Follow
Share

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.

Find Care & Housing
1 2 3 4 5
❤️
(4)
Report

Thank you for sharing with us, Alva. Praying for you as you walk thru ❤️
(4)
Report

I had a breast biopsy a few years ago which was SO painful, it still hurts. Truly, a ptsd experience when the doctor swore it would only involve mild discomfort. He was male of course, and apparently never had a very large needle pierced thru his scrotum before. Anyway, my abnormality was normal breast tissue after all that pain and suffering. I don't blame you about turning down the biopsy.

Don't forget about the appeal process thru Kaiser, if need be.

Sending you love and hugs and knowing your fiestiness will get you thru this situation too. Not w/o some anxiety and nerves, but you'll come out the other side just fine.
(7)
Report

AlvaDeer,

My mom had her first mastectomy when I was 5 years old. Very difficult for her with young children. She had her second breast cancer when she was 63. It was a small lump and the doctors suggested lumpectomy. She wanted it off. So, second mastectomy.

She embraced the new found freedom and lived 31 years with that freedom.
I am sorry you are facing this. Keep us posted as you know more.

We care about you, our friend!
(3)
Report

Lea, as far as fearing pain, I have taken and can take a lot of it, but am pretty PTSD on the breast after the first bout and all the biopsies by history. My worst fear is them puncturing into a cancerous tumor and then letting it hemorrhage/seep into the breast , into the circulatory system, and throughout wherever it choose to nest next. Brain? Bone? Choices aren't great.

As far as MDs and their "a little pressure" you and Chuck are more than aware what we all go through with them negating the pain. I have seen women have core samples taken who didn't mind it a bit. And I have seen them end up hours later in the ER with breast hemorrhaging blood and swelling and bruising. It runs the whole continuum. But my FAVORITE STORY EVER regarding breast biopsies is the doctors that admitted they vied with one another for the most colorful swear words they heard that week. BLESS THEIR LITTLE HEARTS, huh? Hee hee.
(2)
Report

Alva, I saw your post on sp’s thread and wished you well.

Please keep us updated on how things are going. Will most certainly keep you in my thoughts.

Sending love your way today!

I had a biopsy right after I gave birth to our second daughter. I was scared to death. Fortunately, the mass was benign.
(2)
Report

I hate to hear your news, but have to say that I admire your outlook on it all.
I know that you're not a believer in God or Jesus, but you know that I am, so I will be keeping you lifted up in my daily prayers and trusting for your total and complete healing.
(2)
Report

I'll be cheering on for you! Best of luck, and good for you for knowing what you want and sticking to your guns.
(3)
Report

I'm sorry to read this Alva 🤗
(3)
Report

Alva,
I’m sorry that you have to deal with this, now.

I appreciate your sharing with all of us.

You continue to inspire with your no-nonsense, well thought out, well-researched approach.

We all continue to learn from you.

You are a blessing to all of us.

May you feel loved and supported in this part of your journey. 🩷
(3)
Report

Thank you for the update and I'm truly sorry that, apparently, cancer has once again reared its Alien head. In a similar situation, I think I'd be exactly on the same page you are. Except that at 87 I might not undergo surgery and proceed directly to hospice/palliative care when the time was right. However, again, "who knows" is applicable because "who knows" what I might actually DO in that situation?

In 1978 I had two needle biopsies at the same time. I was in my early 40s (a few months after I married my current--and last--husband). Ouch, for sure! Having lost my mom to cancer in 1974, I got lucky in that both biopsies were negative, but there's a 99.9% probability I would not do it again. And that was WAY before the issue of potential seeding (which makes sense to me) was discovered.
(3)
Report

My ENORMOUS thanks to you all. I think I have an inkling now of what Lea felt when she told us all about what she was going through. You all are incredibly comforting to me. No, funkygrandma, I am not a believer, but my good friend Diane has been apologized to god for me for a LONG time, and all prayers are always gratefully accepted. Diane just wants someone in heaven she can beat at canasta. I always get beat at cards, and I'll be darned if it's gonna be ME!
(6)
Report

Alva,

Believer or not, I love your spirit!

I was raised to have faith. Honestly now, I have no idea how I feel or what I believe. I suppose that I could be described as agnostic.

Faith is based on believing without seeing. Science looks at facts. I’m the person who wants to see proof! 😝 So, not sure what that says about me.

I agree with you on not wanting to experience pain. I am a wuss when it comes to pain.

Hoping with all my heart that everything goes well for you but if not, hoping that you have access to the very best meds so that you won’t be in any pain whatsoever.
(2)
Report

(((((Alva))))). Sorry to hear this but I totally endorse your choices. Dd had the works and the needle biopsy wasn't bad for her. She had a lumpectomy as they have found that for her type of breast cancer lumpectomies are the best choice and she was comfortable with that. But to each her own, for sure. It's important to go with your own solutions. Prayers for a good outcome and little hassle with insurances.
(2)
Report

Alva--

I am 100% behind your choice!!!!!!!!!!!!!!!!!

I had a friend whose DH had kidney cancer, and yes, the hollow core biopsy they did tracked little cancer cells all along it's outward journey. The cancer returned with a vengeance. She said you could 'connect the dots' on his scans and see exactly where the needle had gone.

He fought a good fight, but did die after about 5 years of treating (and fighting with insurance co!). She is sure that had they known more, they would have done their research better.

I had a 'fine needle' biopsy of one of my cancerous lymph nodes. Not a hollow core. Then the whole node was removed about a week later.

For me? It was the bone marrow tests that were the absolute worst. They just numb the hip region and then by brute force, work a screw type needle into the hip bone (I think actually the ileac crest?) I screamed, and I am NOT a screamer. I thought my DH was going to pass out. 2nd time around, they gave me a fentanyl lollipop--OMG!!! Ask for those when you have to be stabbed. It still hurts, but you really don't care.

I am wishing you luck as you navigate this. You are tough. You are smart--you'll make the decisions that will be best for you.

What a way to start a new year, right? Suddenly things just jump into perspective in a way that they didn't before. You know, b/c you've done this before.

I will keep you in my prayers--even tho I know you're not into praying :) Can't hurt, right?

I'm not having a tombstone either, but if I did, it would say "I TOLD YOU I was sick" on it.

Dark humor helped me cope. So did fake eyelashes and eyebrow pencil.

See if you can start the good drugs ASAP. :)

((HUGS))
(4)
Report

Back in the 60s my husband's Grandma found a lump in her breast the size of a pea. She absolutely insisted they give her a radical mastectomy. She was cancer-free until her mid 80's when she got pancreatic cancer. She was a good candidate for the Whipple at the Mayo here in MN (even at her advanced age). She was the oldest Whipple patient to that date. She had nothing to lose but, PC always wins. Yet I often think about how many years she gained by doing something incredibly difficult and brave, against what her doctors were advising. Your story reminded me of her.
(2)
Report

Frankly, Alva, I’d go through with Kaiser’s recommendation. If they check and don’t find something, why risk an invasive surgery at all?

If they find even dcis in your remaining breast, they’ll be pushing you As to what you want. No hollow core biopsy will cause any cancer to go Mets.
(1)
Report

Alva, just got this all mangled and backwards as I saw your reply to sp and sent you a pm before I saw this…..anyway, agree with you on not wanting a tombstone, but we often threatened my dad due to his disregard for respecting food expiration dates even slightly, with a grave marker reading “He shouldn’t have eaten that”😜
(2)
Report

Sorry for the diagnosis Alva.
My GM had a breast removed at about your age. No radiation or chemo. She did great. You will too!
(3)
Report

Alva,

Sorry to hear of this news . (((Hugs)))
Do it your way ! I’ve often thought how needle biopsy could spread disease.
(2)
Report

Very sorry to hear this. Wishing you to recover well!!!
(3)
Report

I agree Alva thats why I would never get a bunch biopsy at the dermatologist if skin cancer is suspected.
(1)
Report

Ah, Alva, so sorry to hear this. Hopefully you can get the insurance thing worked out. I'm glad you have he support of your family behind you, as that can make a big difference!
(3)
Report

"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!!!""

It depends on the 81 year old Alva. Based on your posts and insights I think people might just say that 81 was way too young for you to go.
(5)
Report

81 is young in my family of ancient turtles. We say stuff like, "She was *only* 81..." :-)
(5)
Report

I Am sorry you are facing this. I had first mastectomy in 04. I was Amazon til 09 when they found calcium spots again. My needle biopsy found no cancer yet but precancer. I had the mastectomy anyway as prophylactic. Told doc and insurance cheaper than next five years of quarterly scans:) they found 2.5!cm diffuse tumor in post surgery biopsy. Surgeon told me they were glad I decided to do surgery. It was cancer just not in needle biopsy spot. Push for what will make you feel better And worry less. We are all sending you thoughts of light and healing. My back did better afterwards yet with the rebalancer 😂
(4)
Report

So sorry to hear this Alva, and hope the insurance company will come through and do what's right. I hope you're here for a long time more. I never thought about punch needle biopsies spreading cells! Good thing I didn't know this as I had one done last year, but in my case they were pretty certain from imaging that it was a benign intraductal papilloma. Biopsy confirmed that was likely the case. I opted to have the small section of the duct with the papilloma removed altogether surgically since these occasionally become malignant, especially in older women (and I'm your age, 81). I had no prior breast cancer, no family history, but I wanted to be on the safe side. I can well understand why you'd want a mastectomy.
(4)
Report

@Midkid:
Can add your hollow-core bx story to my folder!

We don't yet know how much they spread cancer as no one does the studies on WOMEN. Go figure. They work well for the docs. They have done studies on men for prostate hollow core, and yes, they can spread cancer cells and right along the needle track as you said.

Worse, in a good number of women there is bruising, even hemorrhage of blood into breast, so all that tumor material (and this IS it, as it's the irregular feel, and etc) simply empties right into the breast. And from there, who knows to where.
To me it is counter-intuitive to do such a thing.

When I posited my theory, in response one doc said "Oh, the cancer doesn't spread because cancer cells like to 'stick together'".
I wanted to say I never heard anything so stupid from someone who graduated medical school but I have, so instead I said "Really? Gee! Funny how they end up trickling into brain, bone and lung, and lymph then, isn't it".
Happily that wasn't any doc here now making decisions on whether I die now or later, ha ha.

And I soooo agree on humor!
I swear I will die laughing, and I love those who MAKE ME LAUGH.
When I had my first biopsy my roommate Casey and my then-new-love, N. and other friends were at my house. Casey said "I'll drive to work (we were nurses same ward) and take you home". My friend Roger said "No, I have the car that day. I will get her". My new love, N. said "don't be silly; I am going with her and bringing her home".
And Roger piped in with "Oh, H---, We'll ALL drive and we will bring her home with the cars in a row, the headlights on, and driving slow".
Meaning of course, the proverbial funeral procession.
I thought I would laugh until I pee-ed, and that was 35 years ago when the bladder functioned so much better!
(8)
Report

Alva,

Thinking of you today. Wishing you the very best as you continue to explore what to do next.
(1)
Report

Hi Alva. I noticed your post under Discussion… how could I miss it, it’s all CAPS!!

You being a retired nurse, I always read what you had to say. I even learned some things at my age! I like your candor, your honesty, and your wisdom (not to forget humor). I would always look for your response because often there was nothing more to say. I’ve often thought before responding to a post, “What would Alva do?”. (Although we do disagree about “therapeutic fibbing”.). At 81 we’ve been around the block, and like you, I’ve expressed my wishes to my kids to the extent of writing my own obit!

So I’m sorry the big C has crept up on you again, and I admire your resolve and strength in not wanting to be a pin cushion. On behalf of all the others on this forum, please continue to offer your two cents because it’s worth more than gold.

In closing, When a 104 year old lady was asked what the best thing was about being 104, she replied, “No peer pressure”.

Best of luck, Alva.
(5)
Report

1 2 3 4 5
Start a Discussion
Subscribe to
Our Newsletter