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 enumerate all the reasons the surgeon gave me for no mastectomy and yes lumpectomy below CX--look for my January 25 update so I won't bore everyone again.
In short the surgeon would have done exactly what I wanted, asked I listen to what she would suggest for herself or for her Mom (interestingly has a genetic component and her family riddled with breast cancer because of it). Then left decision to me.
Will be going back if any other further problems show, or if margins not clear, for the mastectomy, but am starting with wide margins, lumpectomy, no nodes removed (I won't be doing radiation or chemo no matter histology at 81, so no nodes needed.)
The date is the 21st. Day after my daughter's 62nd BD.
Other than Kaiser being on my tail every second now with calls re this, calls re that, and calls re everything else from do I want genetic testing to what meditation tapes are free I am doing OK and on I go.
I am so sorry Ma Kaiser ever got hold of my smart phone number, tee hee! She is a total pest. "Drink this electrolyte drink 2 hours before admission" "do this and do that and do the other". Pre op phone call is today. EKG was last week. And Ma is running me ragged.
Every time I sink down into Kinsey Millhone and G is for Gumshoe (My thanks to the much beloved late Sue Grafton for Kinsey and my second run at her) there is Ma Kaiser on the phone. It's like having a real Ma. Kinda.
Making a note of your surgery date, so I don’t forget THAT, as well!
I’m glad that Kaiser is taking care of you! 😘
Who remembers coddled eggs?
Thanks CX. I will be a blithering basket case day of surgery. Likely will have to be dragged in kicking and screaming. But once there I always end wondering what all my fuss was about, hee hee.
I hope that doctor is rotting in a very warm place now, and it sickens me that women STILL are given the short shrift in medical care.
Sorry for that graphic piece of non-helpful information, but the date of your first bout just took me straight back to her experience.
I'll just say that Mom was sent home after her infection cleared up with no chemo or radiation. I taught her how to stuff her bra, since she'd never had that problem before, and as a 34A, I lived with it on a daily basis. She went on about her life and eventually forgot the whole thing.
She was 59 years old when she had that surgery with no follow-up other than years of Tamoxifen, but she died of CHF in 2021 at age 92, NOT from breast cancer.
I wish the same for you -- death from extreme old age. Cancer can stuff it.
OH, NONE of you want to hear my litany about reconstruction. But I never worry about what you WANT, do I?
I was an RN 35 years ago first bout of cancer and should have KNOW better.
The breast had to go (after a ton of argument before the tumor board) because the tumor couldn't be found. Given it was already in two nodes they knew it was there SOMEwhere. So then down to mastectomy. And--"Hey kid, you want reconstruction, right? You are young".
I said yes. LORDY. I plead I was in a new relationship one year (yeah, that old man is still here 36 years later; I guess he's a "leg man"), and thought I should.
Let me tell you that THING I called the Frankenbreast was no breast (I hear they are better at this stuff?). With the years it got more and more problematic. With my labeling it ever more nasty things (the Picasso on my chest) it continued to migrate about until it was kind of a Babe Ruth baseball without the autograph located just below my chin on the right side. When it began to pull and tear muscles so my chest was black and blue I finally had to go the explant route.
You know me. Anything to avoid a doc! I wish I hadn't waited.
I was so relieved to be shed of that thing that I cried.
I wish now I had gone flat at the time. I didn't. Live and learn. I was young. I also figured it the breast cancer wanted to go somewhere else, I had a "spare" for it. And while it took it more than three decades, looks like that's what it did unless it's a new primary, which they feel likely.
And what's right for one isn't always for others. For people facing options like this I sure recommend the facebook group Flat and Fabulous. What a great bunch of women. What heart they all have. And so much information. So many choices.
Thank you so much for sharing. I really appreciate that info.
The Bible talks about older women teaching younger women. Thank you for always sharing your wisdom with us. Such a blessing you are!
My younger brother’s ex wife went for her very first mammogram at age 40. There wasn’t any history of breast cancer in her family.
She didn’t hear back from the hospital about the outcome of her mammogram.
My SIL very naive and thought that ‘no news’ meant that everything was fine.
One morning while showering, she discovered a lump. Only then, did she think to call and check on her mammogram results. They sent her a letter which stated that she had a malignancy.
She was taking hormones that caused her cancer to progress at a faster rate. She was diagnosed with stage 4, went through chemotherapy and bone marrow transplant.
She had a double mastectomy and against her doctor’s recommendation, she had reconstructive surgery at the same time. I believe that her surgery was around 10 hours long!
She said that she didn’t want to wake up without breasts. Later on, she had nipples tattooed on her breasts. She was strikingly beautiful and very vain.
Amazingly, she endured everything better than anyone anticipated. Once, I said to her that I was concerned about her and she commented back to me, “Don’t worry about me. I am too mean to die!” She was mean but truthful!
She ended up suing the hospital. She had two daughters. My brother divorced her and she had an excellent lawyer and won her suit because they failed to notify her of her results. She settled for a little over a million dollars.
She was a heavy smoker since she was a teenager and ended up dying from lung cancer. She would not stop smoking!
She smoked cigarettes for both of her pregnancies. It’s amazing that my nieces were born without any health issues.
Her children were young when she died. It is heartbreaking to know that she survived her breast cancer against all odds but refused to stop smoking.
The one lesson that everyone should learn from my SIL’s case is that no one should assume that their mammogram results are normal if they don’t hear back from the hospital.
It is our responsibility to call for test results if they aren’t forwarded to us by mail or phone. Occasionally, something will slip through the cracks and it could be serious.
I think that my SIL felt that she was invincible and that she would never get lung cancer from smoking.
She was also mentally unstable. She had bipolar disorder and wouldn’t take meds, which is what led to my brother filing for divorce.
As always, Alva I wish you the very best.
Things to keep you amused or calm - maybe old Red Skelton movies, Victor Borge and his attempts to play piano with the sheet music upside down, or three stooges routines?
You know we all love you!
😇
I am more a true crime junkie. Or NOT true crime, so for me it is Kinsey Millhone, Sue Grafton's 1980 P.I. and those wonderful A is for Alibi, B is for Burglar, etc books. I sink into another time where she drives her VW bug everywhere, has one little black dress, and people still smoked, even in hospitals. I am currently on H is for Homicide.
I didn't like Red or Victor, interestingly enough or even Bob Hope. More a Smother's Brothers kind of gal.
On to prayers. I am an atheist, and have been all my life. Not a CHOICE, I just am not a believer. Missing the gene. While I love old cathedrals all over the world, Brother Cadfyal, Hymms of all kinds, smudging of sage and reading religious texts, and so on, I never had a second's belief in any faith of every kind. Doesn't stop me from reading my Crow Tarot cards (which say just about whatever you WANT them to say, hee hee--likely why I like them so much).
But your putting in a word with YOUR God? Great! I appreciate your loving thoughts however they are expressed, and it is wonderfully kind of you. All thoughts and all prayer accepted.
You know, if you read any of my posts, that I have been this route before. And as an old RN I kind of know what to expect. And as an old ANYTHING I know a bit about how all this goes. Doesn't mean I don't shake like a leaf on D-day. But that's called normal, I think.
I am hoping that the anesthesiologist is a good one and I don't waken more dotty than I already am. After my first few post op posts y'all can let me know.
Thanks for your caring heart. Everyone here has been so very kind and it does honestly make a huge difference for those of us facing down the grim reaper lurking round every corner (I got stuff to SAY to him, don't you know?).
If you have a friend on here who has your email address, perhaps you could ask your gentleman to send a quick email after your surgery, so that that person could update us?
Just a suggestion. ◡̈
God's got this and you!
I should be home in the afternoon of 21st between 2 pm and 5 pm, but I don't know that I will turn on the computer. I think I will be leaving it off for the day.
My partner will have his hands full with the family, so I will leave the 21st free.
Now, if you don't hear from me on the SECOND day, on the 22nd?
Ha ha, time to start praying a bit HARDER.
My love our to you. But you know, 81 falls into the anything can happen realm, and it would be LIKE ME to leave you guessing.
(Do know that my DD has instructions of what to shut down in terms of FB and AC in my DEATH BOOK decorated with skeletons. She has "notification instructions" for any social media sites. But could take her a while to get to it if I so South so to speak.
I will give her phone number to a trusted friend here.
So do trust you will EVENTUALLY know all the gorey details if you don't hear them from ME the day after.
I watched Smothers Brothers and Laugh In when I was young. Cute shows.
Have you been to Tommy Smothers winery in Sonoma? I went many years ago. It’s lovely.
"Her daughter said Grafton would never allow a ghostwriter to write in her name and "as far as we in the family are concerned, the alphabet now ends at Y."" I truly wish there she had completed Z is for Zero. Sadly, RIP Sue (and Kinsey).
I did just GET the G is for Grafton back again, one of the books I finally let loose out of the library and now want back again, Trouble. I wasn't even aware of Kinsey and Me and I THANK YOU FOR THAT!
Indeed, I miss Grafton. She was a lovely woman.
I do wish you the best.
I will say a prayer....that the doctor has a steady hand and a keen eye. But for you I will cross my fingers and hope for a great outcome. (this way with fingers crossed and a prayer all bases are covered for you)
You should know that the old saw about "one hour of anesthesia=1 week recovery" seems to hold in our house. My DH was under for 3 hours almost exactly 3 weeks ago (absent the 6 days in I CC U and the 7 units of blood). Today, 24 days later he got up and said "I feel like myself again". Hallelujah"
Grandma1954 thanks for covering ALL the bases; glad you are on my team.
Alva,
Thinking of you as you wait to have your surgery. Wishing you all the best.