Trying to make sense of this

tricia keegan · 08-16-2008, 01:06 PM

Hi all, I'd be interested to hear any comments on this, I have a friend diagnosed a year after me with a far better prognosis..no pos lymph nodes, sml tumour, hormone pos and her2 negative. Between the two of us I would have thought I'd be the one to recurr but sadly just before last Christmas she was diagnosed with a huge spine tumour and mets to bone after chemo /hormone therapy and rads.She was told the chemo simply did'nt work.
She underwent major surgery but only 3/4 of the tumour could be removed so she's been in chemo since wearing a back brace and because of nerve damage during the op has had to have a catheter and constant care.
I just heard yesterday after recent scans that the chemo once again has not worked. The cancer has progressed in bones and to the liver and her Dr's have agreed there is no more they can do so have called in hospice home help.
She was initially going for a second opinion but has now decided against this and is in a wheelchair.
The hospice Dr says the end will be sooner rather than later.

I've lost a few friends to this disease but this has me stumped. How could this happen???
With what was not a terribly aggresive type of cancer in '06 to this??
I suppose I'm just trying to put a label on this to help me process the info/news and would appreciate any thoughts. Thanks in advance for any replies..

Becky · 08-16-2008, 01:51 PM

Sometimes things cannot be explained because no one's tumor can be completely analyzed for all the potential tumor markers yet. Each of us and our cancers are snowflakes - individual and different from each other. Even those of us here on this board - some are triple positive, some hormone negative (or only positive for one hormone or the other). But still different because none of us know that we might be positive for Her1 or IGR or something that no one has heard of yet.

I understand your feelings because when I was in active treatment there were 4 of us in our late 30s to early 40s having chemo. Weirdly, 3 of us were Her2+ (one triple positive, one hormone negative and me (only ER+)). All of us had at least one node involved. Then there was another woman who had no nodes, was Her2 neg, highly ER+/PR+ and a 2cm tumor. She recurred last May (15 months ago) to the sternum and lungs. She is doing ok but none the less... I recently bumped into the girl who was Her2+ and hormone positive. She too is doing well as is the Her2+ but hormone neg girl (I say "girl" because they are still in their 30's). We both remarked that if any of the 4 of us recurred, we never thought it would be the one would did. Perhaps it was the Herceptin as we were all 3 back in the chemo room 4 months later as soon as Herceptin was available and took it "later" after chemo was done. We will never know and neither will you. It is a nasty disease and some of us get dealt a nastier deck of cards. I am sorry this happened to your friend and I will be thinking about you.

tricia keegan · 08-16-2008, 02:04 PM

Thanks Becky,
I knew there's no answer to this but am having trouble coming to terms with it. Out of all the people I know I did'nt think this lady would recurr like this.
It's hard enough coming to terms with the death of a friend but in such circumstance's it's even harder to find a reason.
Thanks for your reply and I'm glad I'm not the only one who finds this puzzling. There's so much we don't know....and I'm tired of losing friends to this disease.

Mary Anne in TX · 08-16-2008, 02:21 PM

Hi Tricia! I have done the same as you several times as I see those who I thought would do better and did not. But I so agree with Becky. there is so much we don't yet know. And I have begun to believe that it is so important how our bodies deal with the treatment and what treatment we are given. So much is choosing the best choice but with no real answer. I took a ton of chemo to hopefully cover more bases, but I also know that if it worked, I'm good, but if not, it may come back. We just don't have the answers. I also think that some of us get more supervized care than others. Some of our doctors are as diligent as we are and check out every little thing, while others go with other plans.
I don't have an answer, but I know it makes me really mad to keep losing great girl friends! I just keep reading and trying to be a good steward of this 'ol body of mine. And most of all, I'm learning how to tell those I care about that I do!
God bless you as you walk through the journey of finding peace about this bc "thing" we deal with. I, like so many others, am trying to find life without always thinking about bc. Much love, ma

notamrnpsn · 08-16-2008, 03:04 PM

I too have lost some very good friends in the past six months. Three of them in fact. They were such happy go lucky women, who just loved being with there friends and family. It really makes me sit back and wonder at times about this horrible disease. If I let myself think about it too much I scare the hell out of myself. Then I think of my friends who have there wings and they tell me to keep fighting. I miss them all so much.

One day ladies there will be a cure. Hugs and Blessings, Jeanette

tricia keegan · 08-17-2008, 10:27 AM

Thanks for your replies Mary Anne & Jeanette, I know there are no answer's to this as yet and like all of us I just get weary of losing friends to this disease.
I think in a way it's all the more shocking when they appear to have a "good" prognosis and are doing fairly well.
Just another mystery with this sneaky disease!

Sheila · 08-17-2008, 12:29 PM

Tricia
I wonder just like you...I always say, this disease has no rhyme or reason...it seems to pick and choose...all the more reason we need to be aware of any changes...I was one of the ones who they thought would not recur, and i did....it is such a crapshoot, and makes it so hard when we lose a close friend to it....this has been a hard year on all of us, I have lost 2 close friends, and too many here, that although I never met them, they were very dear friends....funny how we "know" each other so well without most of us ever meeting.

Pam P · 08-17-2008, 05:53 PM

Tricia - I'm glad you expressed these feelings and questions. They are ofen on my mind too. As you and others have stated, there is no logic, reason, or pattern. Period. With that, if the lesson is acceptance, I'm having a hard time learning or accepting.

goops · 08-17-2008, 05:56 PM

I am so sorry to hear about your friend, she will be in my prayers.

tricia keegan · 08-18-2008, 11:48 AM

Thanks for replying Sheila, Pam & Goops,

I posted this before I saw the sad news on Vanessa and it just seems like such a heartbreak to lose so many couragous women to this.
It seems too I'm not the only one to have felt this way, for me, it was the first time to experience someone doing so well and within weeks to have hospice care. Miracles still happen so I just keep hoping and praying for her.
Sheila it must have been so tough for you to recurr as I knew I did'nt have the best prognosis from day one so was half expecting the other shoe to drop any time!
I'm glad to see you're doing well despite all you've had to cope with.

StephN · 08-18-2008, 12:09 PM

I am very sorry to hear of yet another BC sister battling for her life.
Tricia's question brings up something that has been batted around here for several years. That is "WHAT IS A GOOD PROGNOSIS?"

Mine was supposed to be pretty fair, but I was revisited with aggressive tumors in a few short months after rads. It came as a complete shock to the infusion room nurses when I showed up for a new tough round of treatment. They all thought I had done so well before! Outward appearances mean NOTHING for this disease.

From that time on, I knew that there was NO WAY to predict or trust the numbers. My med onc would not even really give me numbers - just said that the initial treatment I was getting would give me the best chance to survive of the choices available at that time.

My experience over the years in taking part in this forum and knowing other BC warriors has only reinforced my opinion that there is NO WAY to trust this disease no matter what the early indications may look like.

If this disease wants to advance, it can and WILL find a way. Scary, sad, but true.

Those of us here who were fortunate enough to have the Herceptin early really DO have an edge now, as Becky pointed out. Keep an angel with you at all times!

schoolteacher · 08-19-2008, 02:00 PM

Tricia,

I am so sorry to hear about your friend. I will pray for her.

Amelia

Jean · 08-19-2008, 08:56 PM

Tricia,
We can all relate to your disturbance.
I am sorry about your friend. This disease is so unpredictable. What Steph and Becky said is what
I have felt - that is the main reason I was as aggressive
as I could be. There are still many unanswered questions and each person reacts differently to the
treatments.

There is so much that is a mystery.

juanita · 08-21-2008, 04:17 PM

So sorry to hear about your friend. I'll add my prayers for you and her family.

tricia keegan · 08-21-2008, 05:28 PM

Thank you friends, sadly my friend passed yesterday.
I'm feeling pretty sad this evening but wanted to say thank you again for your replies and comments to this thread.
Seems like there really are no answers...

PinkGirl · 08-21-2008, 06:17 PM

Tricia,
I am so sorry to hear of your friend's passing. We have all endured
so much this year.

This is so sad.

Sheila · 08-21-2008, 06:21 PM

Tricia
So sorry to hear about your friend....i know that loss well, 2 in 2 years and countless from Her2support....sending a big hug and love to you across the world to Ireland

schoolteacher · 08-22-2008, 07:11 AM

Tricia,

I am so sorry to hear about your friend.

Amelia

tricia keegan · 08-22-2008, 01:49 PM

Thanks for your thoughts again Sheila, Amelia and Pinkgirl, as Sheila says there really have been far too many losses this year from this disease..

juanita · 08-23-2008, 06:58 PM

I'm sorry to hear about your friend. It's always so depressing when we lose another one to this awful disease.