or she lived in a fantasy world, not sure sometimes) and felt like the cancer was getting better, but I could see that it was not. So by the time the doctor decided this chemo wasn't working, she got her started on another intravenous kind and set her up for a meeting with a specialist in a hospital about an hour away. This specialist gave her grave news. That she would never be cancer free and would just be chasing down the cancer for the rest of her life. While I know doctors don't want to put a time limit on life expectancy, this doctor said definitely that 10 years was a real long shot. My friend heard 20 and so that is what she has been telling people, as if she has 20 years to live. This was about 3 weeks ago. Last week she went in for chemo and had an allergic reaction that caused a seizure and was rushed to the ER for tests. A full MRI showed a tumor in the brain. Cyber knife is planned and a new chemo drug (Kadcyla) is planned for after the cyber knife. Even with all this trauma, she still thinks I'm her crazy friend and that she is going to be just fine. She won't even consider switching doctors (long story, but I really think the 2nd doctor she saw would be so much better for her). 

Sorry it's so long, but I wanted to give you an idea of the background. My question is what is better for her right now? To let her live in the fantasy world where she will be alive to see her daughter reach adulthood? Or bring her back down to earth and have her prepare things for the milestones in her life, take vacations, make memories, etc? She doesn't seek out information or support on the internet. I wish she would. I think it would help her figure out what questions to ask the doctors.

I realize there is a forum for family and loved ones, but I did not see one specifically related to IBC so I wanted to bring this to you all. Thanks for listening!

Moderators

Hello bestie,

Welcome to Breastcancer.org. We're sorry you have to be here, but very glad you've found us. Here you will find support for your best friend as well as yourself from others who have shared similar concerns.

On our discussion boards there is a Forum for Families and Caregivers of Members with Stage IV Diagnosis. You may want to check that out as well for posts from others who have been through similar experiences.

Sending you and your best friend our warmest regards,

The Mods

edwards750

bestie - what a great friend you are to be there with her during this incredibly difficult time. What does her husband think? 

It's hard to know which way to go on your support - the perpetual optimist or maybe in her case - a realist. The thing is the call is hers to make. If she chooses to live in a fantasy world it's her world to live in. I completely understand your feelings about the harsh reality but maybe deep down she already knows too. We have to hang on to hope otherwise whats the point? 

Sooner or later the reality will defy her fantasy and her condition will become more dire. I don't really like doctors who put expiration dates on our lives because they are only guessing. Granted they are experienced so its not a wild guess but maybe it's not the prudent or ethical topic to discuss at this time. 

She has a young child which makes it more upsetting. Just be there for her and pray for her. 

Keep us posted. 

Diane 

Moderators

There are many people on these forums who have defied the odds and new drugs and treatments that are improving survival rates. 

A positive attitude, with hope is much better than giving up, and having a good friend like you helps too.

It is tough to support your friend but her decisions are hers to make and you can but support her as best you can.

We wish you both the best possible through this trying time.

All our best to your friend, and you.

The Mods

wrenn

Your life is what you think it is. Let her create her own story. 

It is very hard for you but try to go along with it. Hang in there.

RebzAmy

Dear Bestie I'm really sorry to hear about your friend.  I strongly believe that people deal with what they can deal with and when and if the time comes, your friend will come to realise that things may not be as she wishes them to be.  I think that not knowing is sometimes good and the way she's thinking is a protection mechanism and is as much as she can cope with.  Sometimes you hear of people being given a life expectancy following a life threatening illness and they die literally to the day.  It could be that a positive attitude and a feeling of belief can extend life and help your body fight rather than just giving up because you know you're going to die soon at some point.  Nobody knows what will really happen and the fact somebody is living in hope is a good thing and long may that be the case.  Hugs

WinningSoFar

I agree with all the other sisters.  There was a point in my cancer journey when I was close to death and it was touch and go (not cancer related but a perforated bowel).  My friend was terrified for me I learned later.  At the time, she didn't telegraph that to me because she believed if she did, I might just give up and die.  She'd come every day to visit and read me the newspaper--all the little meaningless articles and the ads.  I can't tell you how I looked forward to her visits.  

If you can do it, I'd recommend enjoying her and trying to bring her enjoyment.  After all, none of us can really know what will happen in the future, but if we stay in the moment, that's the best part of life.

Kicks

IF you truly want to support her - do that in a POSITIVE way - not NEGATIVE!  Based on what you wrote - she is doing everything she can to fight and LIVE whatever time she has as is best for HER.  No one (you included) has a guarantee of what tomorrow (or the next second/minute) brings.

It is up to your 'Friend' to decide how she wants/needs to handle and LIVE HER LIFE!  Live your life as you want but you are not all knowing for what all SHOULD do.

If she had done nothing to FIGHT - then encouraging her to get in TX would be a good idea BUT she has been in TX.  The power of POSITIVE thinking is POWERFUL for POSITIVE;  the power of NEGATIVE thinking is just as POWERFUL for NEGATIVE.  My opinion, for what it's worth to,you or,anyone else, IF you can't/won't support someone in THEIR choices, don't be a 'Doomsday Debbbie'!

By the way, I am a 5 yr IBC survivor that thankfully is still NED, though at DX my Drs did not expect me to 'make' it a year.   POWER OF POSITIVE THINKING.  The only 'Negative Nellie' was 'kicked to the curb'.

We are each unique and it is up to us to make our own decisions - no matter what someone else who has never walked a step along what our journney is wants us to do.

ibcmets

Bestie,

I 2nd the opinions here.  I'm a stage IV ibc with bone metastasis from the beginning in 6/09.  We each handle our situations differently.  Denial worked very well for me, though  I did everything the doctors told me.  If I did not have a positive attitude & support through treatment, I would not be here today.  

My onc says even at stage IV, we are treated individually so treatments can be a bit different than others with the same type of cancer.

Hang in there with her and offer your support.

Terri