If you are a breast cancer patient or know one or love one then you might know that there has recently been some new developments around how to stage breast cancer. I had heard of these changes a few months ago but did not have the courage or interest in looking it up - partly out of fear- whenever you google stage 3 cancer (go ahead, I will wait) you see things like “72% 5 year survival rate” and you can sit here and worry about which slot you fall into - the 72 or the 28… so I am very leery of googling anything as I think everyone with any kind of symptoms or illness is because you google and Dr google tells you “that's not good”.
When I heard about the new staging, I also heard that anyone who was already staged would not be re-staged but I am currently not sure if that is still the case. I was spurred on to look into what my new staging would be after seeing an IG friend @mycancerchic (www.instagram.com/mycancerchic) story where she recently presented for an organization (hey anyone need a speaker in the tri-state area, check me out here) and while there met with a surgeon who had the “cheat sheet” so to speak of staging. Anna found out she was now a 2A whereas she had been diagnosed at a higher stage. This got my thinking and moving so last night, I spent a few hours tracking down some resources.
Yes, a few hours. You see, the staging change is recent so a lot of information out there is still on the old information. Plus, I did not want to use just any link, I wanted it to be a trustworthy source.
I am sharing here what I found with instructions of how to re-stage yourself but remember, I am not a doctor so you should consider asking if this even makes sense to do for you and your health. I am a nosy wanna know it all so I had to check it.
I had to use my pathology report (readily accessible on my MYMSK app but for other people might be in a folder you got at your pathology meeting and do not know where it is)... You need that report to figure out the new staging. I found that my “tumor” was a T3, meaning it was larger than 5cm (there is also a T4, I will get into that in a bit). I also had to see what my “N” rating was - this has to do with node involvement and for that I was N2A as I had 5 nodes out of 25 test positive for cancer.
At the time of my surgery, December 2016, this made me stage 3A. I knew, though, even then that if my tumor was 5cm (instead of 5.6cm) and if my node involvement was 4 instead of 5 that I would have been a lower stage. This was disheartening, especially because I was proactive and did yearly mammograms, had no lump, family history, etc and in April 2016 all I had were “microscopic calcifications” that had 98-99% chance of staying benign and my local hospital had spoken about me probably being a stage 0 or 1. Then, bam, stage 3A, what’s up. It is of course just a number and it is infinitely better than stage 3B, 3C or (God forbid) 4 but it was still shocking to have that out of nowhere happen to me. I got over it quick though and went back to smiling and dealing with it.
Now, though, with the new staging guidelines, my T3N2A GRADE 3 (highest grade, of course, just like in college this 4.0 only knows how to do the “best” but in this case, of course, it is the “WORST” as this means my cells were all kinds of fucked up) and with my ER/PR Positive, HER2 Negative information, I am stage 2B.
Not a big difference you think though as Stage 2 only has A and B but the 5 year survival stats for Stage 2 is 93% versus stage 3’s 72%. That is a big fucking difference. Now, as most of you know, I live my life as though I am cured anyway so I do not get bogged down in the potential for disaster BUT of course I have my moments where it hits me that the clock could run out before I hit my last shots, before I get to see my kids grow up, before I am ready to say “OK, I have done it all and am ready to meet my maker.” You know what I mean.
So this is a huge jump and of course, I know that with the re-staging I just did to myself, there is no medicine behind it - as in, I am not sure if I would ever officially be re-staged by my medical team or if this is even valid but in my heart it is something I just know to be true so who cares who confirms it?
So think about it if you re-stage yourself, it might not officially mean anything but it is interesting to see especially for those of us staged within the last few years - I mean, I was staged December 2016 and these new stages came out in December 2017 so it was real recent.
These are the resources I used - you need to go to the Cancer.org site to figure out what your T and N means given these new classifications and then take that information along with your cancer type (hormone, HER2, etc) and Grade (1,2 or 3) and then go to this Komen page and find your “new” stage.
So, what happened? Up or down? Again, please note that I am not a doctor and I do not play one on TV so if you need any help or have questions about what this staging means, ask your doctors and expect them to say it might not apply to you as you were staged before the change.
Thanks!! This is what I do in the time between...
A year ago today was my first meeting with my oncologist at Sloan. Before that, on December 29 2016, I had the meeting with my surgical team to go over the results of my pathology. It was overwhelming and although I already knew I had lymph node involvement (we were told as soon as I woke up from my mastectomy on December 16), it did not really compute, you know? I mean, I knew that meant I needed "chemotherapy" but I had not a clue what that meant at all.
Ah, ignorance really is bliss. I knew it was big and I knew it was something I had never ever envisioned myself doing...like ever. I think, though, this is true of all of us no matter our family histories or our backgrounds, "risk factors" or lack thereof, etc. No one expects to be told they have cancer and no one WANTS to get chemotherapy. No one.
I felt my oncologist's pain as she sat with us a year ago today for almost 2 hours (or more maybe) going over all of the ins and outs of what chemotherapy I would be getting, why I was getting it and about the side effects and how to help/manage said side effects. She wrote everything down for me in amazing handwriting, filling pages of information for me. It was an amazing appointment and one that without the written notes she wrote down for me, none of it would have sunk in.
At this point, I was working full time as a teacher, I even went back to work early after my surgery to be back to "normal" as soon as possible. It was a relief to have the cancer out of my body and I knew deep down that this whole chemotherapy thing was going to stop me from being "normal" and I was scared shitless. I had no one really to commiserate with other than my angel, my sherpa, who Sloan connected me with who quite frankly saved my life with these --> tricks-for-treatment.html for chemo.
You see, chemotherapy breaks you down. It strips away your hair, your dignity, your brain, your ability to "do anything" so that your body can ironically heal. It is quite confusing and I know there are a lot of people who are pressured from family and friends to forego chemo and instead to lick a unicorn but really, chemotherapy is one of the best tools out there to hopefully kill cancer cells.
When I began chemo a week after my first meeting with my oncologist, I was prepared and yet totally unprepared. You see, no one knows how their body will respond to these drugs. As someone who rarely took an advil, who didn't drink, who never took drugs, well, this was all uncharted territory for me. (And yes, I know I'm a square... I don't even drink coffee... what a dweeb. I mean, if I knew I was going to spend the big 4-0 getting pumped full of all kinds of shit, I would have imbibed a hell of a lot more.. .or period lol).
I survived chemotherapy and I worked full time during it but I could not do much else. I was not able to care for my children, to cook, to clean, to really move beyond that school bell at 3pm when I went home from work and just became a vegetable.
It was hard as shit. I was told I would have support, that everyone would be there for me but the thing about chemotherapy is that it strips you down to nothing. No matter who is "there" or not, you can barely notice. You are just functioning at the barest minimum. Still, I worked. I got up each morning, put on my wig, my lipstick and went to work. As a teacher, I was exposed to germs, the flu and more. Luckily, I did not run a fever during chemotherapy. I did learn how people can be nasty and heartless. I let it go here --> an-open-letter-to-me.html.
If you are here, at your first oncology meeting where I was a year ago today, you got this. Trust in your self, in your body. Do what you need in order to survive this process. God willing, you will never need to do it again ever. Remember, though, our sisters and brothers for whom chemotherapy is an endless routine to keep them alive. Pray for them. Pray for us, all of us, that a cure will be found. In the meantime, drink lots of water. Rest. Listen to your body and read and share my post about treatment tricks (link below). This is what I do in the time between...
URGHHHH - I am in such a bad mood right now! (That I am reading this and writing it really like a teenager... sorry for that, I had to VENT and with my last name being Vento, you would think I would be used to this...) My bad mood, though, it has to go away - I have to come to grips with the things that are bothering me.
1- No one picks up after themselves -- this is getting ridiculous. I have 4 other people and a puppy in this house and not one of them picks up a dang thing. Yeah, that's right, I am calling out my puppy. Just because he is so cute does not mean he is exempt!
2-No one cleans. This is just something that makes me crazy - everyone has eyes and can see the kitchen is a mess, the bathrooms need scrubbing, the groceries need to be put away and organized but yet, I am the only one who does it. My husband knows I want a clean house for my birthday tomorrow but I guess it is coming after I clean it -- URGH!!
3-My oncologist does not agree with my supplements. This is a big one and probably the trigger as to why 1 and 2 bother me so damn much today. I met with Sloan's integrative medical doctor months ago and was kind of left wanting more. The appointment was fairly brief, I was given 4 supplements to take that I think everyone who meets with him is given and I was told to lose my belly fat.
I lost my belly fat and then some and now I wanted to explore other ways in which I can keep my body as inhospitable to cancer cells as possible. No matter what, even though I did my surgery, chemo and radiation, this does not mean I am "cured". It does not mean that I will never get sick again or God forbid die before my time due to the word "cancer".
I believe in doing anything and everything I can to avoid this happening to me to my family and just in general because I am not done skootching the shit out of everyone in my life yet. I sent over the list of vitamins and supplements the nutritionist and I decided on - and read, he and I decided on them. I had done my research and knew something and he knew a whole lot more than me. Before setting me up with said vitamins and supplements, he met with me for an hour and a half, sent me for very specific blood work and then after the results were in (3 weeks later), we met again for an hour and reviewed where my blood is "lacking" and what this means on a genetic, cellular and cancer-hating level.
My oncologist's office called today to say that she does not approve of me taking these supplements except for the few prescribed by the integrative medical doctor at Sloan integrative-medicine-clinical-trials.html. I would never criticize Sloan - I love them and think they saved my life. However, they are known to be traditional and not as forward facing as maybe other hospitals.
I hate to feel as though I am gambling with my future, my health but really that is what life is - life is a gamble. One never knows what will happen in the future. I was not given things that are "radical" or "unproven"; I was given supplements like Vitamin D, Magnesium, Vitamin C and some other items which I will write more about later when my brain calms down.
All I want for my birthday (tomorrow) is a clean house and some further conviction in what I want to do to treat my WHOLE BODY not just the breast that got me into this mess and is now gone. How can I keep my whole body as inhospitable to cancer cells as possible both through modern, western medicine, nutrition, supplements, what I eat, how I manage stress and all that all the while knowing that everything can be futile that there is still that unexplained 1/3 of early stagers who wind up with stage IV cancer.
It is a continuum both health and life. We make choices and we have no idea what the end result will be and I felt the same uncertainty and worry when I decided to sign up for the clinical trial through my hospital and yet when I found out I got the pill and not the study arm without medication, I was at peace lets-get-clinical-clinical.html.
Right now, I am looking for peace - the ability to be at one with my decisions. That these supplements and vitamins that I am supposed to take for only 3 more weeks (total of 4 weeks; one is done already) will not harm me and will instead help me.
I also hope for a clean house tomorrow, to shake my cold, to experience joy and gratitude right now and tomorrow for the passing of a year that was one hell of a freaking year and to all good things ahead.
Deep breathes and all that -this is what I do in the time between.
Do you take additional supplements in addition to your oncologist "approved" medication? You can check out my About Me page to see what else I am on... About Me.
I am using my YouTube channel more and more to have dynamic content - I love to write but I also love to yap - I speak so much that my middle brother did not speak until he was 4 years old - when asked by doctors and therapists why he did not speak before he said, "I did not have to - Lisa spoke for me."
Now, I am speaking for those of you with breast cancer, those of you lost and afraid. It is normal to be afraid but do not linger in the fear. Kick yourself and smile - we cannot predict the future nor can we know when our time will come but we can trust our doctors, enjoy our days and hug our children. Every day we can do that is a win in my book. Stay smiling!
This is what I do in the time between....
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