What about this "Standard of Care"?

[jersey-jazz]

It seems to me that with MBC, the cancer moves faster than the cookie cutter pro forma that the committee of health care professionals comes up with. The recommendations that the doctors must follow are sometimes outdated by the time they are published. I admire the professionalism of the doctors at MSK and at NY Columbia. However, on the other hand, too often, the doctors rely upon "Standard of Care" without doing their homework and without considering the special circumstances of each patient. This is written after reading about these horrible open, festering wounds on the breasts of some of our sisters. Their stories about their ordeals make me want to do something drastic to those doctors. What say you?

[mariootsi]

I agree!

[Dragonfly2]

Oh my goodness, you are so right! those images are seared into my mind and I feel that someone is being "uncaring" if they rely on following this "standard of care". Patients must do their own due diligence and insist on getting help. Though I know it's easy to go down the rabbit hole looking for cures or help, a cancer patient can't just sit back and accept the standard...we are all different with different needs.

[jersey-jazz in reply to Dragonfly2]

One of the problems, and you know it, is, when we have all these cancer treatments that take so much out of us, we often do not have any sort of strength and perseverance to go to combat. We just want a peaceful life. We often go along with treatments or non-treatments that we disagree with just because we want to get through the day, somehow. I find this MBC thing a lot of hard work.

[Dragonfly2 in reply to jersey-jazz]

Of course…I sometimes just want to close the book on all the chatter…one day at a time. Hugs😍

[Hazelgreen]

I agree with you, Francis, that any fool who can read can follow their professional guidelines regarding treatment for MBC patients.

I have a very charming oncologist who absolutely refuses to read research studies. He is horrified when I suggest even legitimate treatments being studied in other jurisdictions. I don't know if he has ever been sued, but I think that's no excuse, given the very high salary ($500,000+) he is given in our socialized medicine system, and he's incorporated so he pays less tax! Actually, in his case, I think Saskatchewan even provided his specialist training.

I think we could save the majority of our tax dollars if we hired only an overseeing oncologist who approved the treatment protocols for all the MBC patients. Service would be no worse if totally provided by an intelligent nurse familiar with the usual concerns/complaints of patients. Instead, we hire many nurses and clerks to do the individual oncologists' bidding when they could be servicing patients directly.

I am grateful that I personally pay very little of my income on my treatment. Still, think of all the good Canada could provide to the needy here and worldwide if we didn't waste tax money on less than useful procedures.

[Ardie1970]

That is exactly what I said to my doctors. I don’t care what their standard of care is. I am not going to die of an infection before cancer can kill me. I also told them they need to re-evaluate their ideas of quality of life.

[jersey-jazz in reply to Ardie1970]

Dear Ardie-- I wish you well and I hope that you get that horrid invader cut away from your otherwise beautiful body. All of our bodies are beautiful. -------- XXX OOO

[Adele_Julia in reply to Ardie1970]

When my breast cancer journey started as Stage 2 in Feb of 2019, I "blindly" went along with a recommended lumpectomy, 4 months of chemo, another surgery to remove lymph nodes under my armpit followed by 10 weeks of radiation that ended in Nov of 2019. All this to have it come back in July of 2020 at the precise same place. To say I was MIFFED would be an understatement. Diagnosed with MBC in Nov 2020 after I forced my original breast surgeon to do a biopsy on the tumor which had burst. That said, I do NOT trust doctors exclusively. Had I know what I know now, I would have changed the script. My first breast surgeon and first onc moved to lovely Sedona, AZ to start a practice there. I was given a second oncologist in Nov 2020 who put me on Ibrance and Faslodex but within 4 months, she wanted to move me to Affinitor when my PetScans were stable and showing regression ! I fired her. I now have another oncologist who "gets me". I'm on the Careoncology protocol, taking herbal supplements to block pathways from Jane McClellands book and course (which is educationally facinating) and I'm in charge. My scans show regression but the wound is still there. My new onc was referred to me by my Cyberknife dude and they work in the same practice. He also referred me to a breast surgeon I'll see next Monday but WAIT, there's more ! I have another breast surgeon I researched myself that I'll see on Tuesday. While it's easy to rely on doctors, my brain doesn't work that way. I learned my lesson and being a self advocate is huge. Big shout out to the ladies here who prompt thoughtful questions, solutions etc to bring into the conversation when I visit with my onc. Ardie, we're both seeing boob surgeons next Monday !!! Prayers to us both!

[jersey-jazz in reply to Adele_Julia]

How would you have done it differently?

[Adele_Julia in reply to jersey-jazz]

Hello Jersey-Jazz ! My apologies for not replying sooner. Good question. I'll do my best to explain my thought process:

1. When I was first diagnosed with Stage 2 breast cancer in Feb of 2019, the suggestion was a simple lumpectomy on the right breast with 4 lymph nodes removed under the right armpit. The lump was the size of a pea. The location was at 3 oclock - meaning if I cupped my right breast, my middle finger would point to the breast bone and the lump was an inch away from the breast bone.

2. I had the lumpectomy and 4 lymph nodes removed in March 2019. One of the lymph nodes showed signs of "external nodal extension" which in my mind of humorous medical terminology, it meant one of them could have "farted" into my blood stream.

3. I blindly followed my first Onc's suggestion to get 4 months of chemo. (8 total sessions - once every 2 weeks). In hindsight, I believe I should have:

a. Insisted on a scan after the March surgery as evidence that the lumpectomy did indeed clear margins.

b. Opted for radiation at the area instead of Chemo out of the gate. Chemo weakens the immune system for both healthy and cancerous cells.

c. Gotten a second opinion regarding options

4. After the 4 months of Chemo that ended July 2019, the suggestion was to remove all lymph nodes under the right armpit. That surgery occurred in August. At that time, I inquired why removing all lymph nodes wasn't done ahead of time in March. Their response was, it wasn't in line with SOC (standard of care) for Stage 2. That being said, I believe in hindsight, I should have:

a. Again request a scan of the body. It was well over 3 months. This was never provided to me as an option. The rationale was at Stage 2, it was NOT in an oncs list of SOC treatment options. Hmph. Knowing what I know now, I would have insisted on it.

b. Requested all lymph nodes removed in March during the lumpectomy.

5. After the August 2019 surgery - the second surgery - to remove all lymph nodes, I was told "Now we have 2 months of radiation". Effectively 10 weeks. Yippee. I blindly did that. 10 weeks ended in Nov 2019. This is after a lumpectomy in March, 4 months of chemo and a second surgery to remove all lymph nodes. That intense radiation darn nearly fried my right girl and armpit off. I have a pretty disgusting picture of that. My onc said "You're good". They threw me on Letrozole and said "take this !" . In hindsight AGAIN, I should have:

a. Requested a scan.

b. Insisted on blood tests

6. I started Letrozole in Nov 2019. Again. I am CANCER FREE ! Covid hit in early 2020. I basically had telehealth meetings with my Onc. After all, I'm BC free. Again no scans. In early May, 2020, a little pimple started forming precisely at the lumpectomy mark. I flashed my boob to my Onc and Breast Surgeon at that time. "It is nothing Julia" ... "Perhaps just a built up of fluid". I am not stupid. This "pimple" in May was not normal. They threw me on an antibiotic. In hindsight, I should have:

a. Insisted on a scan - however it's not SOC for Stage 2 breast cancer survivors

b. I did have a blood test, but should have tested for tumor markers.

7. The little pimple grew to a size of a 1 inch boil and burst. This was August 2020. I had a personal text from my Breast Surgeon. I FORCED FINALLY the decision that "YOU WILL MEET WITH ME". NOW. Drove down to her office - after hours - and she saw this - again thinking there is nothing wrong, and took a simple biopsy right there in her office. In hindsight:

a. I should have listened to my body in May 2020 and FORCED my breast surgeon and onc to do something in September 2020. Should have forced a scan, forced tumor marking testing. I should have not let a year go by without calling the shots.

b. Instead I allowed my onc and breast surgeon to babble on that this "boil/volcano" is no big deal. They were WRONG.

c. Instead, the tumor had already grown back my team of doctors "blew it off". I knew back in May of last year, something wasn't right. I did NOT advocate for myself.

8. November 2020. Ooopsie ! The biopsy from my breast surgeon in August came back. MBC. It's in my right breast with a delightful OPEN tumor now, and the pleural lining. OK.

In hindsight, do NOT blindly follow your Oncologist or surgeon. Know your body and advocate for yourself. Sorry for this long post, but I'm 57, now on SSDI, live in Scottsdale and used to be a high powered Operations executive. I have an MBA, Masters in Electrical Engineering and a JD. All before I turned 23.

Thus I'm detailed oriented. I have a spreadsheet of every single blood test, my supplements, my scans in copious detail. My home office looks like a research facility. LOL. My oncologist is there to serve me at this point. And my current one kinda digs my attention to detail. Well , he used to be an attorney before he went to Med School, thus he understands "Notwithstanding the foregoing, here is what WE are going to do. In the event, you have any concern about consequential or inconsequential damages, then we will follow this path ... So far, this approach has been exceptional.

OK. I've burned everyone's ear. But I agree with MANY ladies. You, your body are your only advocates. Onc's follow a SOC (standard of Care). Take charge!

In closing, one of the ladies on this group is Anne Loeser who wrote "The Insider's Guide to Metastatic Breast cancer. She was my starting point on MBC and how to advocate for yourself. And I thank her gratefully. Download your free copy here, or order it on amazon. What I love love love about Anne is that she just updated her .pdf for Nov 2021. Anne is a beacon in the land of confusion. Virtual hug to Anne.

mbcalliance.org/the-insider...

Blessings Ladies !!! WE got this.

Julia Adele Bode

[jersey-jazz in reply to Adele_Julia]

Thank you, Julia Adele Bode! I am going to re-read this a few times. I Continue to be horrified about your open tumor and hope fervently that you are able to get that horrid thing off you.Frances

[Nocillo]

When I was interviewing a new doctor, I asked that very question. He said he does follow the guidelines of his institution, but also has and will use his judgement in exploring other options in my treatment. I appreciated his answer very much and have my first appointment with him next week. Fingers crossed!

[jersey-jazz in reply to Nocillo]

How clever of you! I wish I had thought of that.

[queeneee]

Complain until you get one that flexes as much as they can within the system. I finally found one I could work with after 'asking for a change' from the first two. He doesn't find my research and proactivity 'difficult'. He gives me my next options, I go away to research and consider.. I share my research with him, and I ask him what he thinks at the next meeting.. often we agree, sometimes he comes up with a better solution. I am scrupulously honest about other things I am taking and frequently ask for metronomic dosing, such that he searches out those options for me. He cannot recommend or prescribe alternatives, but he knows everything I am up to. I am in the NHS UK.

[Jessie55 in reply to queeneee]

Sounds amazing. We are on nhs also. What part of the country are you in

[queeneee in reply to Jessie55]

glasgow... if it doesn't work for you - change it - our lives may be short!

[AvidBooklover]

Right now my MBC is in remission, but I am dealing with dropped foot, which is making me nuts. Have a foot brace, bit still am not comfortable. Being treated at MSK and there is a group including my orig breast surgeon from 2012, the radiologist who radiated my hip with three sessions of targeted rads, a physiatrist, my oncologist and a pain doctor. They are all consulting and working on the cause of this, which has us all perplexed. And how to treat. It may be permanent as cause is still evading us, but we are working on quality of life.

[jersey-jazz in reply to AvidBooklover]

That's wonderful for you that you have a team of doctors that are actually communicating with one another and coordinating their efforts to help you. I think that that is too rare. With me as probably with lots of us, one hand does not know what the other hand is doing. I seem to be the untrained lynchpin that is unequal to the job.

[AvidBooklover]

Trust me, I hear you. I only had three involved and then I asked my breast surgeon from my orig surgery in 2012 to weigh in...and he brought in the radiologist.

[jersey-jazz in reply to AvidBooklover]

That is so good for you. This is all such hard work and I mean to include the mental work as well as the hours spent on the computer reading a lot that you already know, looking for the answers to the questions you don't even know how to form. Today, is the wake. Tomorrow is the burial. I am now going into the kitchen to bake a cake. I think it will make me feel okay.

[AvidBooklover]

They do act like dropped foot is no big deal in the scheme of things...but they are not trying to figure out how to hide this from parents in their 90s who clearly do not need to worry about me and this too. And to find shoes to wear with an AFO. It is all...a lot...even with a good team on board!

[jersey-jazz in reply to AvidBooklover]

Gotcha! Good luck with it. It must be so disturbing not to have the full use of your legs and feet. I have a friend who has had cancer twice but not metastatic cancer. She has a dropped foot and she has no idea how it happened to her. I am of the opinion that these drugs which help us prolong our lives also poison parts of our bodies. I think it comes with the territory. Phyllis wears a foot brace which is hidden by her long trousers. Your parents may not inspect you as closely as you fear. The older we get, the more self centered we get. I think it is a form of self preservation.

[AvidBooklover]

It MAY have been the targeted radiation. I bought Spanx bell bottoms and wore them for Thanksgiving. I literally hemmed them the night before. I typically wear skirts so this alone was a change. But they did not notice. And the last time I saw them I shoved the brace under my slim pants. Now how to deal with THREE weddings in the spring. Palazzo pants? This will be interesting. And I need to design some great looking shoes; the ones out there are so drab. Gold converse sneakers?

[jersey-jazz in reply to AvidBooklover]

When I was going through chemo and lost my hair it had not grown back before I managed to sever my Achilles tendon. Please don't ask what I was doing, going to a formal dinner dance with a severed achilles tendon. I put my fancy shoes on and literally could not take one step. So, I wore my black leather boots and tried to dance in them. At the same time, my wig fell off! Honestly, I imagine that your parents love you dearly and are very worried about you no matter whether or not your foot works. You are so lucky to have parents in their nineties. You will probably be the one of us that lives till that age. I do believe that the scientists will find a miracle drug for us that is not as poisonous as those that they are prescribing now.. Sorry! I'm rambling. It's that chemo brain.

[NPmary]

You are the coolest c h ic. Jersey girl!