I have outed myself on SP's posting about her Sister's current problems, so may as well give you all the facts as they stand. Had intended to wait till I knew more, but alas...
As most of you know I am 81 and a "uni" since cancer took my left breast away 35 years ago. At that time no one, including the mammo machine could find the tumor, but adenocarcinoma of the breast was found in an "olive pit" (without the martini) in the underarm (Docs at the time had told me it was nothing but lymph nodes draining something and I had said "I don't care; I want it out."
On biopsy it was two infected lymph nodes fused together. After mastectomy all other nodes were clear. So that was my 1988 (when Cher did Moonstruck, the movie that got me through it all).
I did chemo at that time, and refused radiation. Have walked the world an Amazon since. The ORIGINAL kind.
Well, looks like "it's baaacccckkkk". Found a lump in the L breast a few weeks before Christmas. Scheduled the testing to start just after the new year. To bring you up to date a "very suspicious" lump shows clearly on Mammograms and on ultrasound. I would stake a lot of money on it's being a clone of the Alien. It's irregular to palpation.
So here's the plan.
Kaiser wants a hollow core needle biopsy. I won't do it. I admit to a bit of PTSD re former torture chamber activities, but real reason is that new studies on "seeding" via punching holes in tumors and allowing the contents to leak into your tissue and spread are concerning for me (the only studies are on prostate needle biopsies; go figure).
It is to me counter-intuitive to take an encapsulated malignancy and stick hollow core vacuum needles into it and allow its contents to hemorrhage into your breast. Thence through your system via nodes. While you wait patiently for the lab to tell you what you pretty much already know.
Those of you who have had the procedure and the concomitant "bruising and swelling" may know what I mean.
I have requested a mastectomy on the left, instead, no matter WHAT this mass tests out to be. I don't trust a bit of needlework to say it's OK, and leave it there. I want it off, just as I wanted those nodes OUT.
Medicare doesn't cover mastectomy without biopsy for cancer dx. first; won't cover the removal of breast prophylactically I am told. Though there are some laws about insurance covering a woman with a history of mastectomy on one side --regarding a right to symmetry--they don't pertain to medicare. I may be looking at self-pay, which is OK.
So this is currently the beginning of a bit of a skermish with Kaiser. Hopefully not a war. Because overall I find them quite kind.
I don't intend, positve or negative, to do any chemo or radiation. I am 81 and I am WELL READY, and I have worked hard for the passage of right to die Compassion and Choice laws for my state. I would make good use of them, and all the other GOOD DRUGS and do so until "the end of the saga". Though with the GOOD DRUGS heaven knows what my AC posts would be?
I am not scared (other than of needles that are hollow core punches, hee hee). I am OK. I am thrilled with 35 years cancer free after my first fight. My daughter was only just raised my first bout, and I was only 1 year in my relationship with my current partner.
My family is fully informed and fully on board with my choices. I am having heavy metal armor forged to do battle with the medical system, and a part of me loves to fight (as you are aware).
I want none to worry. We ALL have our "stuff". We all know what it is to walk the walk.
I will update you WHEN I know WHAT I know, and what steps I will take.
Always remember what I always tell folks on AC. No one writes the obituary for an 81 year old and hears "Oh dear, died soooo young!!!"
Tombstone epitaphs gladly accepted. But my latest choice is "Does this mean I don't get to watch The Bishops Wife next Christmas". Only kidding. Not having a tombstone, much as I love them.
And, like Houdini, if I get to come back YOU WILL ALL KNOW IT. Hee.
You make GOOD sense. I get that Doctors want to see what they are dealing with, but poking holes in aliens does NOT make sense to me either.
I had a biopsy at 22 & the Doc said if it looked sus he'd just take the lump there & then instead. I said do it. It was done.
I'll be checking in & hope hope hope the alien is evicted quick smart!
I think regardless of race or faith, that it’s fate. I don’t think faith has a lot to do with it.
I received a phone call from my younger brother who told me that he had a fight on the plane that crashed into the World Trade Center on 9/11.
He had no reason not to get onto the plane but he had a feeling that he shouldn’t get on the plane and he didn’t.
He traveled all the time without any fear or phobias. He was in shock like the rest of the world when he saw the outcome of that flight. He felt extremely fortunate that he didn’t get on the plane that day.
I feel his number wasn’t up at that time.
Another time, when I was robbed at gunpoint, the robber told me that he would kill me. I was 18 and literally begged for my life. He got the money but spared my life. It wasn’t my time to go.
Same thing when my car spun around on interstate and I was facing oncoming traffic at high speed. The car was spinning out of control and then suddenly stopped. I ended up not having a scratch on me. Believe me when I say, I thought I would die but I absolutely feel that it wasn’t my time to go.
Yet, I know a family in my neighborhood who accidentally ran over their three year old grandson in their driveway. He died from his injuries. They were practicing Christians. I don’t think anyone’s faith will save them or others no matter how much they pray if their numbers are up. Just my thoughts on it.
And your number is up when you're dead.........
Because--hee hee--you're dead.
So your number's clearly up.
As to that being fore-ordained?
Those with "faith" sometimes support that theory.
As a science based RN I look at statistics a lot. African-Americans die at a much higher rate than Causcasians of cancer, of covid and of even maternal and infant mortality. Of high blood pressure. Pretty much of everything. If I extrapolate out that their numbers just "came up" and that some "god" ordained it so, then I must say that he either LOVES AM people much more and calls them to him early, or that he hates them and chooses to deprive them of long life because...................
well, who could guess his reasons, we are told.
But, who knows.
Don't mean it to be a religious discussion really, or a mask or covid discussion, but that's OK, too!
My crazy cousin had, “I told you I was sick!” inscribed on his tombstone. I giggle every time I walk past it. He died in his 90’s.
I also feel like when our number is up, that’s all folks! Some deaths may be prevented but many are not.
None of us know exactly when the end will come. Or know how it will happen. I don’t think that I would want to know the day and time beforehand.
I have heard experienced nurses say that they have seen patients who they surely thought would die and their patients ended up making a complete recovery. Or that they have cared for patients that everything looked good and they took a sudden turn for the worst and died suddenly.
I had thought you would nominate something like: "I TOLD her to get tested". (hee hee)
Thanks for the good wishes. We've had our moments, but I like to think we have--as I always say--EMBRACED them!
I would imagine there's not a single subject on which we do not disagree! But we at least agree to disagree. AND we both love animals.
I know that those of faith believe we die in our designated time-to-do-so, and not "too early" or "too late". But I, as someone caring for young innocents lost to leukemia and elders in torment, and their families as well, never bought THAT one for a single second. Or much else about faith. Alas. Missing the gene for it.
Alva, when our number is called, age doesn't matter. We lost our youngest daughter at 42 to a prescription drug interaction. Was she too young? We believe that it was her time. I believe the same for everyone, when it is our time, we go.
I pray that whatever is your lot, that you don't suffer and that you continue to have a good quality of life until it is over, however long that may be. You have the right attitude about cancer and that is the biggest part of the battle, imo.
Here lies Alva, smart a$$ to the end and she said, yup! Beats being a dumb a$$!! ;-)
Hee! Almost certainly! I love what you said! But I don't want sticking around for 100. Too chicken for that, by far.
A huge fan, yes, of Final Exit.
Have had my VSED handbook for a WHILE now.
Am collecting tombstone epitaphs (despite choosing cremation) and know all the BEST ways.
Leave it to an RN! They all "go there" and often. hee hee.
Thank you for your best wishes.
Kaiser can get creative around their coding and get something past for coverage, don't fear, if they CHOOSE to.
Am not worried about the process. It is a simple working of the steps.
How much cooperation can you expect from your doctor fighting with Medicare? Will they support a prophylactic mastectomy?
https://www.helpadvisor.com/medicare/does-medicare-cover-mastectomy
Thank for fighting for the California End Of Life Options Act, I did too and it's a very important option.
For you and others you may not have the same options, please don't forget there is also another option to deal with end of life on your own terms. Final Exit Network-
https://finalexitnetwork.org/services/exit-guide-service-and-end-of-life-options/
I'm also not a believer and had a wonderful friend who always offered to talk to "The Big Guy" for me. I never said no and I'm still here so...
Please keep us updated when you can. Love and hugs going your way.
I left the house on my way to a test the other day, then turned and came back in the door and did this soliloquy (Shakespeare version) for my partner:
“A coward dies a thousand times before his death, but the valiant taste of death but once."
(Homer said it first--and shortest--but not sweetest).
Then I giggled (translate "I am scared to death"), closed the door, and marched forward.
I worry things to DEATH so that by the time I go through them they seem comparitively easy.
I'm the kind who is so anxious out in the world that I actually LOOK calm.
The proverbial rabbit frozen in the headlights.
I see humor in the human experience, and that gets me through. And being an old RN,
I've no fear of death. But I SURE do fear its preamble.
I've a very lucky life. Nothing to kick about!
I recall my beloved bro, who never told me he was afraid until the last days of his life, when he begged me to get him out of the hospital and home on hospice. NEVER. Always the "strong-big- brother-with "I am here and if I am here you are always safe".
But once he had to go for an ear surgery. And we were at Uni of California hospital, and as we sat quietly waiting, he turned to me, smiled, shrugged his shoulders and said "I am just a tiny bit concerned".
I burst out laughing and said "Translate: SCARED TO DEATH" and we got the giggles as so often we did in our lives. We were so alike. I can always hear my mom saying "What ARE you two GIGGLING about!!".
Being a coward I have long wondered at "heroes". Just pick one: let's say Sgt. York who took out those nests of machine guns? I always wonder what makes the hero act. Clearly there's no time to think it all out; they just act. For me, I think this thought would get into my head "Well, this is nasty; not many of us are walking away from THIS. Let's get this OVER WITH". And with that they just kind of run into the guns". A sort of suicide to, get it over with. And then, in the case of Sgt York, or some two or three at Gallipoli who survived it, they got hailed heroes--"brave".
I Just wonder. Always up in my attic of a head moving stuff around and wondering amidst the cobwebs. The mind is such a fascination. As is ALL OF LIFE. As is--even--illness. Not always a PLEASANT fascination, but a fascination none-the-less.
Oliver Sacks spent a lifetime fascinated by the impaired mind, ended convinced that they have a whole entire world-- just not OUR world.
Anyway.....................philosophical Sunday. And, for San Francisco, quite cold!
Thank you for filling us in. You are a brave woman.
I had a neighbor in his upper 90’s .
Whenever I saw him outside we would talk alittle and he always said good bye the same way .
” Maybe we will speak again , maybe we won’t , at my age I don’t buy green bananas .”
I love the no peer pressure thing!
I would say one of the most awful things about the big C is all the advice. Often think of that, of course, as I am ALWAYS GIVING ADVICE, hee hee.
You being a retired nurse, I always read what you had to say. I even learned some things at my age! I like your candor, your honesty, and your wisdom (not to forget humor). I would always look for your response because often there was nothing more to say. I’ve often thought before responding to a post, “What would Alva do?”. (Although we do disagree about “therapeutic fibbing”.). At 81 we’ve been around the block, and like you, I’ve expressed my wishes to my kids to the extent of writing my own obit!
So I’m sorry the big C has crept up on you again, and I admire your resolve and strength in not wanting to be a pin cushion. On behalf of all the others on this forum, please continue to offer your two cents because it’s worth more than gold.
In closing, When a 104 year old lady was asked what the best thing was about being 104, she replied, “No peer pressure”.
Best of luck, Alva.
Thinking of you today. Wishing you the very best as you continue to explore what to do next.
Can add your hollow-core bx story to my folder!
We don't yet know how much they spread cancer as no one does the studies on WOMEN. Go figure. They work well for the docs. They have done studies on men for prostate hollow core, and yes, they can spread cancer cells and right along the needle track as you said.
Worse, in a good number of women there is bruising, even hemorrhage of blood into breast, so all that tumor material (and this IS it, as it's the irregular feel, and etc) simply empties right into the breast. And from there, who knows to where.
To me it is counter-intuitive to do such a thing.
When I posited my theory, in response one doc said "Oh, the cancer doesn't spread because cancer cells like to 'stick together'".
I wanted to say I never heard anything so stupid from someone who graduated medical school but I have, so instead I said "Really? Gee! Funny how they end up trickling into brain, bone and lung, and lymph then, isn't it".
Happily that wasn't any doc here now making decisions on whether I die now or later, ha ha.
And I soooo agree on humor!
I swear I will die laughing, and I love those who MAKE ME LAUGH.
When I had my first biopsy my roommate Casey and my then-new-love, N. and other friends were at my house. Casey said "I'll drive to work (we were nurses same ward) and take you home". My friend Roger said "No, I have the car that day. I will get her". My new love, N. said "don't be silly; I am going with her and bringing her home".
And Roger piped in with "Oh, H---, We'll ALL drive and we will bring her home with the cars in a row, the headlights on, and driving slow".
Meaning of course, the proverbial funeral procession.
I thought I would laugh until I pee-ed, and that was 35 years ago when the bladder functioned so much better!
It depends on the 81 year old Alva. Based on your posts and insights I think people might just say that 81 was way too young for you to go.
Sorry to hear of this news . (((Hugs)))
Do it your way ! I’ve often thought how needle biopsy could spread disease.
My GM had a breast removed at about your age. No radiation or chemo. She did great. You will too!