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 can't begin to comprehend how messed up things are between your doctors and your insurance, as if you are just a name on paper to be shuffled around. I'm so sorry.
I hope everything turns out okay for you. (((Hugs))))
It made me think of a brilliant graphic that my BF sent me:
https://www.pinterest.com/pin/383861568209418837
I have this taped to my fridge.
Thinking of you often. Praying for you!
I abso lutely agree with you about the needle . I have been saying that basically ever since they did 'exploratory surgery's on my step father and came back with stage 4 cancer . EVERYONE seems to have stage ,4when they find it ...I smell a rat ..I'm very Leary of doctors and cancer as a result..not sure what I'd do .
But you obviously have a sound plan and I admire your confidence in your decision . I had kaiser insurance and am not surprised you may be going into a battle..I wish you the very best in these coming years I'm sure all of our hearts and prayers are with you . Thank you for sharing with us ,we love you !
Just do know (and boy can LEA attest to this) being in the system is--well, being in the system.
Geaton, thanks. I accept thoughts, prayers, even votes for President. And in fact ANYTHING I CAN GET, hee hee! You know me. As the kids today say "It's all good". (until it isn't).
Beatty, this is the norm of it today. So many Chef making such a stew of things. Later when NO ONE has called you for a month they all say "But I thought the (breast clinic, surgeon, your PCP, the radiology dept, surgery) was on this!!!!"
You all know, those of you who ever read me, that I am big on telling people they just "want to be mad" so they don't have to be "scared". Ha ha. I am finding out it actually WORKS!!!!!!
Hothouse, yes, a "lumpectomy" in the form of an "excisional bx" that takes the whole lump is best hope now. Then dependent on histology I can convince them to lop off the rest of this breast and I will at last be all flat. A two-fer I was hoping to get done in one round. As it is I am an amazon, a uni since 6 years ago explant of a Frankenbreast that was troublesome for about 30 years. I am not a fan of reconstruction and I should have known better; I plead I was younger then and in a new one year new relationship. He has stuck, by the by. Proof he is one extraordinary man (in so many ways).
CX, this is just how it is and I am using all the catchwords I can on them. "Confused" about plan. "Afraid". "Anxious" Feel "alone". All the things Kaiser won't want particularly to see in their charts. "No one in charge". Etc. and blah blah. Ha they will be so sick of me they will get the breast and cut out my heart while at it. Hee. Whoops.
Graygrammie How COULD I forget Ben Casey. I quite crushed on him.
I will keep y'all informed. Meanwhile know I am doing OK and I have GREAT family support and understanding supportive friends. Couldn't ask for more.
Like I said, we ALL HAVE OUR STUFF. ALL of us.
I’m almost 59 , but I remember Marcus Welby , my Mom watched the reruns when I was a teenager . James Brolin was so handsome ………….lucky Barbara Streisand ……..
I watched Marcus Welby and Ben Casey.
I hope you will be able to sort this out soon. Sending love, hugs and support your way!
I'm so sorry that you're going through this.
I have a suggestion, but I haven't had the time to read all the posters' comments yet. So my apologies if I'm repeating what somebody else already suggested before my post.
1- Have the needle biopsy. If it comes out negative then you don't have to do anything but CELEBRATE!! (My mother went to Italy for 2 weeks when her needle biopsy came back negative!) (When my own needle biopsy came back negative I went on a cruise!) Think about how you'd like to celebrate if a needle biopsy came out negative! (And yeah, the needle biopsy hurts, but not that much. You can get through it.)
2-*If* the needle biopsy comes out positive, don't wait, schedule the lumpectomy or mastectomy right away. And, since the biopsy gave a cancer diagnosis, Medicare should approve coverage for the surgery you choose. Take the money you save for a self-pay surgery and do something wonderful with that money.
Also, I think the idea of an 81 year old woman getting elective major surgery isn't a good idea - especially if you don't have a diagnosis.
Regardless, wishing you good health and happiness. Hoping that whatever you choose to do works out well!
Ex RN here. I think that we ALL (three docs) agree this is almost certainly malignant. There are signs. I could go into them, but not here. Include irregular borders, etc.
I don't believe in breaching a malignant tumor and leaving it in. Histology takes, they tell me, at least a week. Many core needle samplings (the kind they want to do) leak and or hemorrhage into the tissue of the breast. A tumor, unTIL it spreads, keeps its cells together. To my mind, once it DOES spread it's cells out, whether through time or being poked, those cells can spread in the lymph system and throughout other healthy flesh.
I wouldn't be doing chemo at my age. I wouldn't be doing radiation at my age (as you will see if you read everything I did the cancer journey once already on the right breast). I can't afford spead IF I can prevent it. A big if, as you will know.
I prefer that this tumor be removed intact and then tested. If they would like to do that in two steps I am fine with that, tho I would prefer removal of this breast that after 35 years has decided to start making tumors (whether benign or malignant) in fact. And will try to get that done in any case.
I already wrote about tumors being jabbed with core needles and spreading "SEEDS" of the cancer in some testing done on kidney and prostate. It's rare, and studies on women seldom done interestingly enough. I choose not to risk this.
I appreciate your input.
When we face down cancer we make the best decisions we can make for ourselves, then spin that old roulette wheel.
Again, appreciate your input. I will be shocked if this baby comes back benign. I have dealt with benign tumors and fluid cysts before.
Thanks for your reply, and for taking the time to explain more about where you're coming from. As an experienced RN, a breast cancer survivor, and a very smart woman you're highly informed.
I just hope (along with the rest of this forum's participants) that you don't have cancer, after all. Assume you are healthy until proven otherwise, is my motto. In my case, I had 2 doctors, a mammogram and a MRI diagnose breast cancer. I went to Stanford Medical Hospital for a second opinion and more tests (including a biopsy). Stanford couldn't detect any cancer, so I had to go back to Stanford every three months for over a year to repeat all their tests, just in case they missed something. This happened in 2005. I've had no incidence of breast cancer since then. False positives happen.
Although I'm not saying that this is what's happening to you. I can see your logic about removing the breast intact.
I feel strongly that everyone has the right to choose, and
I'm 100% supportive of any decisions that you make, along with the many, many others that wish you well.
Lost, you kind of gave me a giggle.
Everyone who has seen the Alien is kind of thinking they KNOW what this is.
The docs often do.
Then there is my nature. I am a pessimist and always was. It kind of has served me well in all truth. You see, when things come back "bad news" I kind of shrug and get on with it with a sort of "thought-so" attitude. And when they come back "good news" I am ecstatic!
So I seldom go into that shocky place of bad news bringing me any kind of major shock.
I am real pragmatic.
I recognized that the first bout 35 years ago, given it was in two nodes already, might indicate the end was coming.
Hon, after THAT, EVERYTHING is gravy! Know what I mean?
81. Like I said. No one will write any obit saying I died young and beautiful. Social Security has wasted already a whole TON of money on me. And there a ton of things I fear more than cancer. Dementia is one. ALS. There's tons of more difficult "sentences" out there.
I will let you know one way or the other--all of you.
And I would just love to hear "I TOLD you so, you idiot!"
Again, thanks for your best wishes and advice.
I sense that my PCP (she's my 4th in 9 years after my long-time physician left following the buyout) really has little idea of who "I" am. I'm just another old woman with age-related issues. Mostly that's O.K. since I'd actually prefer to avoid the medical industrial complex--until I need EOL support--except for occasional app'ts. and necessary Rx's, but stuff happens in old age that may change that. The current system doesn't always instill confidence. Also, it now takes a MONTH to get a doctor appointment, likely thanks to COVID.
I hope that being a long-time RN will help you find a doctor who RESPECTS and will listen to you--and be your main point of contact. MUCH less frustrating.
Sending hugs and support your way!
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.
My 41 yo daughter had a core biopsy Monday, awaiting the results.
Hoping that your daughter’s results of her biopsy will be benign.
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!
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.
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.
You’re an inspiration for the rest of us how to do 80.
Hugs from Florida!
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.