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.
Sending hugs and support your way!
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.
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.
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.
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.
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!
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 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 ……..
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 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 !
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 hope everything turns out okay for you. (((Hugs))))
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’m sorry that you’re having to go through person after person to get answers.
I pray that God gives the right person some wisdom, and that you can speak to them, EASILY, without HASSLE.
Thanks for updating us. We continue to learn from you.
I am hanging in there.
I always defend Kaiser, and so far thinking/hoping to continue to do so, but I will say this system isn't having Marcus Welby managing your case. (I know, I just dated myself real bad. All the young ones are gonna have to research that one). Not even Dr. Kildare, perhaps more remembered by this generation.
I can see now why people hire those specialized RNs to review their case and manage it, phone calls, emails, copies of everything and etc. to the tune of 700.00 an hour. Likely worth every cent. (Kidding as I have no idea what they charge.).
What I have at Kaiser is now FOUR docs all discussing stuff with ONE ANOTHER, but not with ME.
My own doc's last email was to the effect "Well, then why don't YOU call the surgery clinic. Number is on the website" (no it isn't but could get from main).
That without giving me a name of surgeon communicating with her about what they WILL do and what they WILL NOT do given I refused core bx as too invasive, and about my insistence the entire tumor be removed.
So I wrote back to say "Could you give me the name of the surgeon so someone at that clinic knows what I am talking about". Answer was then that she's getting "a lot of emails" (read TOO MANY) from me. And cricket re a name.
Then I get a confusing email from the Breast clinic (who my doc said no longer involved).
So currently don't know who is managing things. Breast Clinic? My Doc? Some nameless surgeon who will call when SHE (at least I know it's a she) has a chance. Anyone? Because we saw the face of a gnarly looking alien on 1/3/24.
I replied to THAT email (breast clinic one) "I feel a bit alone and afraid, mostly because I don't know what one person is managing all this."
Truth is that it isn't one person. That's the problem.
That's why so much falls through the cracks in our current system. So unlike the one where you had a doc and maybe one specialist and your doc followed your case, managed it, even saw you in the hospital.
Meanwhile I just hang in there. 4 to 7 in the morning is my difficult times when I awaken early and can't get back to sleep. Do the awful thinking we do when we are scared. Question myself why I am fighting, and why not just kind of working on what another thread recently called the plan B. Hee hee.
I have a good friend BL now in hospital with severe emphysema. She texted me last night.
That lovely lady had TWO types of cancer, one in each breast at the SAME TIME four years ago if you can imagine.
And yeah, I tell her she cannot continue to smoke. And yeah, she ignores me. Always says she knows and she will stop and that basically shuts me up. She lives in FL. so I don't see her and can't rule with the rod of iron.
I think that 2024 starting with a kind of a bang. So far I am not fond of it.
ON TO COVID, just because. And this is interesting. One of those "so many emails" to my doc was to say "Given that spike protein thing, and my having now an almost certainly malignant tumor growing adjacent to where I had total SEVEN covid shots over last years, should I got the new covid shot". I take all shots L arm because have R mastectomy with removal nodes and shots not as effective without + lymph system.
Her answer may surprise you.
NO.
She didn't give a reason just said it should be/is/will be a yearly booster now. Get it next fall. That assuming I will be around then. Watch the new studies I guess. I have to wonder if they are being done at all.
Should you ever have to face down the big C. breast wise, there are WONDERFUL face group sites you can join, and the women are marvelous, full of information, wisdom, and hand holding. I have been a many years long member of one I love.
There's lots of support out here, just a matter of trying to find it, I guess.
Thanks so much for your best wishes, and my heart goes out to you now. My brother died in May of 2020. Miss him still. But was so very lucky to have had the many years we had.
I have followed a lot of breast cancer sites and experiences since my 35 year ago start on this journey.
And as a nurse have followed with a curiosity born of my avocation and my diagnosis.
I could well be wrong (and have been so often). It just is counter intuitive to me for YEARS that we would stick a hollow core needle into a mass that may be (is highly suspicious for, according to the readout) malignancy.
They have done studies on kidney and prostate and found that SEEDING can occur, and indeed right along the needle track. But no stuides on breasts. I suspect that is because a positive on a breast and it is pretty much gone. Removed. Out of there. But that is ALL GUESSWORK.
I faced down my first breast cancer from my gut, doing what made SENSE to me.
That's how I will face this one. I have survived it for 35 years. I am lucky. I am blessed. I am ever so thankful. I am 81 and it's all OK at 81. I could not have been luckier.
EVERY DAY IS GRAVY after what I went through. For me, that is.
And most days have been pretty good eating even before. Even after.
I appreciate your input.
I only ask women to think.
If something is counter intuitive to YOU, then go with your GUT. I think that is true with most of life, quite honestly.
We ask opinions of others. And a lot of times that helps, but more times it can confuse us. What we know in our gut I think, should be honored. Just my humble opinion. Or my "gamble".
However this goes I have not a single thing in my life to kick about, and I won't be kicking. I have been lucky. I have been so amazingly lucky that I would do anything to dice it up and spread my luck everywhere. Just sprinkle it out over the world.
I thank you for your input.
Just as an addendum. I think all here already know this......
I think this is the most AMAZING site. I am completely ADDICTED TO IT.
I came here when my beloved brother, twin in all save the year and date of our births, fell ill with Lewy's dementia. I was so alone, so overwhelmed, and so desperate, and this site LIDTED ME UP. He had made ME his POA when for all my life I had depended upon HIM to save me (and he had). I felt so lost and alone in the forest where he had been Hansel to my Gretel.
I have lost him, but I have gained tremendous insight here. I have gained help. I have learned we ALL fell helpless and alone at some point, and just SAYING IT ALOUD can bring salvation.
It has been an amazing gift, to me, this page. An amazing gift for which I will be forever grateful.
Also, as an aside, thank you for your discussion on this post/announcement about your professional view of a needle inserted into a mass for a biopsy. I had that done once. It turned out to be a cyst, so no harm and dealt with quickly with no suspense. I wondered later, if it hadn’t been a cyst, was sticking a needle into it just risking cancer spread.
It is really hard not to spoil fur babies. I have spoiled all of ours. Now I spoil my four legged grandchildren.
Yep! There’s always going to be drama somewhere 😆.
Peeling paint group? Okay! LOL 😆
I can't tell you how often I say "I wish I could be a fly on the wall". Guess if you were a ghost you COULD be. Well, not a fly, but a ghost on the wall.
RR, I just love this little Pest Hole as you call it, but somehow I have managed to usually fall in with the more pleasant pests at best, and at least interesting ones at least. I am not wild about the human species, but love most of the other ones. And I just love a whole ton of things. On FB I even belong to a group that photographs peeling paint, so--you know--I find lots of stuff lots of fun here. I have been just horrifically lucky in my life. And I DO recognize that so many are not.
Nope, they are not the least bit spoiled. Loved and cared for better then many peoples children but, not the least bit spoiled. My husband on the other hand, well, we tease that you can smell him down the street he is so spoiled. But, so am I.
Personally, I think the ones that die young are the lucky ones, they have accomplished their purpose and get to leave this pest hole. Just my personal opinion. Regardless of color, there is an age of accountability and I believe that ALL who die before that age go straight to the presence of GOD ALMIGHTY.
I certainly don’t blame anyone either for any which way they choose to feel. Not at all.
I do think a lot of things are luck of the draw. Bad timing. Wrong time, wrong place.
Some things are out of our control no matter how careful we are. I find it amazing that some people even survive suicide attempts.
I don’t believe in woo woo stuff either. I am amazed at how many people do believe in it.
You say that you don’t want to meet yourself around the corner. I am fascinated by people who believe in reincarnation.
I have a friend who is terrified of bridges. She went to a therapist who does ‘past life regressions’ and was told that she died on the titanic! 😝 So, that’s why she was afraid to travel over water.
I asked my friend how much she paid this so called therapist to hear this stuff! I have no interest in hearing about any ‘past lives’ or my future.
Tarot card readers are a dime a dozen in my area. I have never gone to one. It’s fine if people are getting a reading for entertainment. I don’t believe that there is anyone who can tell the future by reading cards.
If you could come back, Alva, who would you like to haunt first? 😜