FROM ALVADEER: Just a spot of bother. Don't worry!
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.
All the phone calls sound a little tiring! But so happy that you have a strong support system.
At least the surgery is behind you. Whew!
I'm impressed with the Kaiser system accepting MAiD. I had no idea that was legal in CA.
Unfortunately, in my state, as far as I presently know, we don't have it, which I find rather ridiculous. It makes me more determined to use VSED if I get a dementia diagnosis, and to end things on my own terms (just as my brave aunt did) since I can't stand the thought of putting my family through that ordeal.
I know you'll keep all of us updated with the mammogram results. We all care about you so much!
Hugs and love to you.
I've been off of this forum site since November due to being thrust into caregiving urgencies and it's totally thrown me - I'm still drained from it all and finally trying to come up for air to breathe and have a moment for myself trying to catch up with my own life. It's been a rough four months.
And in very briefly skimming the site, I came across your post and I first want to say how sorry I am for what you've had to contend with - but on a VERY positive note, I am so very thrilled to read that thru all of your perseverance, strength, grit, and determination, you've made such positive strides and great results - what wonderful news!
Your radiant and effervescent personality has always shined through in your words - you're very special and I'm so happy to hear such promising news! I wish you TONS of continued great updates, continued healing, and ALWAYS MUCH HAPPINESS!!
Sending love and hugs :)
Since this update I have been through all of the Kaiser protocol. Now have access to Social Worker, Oncology fellow, and a whole gaggle of other folk. My advance directive has always been in for a long time, as has my POLST, but now added is the directives on palliative care (if when requested) and MAiD, which yes, Kaiser DOES recognize and do.
For now, followup is mammograms every 6 months. The chemo and radiations being refused (and there really isn't much on offer for triple negative cancers anyway, and with what they have, no studies over 65, and those showing between ages 50 and 65 likely only a 10% better chance with anything they can infuse and that risks all systems to pretty tough drugs, so a good choice, mine, all seem to agree, to forgo all that).
So if another tumor comes to breast, complete mastectomy. If not, and spread anywhere else an admit into palliative care. Then MAiD.
Everything looks set and I feel VERY WELL served, if a bit exhausted with phone calls.
Next step for me is meeting early April with my oncology fellow, breast exam once healed, setting up every six months (or so) mammograms. Feeling almost over with this and almost back to my norm.
Where it will all go from here? Anyone's guess.
VERY IMPRESSED with the Kaiser system and their willingness to accept the MAiD laws. So few docs will work with this.
I've finally gotten a chance to read your updates. I'm so happy to see that you had clear margins - that's such good news!
I read the 5 points that were raised - if I was in your shoes, at 81, I would make the same decisions that you have made.
You are one tough and very sensible lady and I so admire your attitude.
Hugs and much love to you.
March is Women's History Month. I suggest that we can honor your teenage surgeon for taking excellent care of you!
Which women throughout history do you admire?
I posted song lyrics on the ‘On My Mind’ thread that I adore from a young singer songwriter who wrote a lovely song for her young daughters.
Mothers and grandmothers are some of the most important inspirational people in our lives.
I would like to believe that I taught my children well as they were growing up. I must admit though that I am still learning from them.
As far as famous people go, I have so many wonderful women that I admire.
Ruth Bader Ginsburg
Jackie Kennedy
Amelia Earhart
Elenor Rosevelt
Sally Ride
Katherine Jackson
Dorothy Vaughn
Marie Curie
Rosalind Franklin
CoCo Channel
And a bazillion others!
I am still smiling about your news from your ‘teenage surgeon.’ 😊
I have a younger doctor and I often feel like I am speaking to one of my young daughters! I love her though. She’s great!
I was advised to get them because when you make two likely triple negative tumors you look to be not just having accidents, but doing it with some consistency and perhaps purpose.
I love the play, The Importance of Being Ernest where haughty old Lady Bramwell asks Earnest what his family connections are. What does his father do.
Ernest replies his father is dead.
Lady Bramwell then asks after the mother and her "people" .
Ernest says he "lost his mother" very young as well.
With that Lady Bramwell tosses her nose up and scoffs, pounding her cane on the floor and coming forth with:
"To lose one parent may be an accident, but to lose TWO looks like carelessness".
Or words to that effect.
They can do HISTOLOGY, meaning they can do all the workup on THAT TUMOR, and will.
But they cannot do DNA work without permission.
And you must sign and be fully informed, hence the classes.
They cannot even collect your DNA without permission, not that the FBI couldn't swoop in, steal your samples of everything, and secretly run DNA tests on you.
The triple negative is part of histology.
But BRACA and other genetics are part of DNA.
Complicated, all of this.
I'm making this last update. Then it's off our dance cards.
Physically I feel back to normal, albeit with a few added pieces of tape holding me together. The drain was removed yesterday. I'm a fan of drains, but not something you want to be attached forever. I've learned over time not to put them in my jeans pocket, because I tend to forget in my hurry to the bathroom that pulling DOWN my jeans results in pulling DOWN the drain, which is designed only to go so far.
Kaiser literature says "removal of the drain is virtually painless". I have to wonder how often the writer had a drain pulled. They're coiled up in there. As you can imagine, pulling them from an area that is already a bit bruised can sting very briefly. One I had pulled years ago sent into a kind of Camille-like faint from a vaso-vagal response.
THIS time was so easy I didn't feel it. Speaks to being prepared for the worst?
On the "lets-get-to-the-BAD-news" front all of the histology is in. And, yes, this WAS the Alien Part IV. She is a triple negative cancer. (Don't ask. She's the ugly one with lots of saliva.)
Given THAT, I was "offered" the following advice--standard protocol as written (and advice I would TAKE were I young, or still raising children):
1. Chemo
2. Radiation
3. Despite clear margins consider full mastectomy
4. genetic testing.
5. Lymph node sentinel testing to check for presence and spread.
The old nurse has made the following decisions: (again)
1. At age 81 I won't again be taking chemo or radiation. I may die, but not of them!
2. Declined.
3. I'm thankful margins are clear. I won't consider full mastectomy at this time. Lots of risk in another surgery. Will continue good mammogram and ultrasound followup.
4. I spoke long with genetic testing. I have no real thoughts against it but they make you attend a whole class on all of it and have you do forms; I did some, but got quickly bored with it. The truth is BOTH my daughters already tested and don't have the genetic component. That I may isn't relevant to me. My grandson may have children but 30 years up when they're interested, they can test themselves. And medicine will have progressed. To now lay on everyone "You know....I have this gene that could KILL YOU" doesn't make sense to me.
They're aware I make cancers (this being considered a new primary tho looking the first). And should be. Test your breasts; mine tried to kill me. Test your prostate. ovaries; don't ignore a thing. The Alien may have loosed babies and we have utterly NO idea where they'll show up. I think they want the gene stuff for their own info. Fine. But don't make ME go through hoops. Just get a vial of blood and have fun with it. My inclination is not to get it. .
5. Cutting out a few lymph nodes? Oh my no. What in the world's the sense of knowing the Alien's on the loose with a new movie script for my body when I am not treating? I'll know soon enough. If you recall my first 35 years ago cancer was FOUND in the lymph nodes, two fused together like a huge olive pit. No martini! Why in the world would I want to know this today when I feel well?
That's the story. Amazed I didn't run out of room. Now let's let this sink below "What are you Reading" and all the rest. Until/unless it resurfaces dripping saliva and I need you all to "go-Ridley" for me.
And THANK YOU ALL.
Some people are naturally funny. I really do feel like laughter is good for the soul.
Jim Gaffigan is hilarious!
Thankful for your talented, compassionate surgeon. Thank you, Lord, for this woman. 🙌
Thankful for YOU dear one! 🫶
Alva could have a second career as a stand up comic! There are several posters on AgingCare that are naturally funny. I adore people who have a wonderful sense of humor.
Oh my gosh! I would LOVE to be a stand up comedian. I certainly have tons of material. I’ve got stage presence. I did theatre performances in school.
I think it would be a blast to do comedy! Hey, a stand up act or hosting SNL! LOL 😆 I am not famous, so I am not a contender for SNL.
A picture tells a thousand words!! ☺️ But your words painted a real picture, raw, courageous but also stand-up funny!
Bless that surgeon 🙌
Glad it’s all taken care of. 🎀
Happy for you and your journey, yep, just a spot of bother. Praise The Lord.
I will also continue to pray for you.