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.
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.
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 .”
Thank you for filling us in. You are a brave woman.
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!
Please keep us updated when you can. Love and hugs going your way.
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...
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.
Hee! Almost certainly! I love what you said! But I don't want sticking around for 100. Too chicken for that, by far.
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$$ to the end and she said, yup! Beats being a dumb a$$!! ;-)
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.
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.
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!
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.
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!
And, like Houdini, if I get to come back YOU WILL ALL KNOW IT. Hee.
I certainly don’t blame anyone either for any which way they choose to feel. Not at all.
I do think a lot of things are luck of the draw. Bad timing. Wrong time, wrong place.
Some things are out of our control no matter how careful we are. I find it amazing that some people even survive suicide attempts.
I don’t believe in woo woo stuff either. I am amazed at how many people do believe in it.
You say that you don’t want to meet yourself around the corner. I am fascinated by people who believe in reincarnation.
I have a friend who is terrified of bridges. She went to a therapist who does ‘past life regressions’ and was told that she died on the titanic! 😝 So, that’s why she was afraid to travel over water.
I asked my friend how much she paid this so called therapist to hear this stuff! I have no interest in hearing about any ‘past lives’ or my future.
Tarot card readers are a dime a dozen in my area. I have never gone to one. It’s fine if people are getting a reading for entertainment. I don’t believe that there is anyone who can tell the future by reading cards.
If you could come back, Alva, who would you like to haunt first? 😜
Nope, they are not the least bit spoiled. Loved and cared for better then many peoples children but, not the least bit spoiled. My husband on the other hand, well, we tease that you can smell him down the street he is so spoiled. But, so am I.
Personally, I think the ones that die young are the lucky ones, they have accomplished their purpose and get to leave this pest hole. Just my personal opinion. Regardless of color, there is an age of accountability and I believe that ALL who die before that age go straight to the presence of GOD ALMIGHTY.
I can't tell you how often I say "I wish I could be a fly on the wall". Guess if you were a ghost you COULD be. Well, not a fly, but a ghost on the wall.
RR, I just love this little Pest Hole as you call it, but somehow I have managed to usually fall in with the more pleasant pests at best, and at least interesting ones at least. I am not wild about the human species, but love most of the other ones. And I just love a whole ton of things. On FB I even belong to a group that photographs peeling paint, so--you know--I find lots of stuff lots of fun here. I have been just horrifically lucky in my life. And I DO recognize that so many are not.
Yep! There’s always going to be drama somewhere 😆.
Peeling paint group? Okay! LOL 😆
It is really hard not to spoil fur babies. I have spoiled all of ours. Now I spoil my four legged grandchildren.
Also, as an aside, thank you for your discussion on this post/announcement about your professional view of a needle inserted into a mass for a biopsy. I had that done once. It turned out to be a cyst, so no harm and dealt with quickly with no suspense. I wondered later, if it hadn’t been a cyst, was sticking a needle into it just risking cancer spread.
I have followed a lot of breast cancer sites and experiences since my 35 year ago start on this journey.
And as a nurse have followed with a curiosity born of my avocation and my diagnosis.
I could well be wrong (and have been so often). It just is counter intuitive to me for YEARS that we would stick a hollow core needle into a mass that may be (is highly suspicious for, according to the readout) malignancy.
They have done studies on kidney and prostate and found that SEEDING can occur, and indeed right along the needle track. But no stuides on breasts. I suspect that is because a positive on a breast and it is pretty much gone. Removed. Out of there. But that is ALL GUESSWORK.
I faced down my first breast cancer from my gut, doing what made SENSE to me.
That's how I will face this one. I have survived it for 35 years. I am lucky. I am blessed. I am ever so thankful. I am 81 and it's all OK at 81. I could not have been luckier.
EVERY DAY IS GRAVY after what I went through. For me, that is.
And most days have been pretty good eating even before. Even after.
I appreciate your input.
I only ask women to think.
If something is counter intuitive to YOU, then go with your GUT. I think that is true with most of life, quite honestly.
We ask opinions of others. And a lot of times that helps, but more times it can confuse us. What we know in our gut I think, should be honored. Just my humble opinion. Or my "gamble".
However this goes I have not a single thing in my life to kick about, and I won't be kicking. I have been lucky. I have been so amazingly lucky that I would do anything to dice it up and spread my luck everywhere. Just sprinkle it out over the world.
I thank you for your input.
Just as an addendum. I think all here already know this......
I think this is the most AMAZING site. I am completely ADDICTED TO IT.
I came here when my beloved brother, twin in all save the year and date of our births, fell ill with Lewy's dementia. I was so alone, so overwhelmed, and so desperate, and this site LIDTED ME UP. He had made ME his POA when for all my life I had depended upon HIM to save me (and he had). I felt so lost and alone in the forest where he had been Hansel to my Gretel.
I have lost him, but I have gained tremendous insight here. I have gained help. I have learned we ALL fell helpless and alone at some point, and just SAYING IT ALOUD can bring salvation.
It has been an amazing gift, to me, this page. An amazing gift for which I will be forever grateful.
Should you ever have to face down the big C. breast wise, there are WONDERFUL face group sites you can join, and the women are marvelous, full of information, wisdom, and hand holding. I have been a many years long member of one I love.
There's lots of support out here, just a matter of trying to find it, I guess.
Thanks so much for your best wishes, and my heart goes out to you now. My brother died in May of 2020. Miss him still. But was so very lucky to have had the many years we had.
I am hanging in there.
I always defend Kaiser, and so far thinking/hoping to continue to do so, but I will say this system isn't having Marcus Welby managing your case. (I know, I just dated myself real bad. All the young ones are gonna have to research that one). Not even Dr. Kildare, perhaps more remembered by this generation.
I can see now why people hire those specialized RNs to review their case and manage it, phone calls, emails, copies of everything and etc. to the tune of 700.00 an hour. Likely worth every cent. (Kidding as I have no idea what they charge.).
What I have at Kaiser is now FOUR docs all discussing stuff with ONE ANOTHER, but not with ME.
My own doc's last email was to the effect "Well, then why don't YOU call the surgery clinic. Number is on the website" (no it isn't but could get from main).
That without giving me a name of surgeon communicating with her about what they WILL do and what they WILL NOT do given I refused core bx as too invasive, and about my insistence the entire tumor be removed.
So I wrote back to say "Could you give me the name of the surgeon so someone at that clinic knows what I am talking about". Answer was then that she's getting "a lot of emails" (read TOO MANY) from me. And cricket re a name.
Then I get a confusing email from the Breast clinic (who my doc said no longer involved).
So currently don't know who is managing things. Breast Clinic? My Doc? Some nameless surgeon who will call when SHE (at least I know it's a she) has a chance. Anyone? Because we saw the face of a gnarly looking alien on 1/3/24.
I replied to THAT email (breast clinic one) "I feel a bit alone and afraid, mostly because I don't know what one person is managing all this."
Truth is that it isn't one person. That's the problem.
That's why so much falls through the cracks in our current system. So unlike the one where you had a doc and maybe one specialist and your doc followed your case, managed it, even saw you in the hospital.
Meanwhile I just hang in there. 4 to 7 in the morning is my difficult times when I awaken early and can't get back to sleep. Do the awful thinking we do when we are scared. Question myself why I am fighting, and why not just kind of working on what another thread recently called the plan B. Hee hee.
I have a good friend BL now in hospital with severe emphysema. She texted me last night.
That lovely lady had TWO types of cancer, one in each breast at the SAME TIME four years ago if you can imagine.
And yeah, I tell her she cannot continue to smoke. And yeah, she ignores me. Always says she knows and she will stop and that basically shuts me up. She lives in FL. so I don't see her and can't rule with the rod of iron.
I think that 2024 starting with a kind of a bang. So far I am not fond of it.
ON TO COVID, just because. And this is interesting. One of those "so many emails" to my doc was to say "Given that spike protein thing, and my having now an almost certainly malignant tumor growing adjacent to where I had total SEVEN covid shots over last years, should I got the new covid shot". I take all shots L arm because have R mastectomy with removal nodes and shots not as effective without + lymph system.
Her answer may surprise you.
NO.
She didn't give a reason just said it should be/is/will be a yearly booster now. Get it next fall. That assuming I will be around then. Watch the new studies I guess. I have to wonder if they are being done at all.
I’m sorry that you’re having to go through person after person to get answers.
I pray that God gives the right person some wisdom, and that you can speak to them, EASILY, without HASSLE.
Thanks for updating us. We continue to learn from you.