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.
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I've been lifting you up in prayer daily and will continue to do so.
God's got this and you!
I’m glad that you are comfortable with your doctor.
Waiting in limbo is unnerving to say the least. It must be a relief to have a plan in place.
Sending a bazillion hugs your way and I will certainly keep you in my thoughts.
Wishing you the very best.
I wish I could face such unsettling, scary circumstances with a clear head and fully accept and be at peace with my choice. Such resilience is outside my personal neurology's capabilities, I think. :)
I love that you manage to keep your humor here, even though I'm sure you're shaken. I admire you.
I will be following your journey into battle with this thing and cheering you on. You're strong; "the alien" has no chance against you. 💗💗💗
Sleep well tonight .
Prayers for all to go very well for you now, Feb 21 and onwards.
UPDATE ....As promised.
Appt with surgeon today, who looks beautiful and about 14 years old, but who had a runny nose due "not to covid" but to her little one in school, so cannot be TOOOOOO young........................
But IS too smart, because pretty much she left this all in my hands.
Which made me instantly trust her.
All my choice.
She said she would do whatever I wanted.
She would do a mastectomy and at 81 with my second probable cancer I more than qualified for prophylactic removal of the breast.
OR
She would do HER recommendation.
Tumor is isolated with no suspicious activity around it.
I am an active 81 year old.
She would removal of the tumor with wide margins, taking no lymph nodes (since I have already refused radiation or chemo and no nodes would preserve my gardening arms in good condition).
She would recommend mammograms yearly after and if another tumor shows up she would remove the breast (but she sees no reason one should since this one took 35 years to show again somewhere if it is even the same histology.)
She recommended (free) genetic testing since this is my second tumor, likely malignant, and I have grandson who may have girl children who wish to know (my own daughters being already tested and heading to 60s fast are negative for any genetic components, but they can skip a generation or two, so doing it for the great grandkids.)
The reasons for no mastectomy pretty clear. Deeper anesthesia, having to be off ASA blood thinning longer, longer recovery, more likelihood of seromas complications with age, complications of anesthesia and on and on and on. And said "You had a mastectomy. You KNOW what recovery is; you had a lumpectomy excision, and you know the ease of it compared".
Then left it to me. Take all the time I like.
Which of course was the charm.
I trusted her.
Lumpectomy with wide margins to be done Feb 21st and you can bet I will be here around then asking you hold me in your hearts that day. It is pretty much a given this is "the alien". Not a good histology expected by anyone. But this is getting it removed, and having a few more years, at 81, to bother the heck out of all of you HERE.
In this stuff, kids, we go with our gut.
It's all we have. We place our bets and we spin the wheel. I am comfortable in this. That's the best you get.
Thanks for all your good wishes. Keep me in your thoughts. Wish for me the outcome I DESERVE. Ha ha. I am VERY comfortable with that one.
Thanks you all for all your good wishes to me, because they mean so much at this time. They honestly do.
Please keep us updated. You'll be in my thoughts, my friend.
Alva, before I forget to share this, you are the only person besides my mother , that I know has read .Kristin Lavransdatter. It was on the bookshelves as I grew up but in the original Norwegian so I couldn't read it. I got into Bertrand Russell's "A History of Western Philosophy" and other tomes but not Sigrid Undset's works.
Loved "The Curious Incident of the Dog in the Night-time".
Breathe deep, stick to your guns and take care. ((((((hugs))))))
I agree that not getting chemo and other treatments after a certain age should be the rule not the exception. Unfortunately sometimes it's hard to let go of life and people want to keep trying to beat the grim reaper even if it makes them miserable in the process. I think Bob Dole was 97 and he had stage 4 lung cancer and said he was going to undergo chemo. That lasted I think a month for him before he stopped the treatment that he said was too brutal for him to continue and accepted that yes he was going to die.
My moms friends husband had lung cancer and he got treatment and they said we can stop now or try and shrink the tumor some more because it wasn't 100% gone. He opted for more treatment and the tumor shrank but it was in a spot that caused his lung to collapse as the tumor shrank (if I am remembering correctly) and he died shortly after from the collapsed lung not the actual cancer. If he had stopped treatment instead of continuing he might have still been alive - who knows. It seems in this world are chances are 50/50 with anything.
So sorry to hear you are having to deal with this. I think you are right about not doing the needle biopsy for the reasons you describe. I had a similar situation and choice with a kidney. My doc was against the biopsy because of the risk of “seeding.” With your history why risk that - it is a very legitimate concern. I hope your insurance company supports your needs and considers that not being proactive could cost them more. They don’t need to know what covered treatment you will or will not pursue. Maybe the $ consideration will make them see it your way. Anyway, I always enjoy your posts and answers. Best wishes.
You’re an inspiration for the rest of us how to do 80.
Hugs from Florida!
The book I read was by the guy who did the book with the autistic protagonist, The Curious Incident of The Dog in the Night-Time. Mark Haddon. THAT book was masterful, and A Spot of Bother was fun. A family story. Or story of a family.
As to me, at 81 I had better look at most things as a spot of bother, because they pile in one after another, with varying degrees of bother. Hee hee.
Alva, my thoughts are with you next Thurs (and every day) as you wade thru the muck and the mire of the KP system. I'm right there with ya, sister.
Barb, prayers sent that your daughter's biopsy comes back soon and that it's negative.
Newbiewife, yes, most excisional bx in the case of the breast means removal of the entire mass, tho in some cases they may not, so good to get cleared up just what their plans are ahead of time. For me I am wishing entire breast went as if positive (and it sure looks so) then will have to go BACK again for mastectomy. At 81 won't be doing radiations and for lumpectomy they always do. Won't be doing chemo again either at my age. Pretty much will just lay the cards out on the table and give it best game. I went through cancer once. So I am pretty clear there are worse things to "go of". Congrats on your negative outcome for sure!
Hoping that your daughter’s results of her biopsy will be benign.
My 41 yo daughter had a core biopsy Monday, awaiting the results.
That's why I posted it as "a spot of bother". An expression out of the UK I have always loved it.
There's even a book titled "A Spot of Bother" by one of my favorite Bristish authors.
UPDATE meanwhile.
Appointment for January 25th with surgeon to discuss excisional biopsy.
Our stumbling block or point of argument and travail will likely be that I want the WHOLE TUMOR (quite small) removed. Not carved into like a slice of turkey meat and left to seed itself while they convince themselves it is malignant and they will/can remove the breast.
Seems a bit like the simon-says game to me. But that's how it's done in the Kaiser system. And that's where I am at the moment.
Meanwhile taking a week off from thinking overmuch about this.