Can we have a forum for "older" people with bc?

Courage doesn't always roar.
Sometimes courage is the quiet voice
at the end of the day, saying,
"I will try again tomorrow."
- Mary Anne Radmacher

Jackie, you touched on something that I've given a lot of thought to throughout the years. You know 23 years ago when I was diagnosed, I soon realized that I could have taken that tumor to 2 different doctors and each would have a different opinion about it.  This terrified me as I dug deeper into the disease.  The more I read and learned about it, the more terrified I became.

I used to cross paths with women with the disease, more recent than not, and they didn't have a clue about any of their types - none. They were happy, hopeful, minimized the event, didn't think it was a death sentence, on and on.

I thought, this might be one area in life where "knowledge is not power", and if it is power, you sure need to know how to handle the discoveries you make along the way.

If I have to take Herceptin, I already know some of the serious side effects and this is even before I even know I'll be getting it. Just how crazy is that?

Maybe it has to do with our personal characters whether we need to learn more or just let it be.

However, in today's world, you need to watch your back and make sure that everybody in charge, including ourselves, is doing right by us.  I will make another post as to what happened to me on the day of the biopsy this past Monday.  It sort of ties into this discussion.

Catherine

This past Monday I went in for my biopsy scheduled for 10 a.m. The nurse gave me the jacket to wear and said I was to have two biopsies. No, I said, there must be some mistake because I'm here for only one; I said there never was any mention of having two procedures done. She then said I would have to speak with the doctor.

I was escorted into the room where the procedure was to take place. This news made my knees weak and I could feel myself coming undone.  It's a good job my Breast Navigator had instructed me to take 1/2 of a low dose Ativan, just to take the edge of as I was pretty scared of the procedure even though I knew what it entailed, let alone this bizarre turn of events.

A couple of minutes later this tiny, comparatively young woman walked in and introduced herself as doctor so and so and went right into why she was going to do two biopsies. She took a piece of paper and with a pencil drew what my scar showed up as on the ultra sound where they top of the scar has this fuzzy area. Then she moved over to the tumor, letting me know that it was only 2cc away from the scar and it had the same fuzzy area similar to the 23 year-old scar. So, now I'm thinking it's a spread, not a primary as my doctor indicated right off the bat who did the surgery 23 years ago.

I said no. Can't remember what she came back with, but I clearly remember saying an emphatic "no"! Do only one biopsy as that's what I'm in here for.

Now this is the interesting part.  "Okay", she says and backs off. No further explanation...nothing. Just simply backs off.

To her credit, she did an amazing job; didn't feel the needle, nor the second one and certainly not the actual specimen gathering. Back in the dressing room I told the nurse how disturbed I was with what just happened, and she said she'd let the doctor know.

Fast forward to Wednesday. We're in for a consult with DH, my Breast Navigator and my surgeon. After everything else was discussed and he, once more, confirming that it was a primary, I told him about the incident. How I was told I needed two biopsies. He smiled and exchanged glanced with my Breast Navigator and the only thing he said was...."she's tiny, isn't she?"

So, while being somewhat unknowledgeable can have its advantages, being your own advocate is very important, as well

I would welcome any feedback from some of you.  Was she being super cautious or does she get paid per biopsy? I don't know what to make of it. I think if she was being super cautious my surgeon would have said just that, instead of "she's tiny, isn't she"!

Catherine

nancydrew8....my doc is an oncology surgeon too. He is also the director of the Breast Center I go to. He is on top of all the latest research and he explains all my options and gives me his recommendation and leaves the final choice up to me. I feel I am good, capable hands.

I am so encouraged that you had 23 years with no cancer....and sorry you've had a new primary, but sounds like you've got a good doc and can look forward to a great outcome.

I'm about to turn 60 next month and would LOVE to get 23 years cancer-free!!!!

p.s. I loved reading Nancy Drew as a child

I totally agree, Jackie. I consider myself to be very blessed in being where I was at the time of my diagnosis and ended up with the best of the best when it came to both my oncologist and my BS. ( I vetted them thru my son's future SIL, who is a well respected pediatric dermatologist). With that confidence, I let them make the decisions they felt best. I came to realize they most probably saved my life by choosing to do chemo before surgery; something I had never heard of doing.

I had enough to deal with day to day without having specifics to focus on. I was not in denial, I brought someone with me to each appt, so if I missed something that was important for me to know, they could re-tell me. I knew it was serious, and large and in more than one part of the breast. I didn't necessarily want to know what stage, and had never heard of onco scores or fish#'s.

The very first time I met my BS, he put his hand on my knee and said " you've got a tough fight ahead of you for the next year or two, but I want you to hear me now- YOU WILL BE FINE!" And I am. I am still grappling with some issues, like swelling under my arms if I don't wear a bra 24/7, and I haven't discussed reconstruction yet, but I will deal with them as my Dr decides what is best.

DD#3 just arrived with my 2 grandchildren so I will finish for now. Have a great Sunday everyone. Our weather is incredible- upper 70's , low 80's, clear skies. Gotta love So Fla at this time of year.

Anne

Hmmmm ....  I wonder if it's "standard protocol" for all BC Surgeons to say "no matter what, you will be FINE!"??  Mine has now told me that on both of my visits w/ him.  And, I haven't even had my surgery yet (that's on Wed.).  I'm struggling w/ depression right now. I guess that is natural w/ any cancer diagnosis, but I "struggled" w/ it even before my dx & now it's worse.  We lost our dog in April 2013 & she was our "child."  If I could just snuggle w/ her & kiss her furry head again, I would feel better.  We have no kids or grandkids (not by choice, because I was not able to have children due to my K-T Syndrome).  The Holidays are a "lonely" time for those of us without family & I struggle with this every year.  I know I must have a positive attitude to beat this cancer, so hope I can "turn myself around" & get somewhat "grounded" before Jim's knee replacement on Dec. 8.  Thanks all of you for being here!!!

Hugs, Maureen

 And this too.

Ah -- to rejoin this discussion.  If you are religious/spiritual you will likely get what I'm saying -- doesn't mean anything is wrong if you don't.  Just means we are all different and hopefully know ourselves better than anyone else -- at least with the things that matter most.

When I was diagnosed -- I had just lost my Ins.  It happened to be time again for my yearly mammogram which had been followed my US's for a couple of years.  When I found out my Insurance was gone --- I called up my PCP at the time ( big tip-off here ) and his nurse, when I told her I had LOST my Ins. and could not keep my appt., let out a gasp. 

Now I did not actually understand this at the time -- I was still trying to take in and understand what having no insurance was going to mean to me.  Later, after my diagnosis I realized that the Nurse and Dr. actually had known for some time that I had cancer, but had never let on.  Then, suddenly, I slipped out of their fingers -- just like that.  So, here I am -- and about three months after this incident, I was reaching for something in the back of my car -- a Blazer actually with the back cargo area.  I open up the top door to pull a box out and the very tip end of the box hit me in the lt. breast, sort of mid-to upper  interior area.  I got a nasty bruise out of it.  Funny thing -- I knew at my age that bruise would be with me a little longer.  Two months or so later, with almost no change -- I knew something was really not right -- and that I had to figure out what to do about it with no insurance, and no money to investigate this problem.  After a week of phone calls and door being close in my face, I happened to think about the fact that I had been in the service.

I made a couple more phone calls, was directed where I needed to go to apply - and before too long I not only had a Veteran's I.D. card, I was deep in the middle of every test it seemed known to man.    Once they had a 'strong' idea of what was going on with me they farmed me out to the Women's Breast Center and to the care of my fantastic breast surgeon, Dr Marsha Ryan.  I was terrified, but by the time I saw her for the first time, I knew what she was going to tell me.

My husband and I sat in her office/exam room both of us braced -- stiff as boards, almost afraid to take in too much of a breath for fear of shattering.  Dr. Ryan walked in, and the room filled immediately with a sense of wellness, of comfort, of competency and almost seemed as though a warmth had entered as well, and we instantly knew that we were in the presence of a Dr. with the 'healer's aura'.  Every thing that had happened up to that point took place ( or as I like to say -- conspired with the Universe  ) aligned in an order --- from a Dr. who knew I had cancer but had not told me, and from a time when I lost Ins. and had nothing, and from a bruise that made me KNOW I needed to do something, somewhere,  and from there being sent out of the V.A. and into  a clinic where a truly exceptional Dr. awaited me and from whom I would not only receive healing vibrations immediately but would know what I was feeling. 

Some really won't get that and believe me, that is ok.  We are all where we are for reasons often un-known to us.  So if you don't understand why I felt total and absolute trust in Dr. Ryan, and why I did not actually need huge amts. of information -- that is perfectly all right.  There were many steps to get through along the way, but once Dr. Ryan walked in --- everything that happened up to that time instantly was revealed -- and the comfort and safety she brought with her just resonated completely through me and was so palpable that there was no mistaking it for me.  The fact that my Dh felt it right along with me just enhanced the positive emanation's and gave me all the certainty it was possible to have.

In any case, for me personally, I think fighting through my chemo and rads became easier (  I had the information I truly needed )  when I did not end up with so much information that it might have weighed heavily while I fought through some of my chemo issues which were rugged for me, and 7 full weeks of radiation which meant that I had to leave home and stay in a motel all week, and come home on the week-ends.  If I had realized everything I was involved with ( I knew from the instant my surgeon walked in I was going to be in the BEST of hands and likely be fine ) and all of the ramifications and possibilities, I think my great outcome would have been a whole lot more difficult than it was and  I did have a fair number of rugged parts to get through. 

Some people need to know more -- have to advocate for themselves -- I'm not in any way against that at all.  I think you should.  Had I sensed even the slightest thing NOT feeling right I'd have been "singing" loud and clear about straightening it out to my satisfaction.  I just feel I was led ( maybe I should say had my insurance rug pulled out from under me and pushed head-long ) into a situation where the end result of it all was that exactly what I needed was set up and provided and it was left to me as to whether to accept the challenge of knowing a genuine blessing and gift from the Universe when it/she arrived dressed in a Dr.'s coat. I accepted and have not one iota of regret.  That is not right for everyone, but it was for me. 

It is gently snowing again outside.  Weather report said from one to three inches.  I'm starting to think -- is it going to be more.  Sure looks like it could be.  I'll see you all later.  Going to look now for other entries to this very interesting topic.

Blessings,

Jackie

Jackie, thank you for sharing your story; it's very inspirational. 

 "I did not understand your surgeon's reply."

Sally my take on the surgeon jumping right in and mentioning her size I interpreted that as avoidance. Certainly he wasn't going to bad mouth her, a colleague in the same facility, so that was the best way he could diffuse the incident.

Certainly he could have defended her by saying....well, she's just being super careful and she has done that with other biopsy patients, etc. But he offered noting but that remark about her size. 

I thought maybe I was misreading his response, but DH felt that same way, as well.

Also, the surgeon could have said....let me consult with her and discuss what she saw and if necessary, we'll have you back in again.

Catherine

"Some really won't get that and believe me, that is ok."

I get that, Jackie. Here's how I interpret the events.

Had you had insurance you would have been in the hands of an unethical health provider (who Lord knows how he can put his head down each night, along with his sidekick, the nurse) and can't say where that would have lead you.

It was fortuitous that you had no insurance and even more that the bloody door gave you that bruise. A guardian angel sent you that knowledge that you could get insurance having been a Veteran which brought you to Dr. Ryan's door.

You sure took the long way to get to her, but you did.

I truly believe in my heart of hearts that we have angels assigned to us who watch over us.

I'll give you a quick tale:  6 months ago I had my annual with my regular doctor who recommended I cut down on my BP meds because my BP was normal. So he prescribed another, milder medication. Okay, I thought, reveling in the fact that I was healthy and maybe soon down the line I can phase out this med, as well.

Three nights later, I hear loud screaming in my dream:  Wake up, Catherine...wake up Catherine. I sat up and my heart was actually flipping over onto itself. Literally somersaulting. I woke my DH up and said...get up, I think I'm in trouble and you might have to take me in. Well, I sat there taking deep breaths and it settled down a bit.

The next day I started reading about this particular medication and clearly what it did was almost completely deplete the Potassium from my system when made my heart to funky stuff. I went back on the old med. 

So, who was that screaming in my dream to wake up?  So, yes, I believe we are watched.

Catherine

My tale of the universe aligning itself when I needed. My Blue Cross policy was one that shut down with the new Affordable Care Act. When I ran the numbers it looked like I'd qualify for the federal tax credit, which meant I had to apply for a policy through my state market on line, and we all remember what a disaster that was. It took weeks, my online application never did get processed, and finally I got a response from my paper application that said they thought I might qualify for the new expanded Medicaid and that I needed to apply for that. I filled all those forms out, again waiting weeks, thinking I'd be denied and would then have to hustle and sign up for an insurance policy. It wasn't until 9 days before the final deadline that I got the call that I qualified for Medicaid. I still don't understand it, but I've not had to pay a $560 monthly insurance premium this whole year, and Medicaid has covered all my cancer bills, even the genetics testing. The only bill I've had to pay was the $2/visit copay to see the doctors, and the $120 fee for the dietician consult. I did notice in the fine print that when I die they will take the money back out of my estate, but hopefully that won't be for another 20 or 30 years, and I don't have any kids so it's not like anyone is losing their inheritance. And I guess if I use up all my money that will be that.

Husband, Daughter, and I just returned home from a day trip to the Vermont Country Store to get X-mas stocking stuffers!

BBL

Just cold, we filled up on so many different samples of goodies! I came home with X-mas cards, lilac hand cut soap, Tired Old Ass Soak, and candy mega buttons.

Thanks everybody for the warm welcome. I ended up having a great time with my grandson this weekend and have a positive attitude going into next week. I have a new 6 week old little g randdaughter . You forget how small they are when born. They are all a blessing! god bless all