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Topic: I made a BIG mistake and it's too late.

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Apr 12, 2021 01:03AM

bigmistake wrote:

There's a long backstory to my diagnosis but I fear this post will be long enough. I hope I'm posting in the right place but I just need to get it out there so bear with me community.

The important bits:

diagnosed w/ ILC on Jan 13 - Surgery March 6 - Pathology rundown: 3cm tumor with 3 out of 7 nodes affected (2 macro 1 micro) hormone + her2 - oh and some DCIS sprinkled in there too GREAT.. not! - Radiation starting next week - Hormone pill after that.

Anyways now my rant and meltdown... after my diagnosis I decided right there and then I was NOT giving cancer ANY space in my life. Nope. I allowed myself to cry once after I was diagnosed and again telling my kids and husband (OH! by the way I'm 48 and have 2 wonderful kids ages 14 and 18 and a husband). I went home, told family and loved ones and made it clear, "I'm not letting cancer have any part of my life!" I never researched other than my basic diagnosis. I didn't want to hear stories, I didn't research support groups, I didn't join Facebook groups or any other forums. I never did any of this because I felt cancer had taken over part of my body and I would not allow it to take over my thoughts. I convinced myself this wasn't going to be a chapter of my life, it was merely a paragraph in my story IF that. I trusted the professionals.

I live in a fairly small town and was treated at a small hospital but I by NO means felt that I wasn't in good hands (until now). Oncologist told me 3cm average tumor I said OK. Oncologist told me lets run this oncotype test to see if you need chemo I said COOL. Test came back 10 "no chemo" said the Oncologist said, I said GREAT!!!. Onto radiation and I considered myself LUCKY. I put said oncotype report in the bag of allll the documents relating to BC I've gotten. Today I got to organizing them and for one reason or another I decided I oughta read more about said oncotype gene test that allowed me to safely skip chemo when from my limited research before I've seen most lymphnode positive patients require chemo.

It was to my SHOCK that I find out this is barely being tested out and implemented for people with positive nodes. This is where the panic and spiraling into an endless searches begins. Can I trust this? Can I even trust my oncologist? I am premenopausal and just ONE google search lands you to studies that say ALL premenopausal women with node positive BC benefit from chemo REGARDLESS of the score. Second, 3cm tumor is more than the average. Third, my oncotype says I have a chance less than 15% of distant metastatic cancer in the next 10 years. One google search away is many studies that say with my tumor size and node status that percent is MUCH higher. Is this test trustworthy for women in my situation? Do top of the line oncologists even use it? Should I barge into my oncologist's office tomorrow and demand an explanation? I really believed all my tests and procedures were top of the line tried and tested industry standard.

At this point plans are set into motion for radiation and I don't have the motivation or even know if its possible to delay things by trying to uproot my whole care into another treatment center. My oncologist never ever made it feel like I had anything to worry about, I would've felt silly asking for chemo from just how much he reassured me my cancer was very treatable with rads and hormone suppressor alone. I haven't even had any scanning yet. All I feel is anger at myself. I'm very very angry that I stupidly didn't research and went along with my team's every recommendation thinking they were up to date and on top of it. I am sorry for my kids because maybe in not doing more and asking for chemo I am taking them away for their mom. I felt safe and on top of it and now I feel anything BUT safe. All I feel like I can do now is lift everything up to god and hope he sees my mistake and gives me a hand at keeping this monster at bay. I hope my kids can forgive me IF I ever happen to become metastatic because I don't think I'll be able to forgive myself.

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Apr 13, 2021 12:48PM 2019whatayear wrote:

Oh okay so they found no primary tumor-

I Hope you get more answers GreekMomma you should have a better picture of what all is going on.

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020, Started Lynparza for 1 year preventative on 7/18/2021
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Apr 13, 2021 12:56PM 1Greekmomma wrote:

Hi bigmistake,

Just the nodes. I had a few enlarged, but only only one without a hilum so they biopsied that one.

I'm sorry you are going through this. What a rock and hard place, huh?

For what it's worth, there are women who throw every treatment at it and still get recurrences/mets, and there are others who have had to quit treatment due to severe chemo side effects and they are doing fine years out from their diagnoses. There is just no guarantee, and I hope you find peace with whatever treatment you end up with.

Dx 1/2021, Right, 2cm, ER+/PR+, HER2- (IHC) Chemotherapy 2/2/2021 AC
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Apr 13, 2021 01:04PM 1Greekmomma wrote:

2019whatayear,

Initially, no. It was/is palpable (feels more like a ropey fibroid than a definitive lump) but did not appear on mammo or US. MRI done a few weeks later caught it. That's why I am leaning to it being ILC. It is also located on the very outer edge of the breast where the lobes are located (has not invaded skin or chest wall, but is right next to both. So close that they initially thought I had bone mets in the ribs but it was just the tumor sitting so close).

If I survive this (and it is my prayer that I do, obviously), it will be nothing short of a miracle. Every delay and mishap that could have happened DID happen. I am still amazed at no signs of mets seeing as it took almost 7-8 months from reporting the lump to finally getting a diagnosis!

Dx 1/2021, Right, 2cm, ER+/PR+, HER2- (IHC) Chemotherapy 2/2/2021 AC
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Apr 13, 2021 01:26PM - edited Apr 13, 2021 01:26PM by Eric9909

This Post was deleted by Eric9909.
Son&Translator . Dx Bellow is Mom’s: Dx 1/19/2021, LCIS/ILC, Left, 4cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Surgery 2/28/2021 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left
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Apr 13, 2021 01:27PM Eric9909 wrote:

bigmistake please private message

Son&Translator . Dx Bellow is Mom’s: Dx 1/19/2021, LCIS/ILC, Left, 4cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Surgery 2/28/2021 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left
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Apr 13, 2021 02:26PM ShyViolet wrote:

Hi BigMistake, I just wanted to pipe in about getting scans. I have no idea what the norm is, I'm very new to this. I was Diagnosed Dec 28th I believe, my biopsy results came back with IDC 2cm. I had my consult with the surgeon 2 weeks later and the plan was to do a double mastectomy and chemo. I saw my oncologist for the first time 2 weeks after that and in those 2 weeks I was sent for a CT and Bone Scan. So to my huge shock when I went to my first Onco appt I was told that my cancer had metastasized to several bones. Complete change of plans and my surgery and chemo was cancelled and I'm now on ovary suppression and an AI. I don't want to scare you, I know you are going through a huge amount of stress and anxiety right now and I don't know how common this is to happen. But I would at least want scans for peace of mind. If we hadn't done those scans we wouldn't know my cancer had already spread. It's all a blur so I can't remember for sure who called for the scans but I think it was the family doctor I was seeing at the breast cancer clinic. My mom recently passed away and my sister and I were seeing the breast cancer clinic for preventative measures and this was my first routine mammogram. I'm also BRCA2 which puts me at higher risk but we were still all so shocked that this happened so suddenly. I just turned 38.

Scared

Dx 1/25/2021, IDC, Left, 2cm, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy 1/25/2021 Kisqali Hormonal Therapy 1/25/2021 Femara (letrozole)
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Apr 13, 2021 04:18PM johnsmom68 wrote:

Hi 1Greekmomma,

I regret chemo because it didn't help me. That doesn't mean it won't help you. Taxol was not as hard for me as AC. I think you need more details before you decide to skip Taxol. I would ask what type of cancer you have. Ask why this regimen? I went to UNC-Chapel Hill for part of my care. They had an amazing nurse navigator. If your hospital has one get know that person. They can help answer questions. Mine even helped me get an appointment sooner.

I know ca 15 isn't the be all end all test but I would love for my tumor marker to be 12 like yours. That sounds promising. Sorry you even have this to worry about. You deserve answers about your disease so you can make informed decisions.


Dx 12/23/2013, ILC, Left, 5cm, Stage IIIC, Grade 3, 22/23 nodes, ER+/PR+, HER2- (FISH) Chemotherapy AC + T (Taxol) Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant) Surgery Lumpectomy; Lymph node removal: Underarm/Axillary; Reconstruction (left): Stacked DIEP flap
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Apr 13, 2021 06:51PM 1Greekmomma wrote:

Johnsmom68,

I see. Yes, I would feel the exact same way, going through 6 months of chemo only to have it metastasize later on.

I think that taxanes are now just "the standard" if you are node positive, and have an advantage in TN/Her2+ cancers. There's a mixed bag of studies when it comes to taxanes and ER+ cancers though. And if, as you said, some countries don't treat ILC with chemo at all, that makes it even worse!

I wish I were in a larger city so I would have more options. I go to a cancer center that works in conjunction with the local hospital, and does trials with MD Anderson. I think they are ticked at me for asking questions though. I brought up fatal reactions with taxanes with my onc, who dismissed them as happening "maybe in the 90s" (of course I have found studies that show, albeit rare, that they do happen, and not just "in the 90s"). I know doctors hate when patients go to Google, but doctors don't know everything either, and my onc is a general onc, not a BC specialist. I think that would make a huge difference. I don't want "the standard", I want what will work for ME. I don't think that is unreasonable for anyone to want.

I think you said you were put on hormone/ovarian suppressants during treatment? I was not. So here I am with an ER+ BC with no ovarian suppression at all. No chemopause. Period on time like clockwork.

After reading all the posts, and the different treatment options out there, I feel like I'm in the stone age when it comes to mine! Gah!

Dx 1/2021, Right, 2cm, ER+/PR+, HER2- (IHC) Chemotherapy 2/2/2021 AC
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Apr 13, 2021 07:24PM exbrnxgrl wrote:

Ladies,

I don’t mean to intrude but wanted to comment on scans, relative to shyviolet’s post. Roughly 6% of bc diagnoses are de novo stage IV. I do not have a figure for how many of those were asymptotic or briefly thought to be lower stage but it clearly less than 6%. So, a situation such as yours is not common. It might seem so because we have all read of similar experiences here on bco but we are a group of people who already have breast cancer and are having problems in many cases. It doesn’t make sense medically or financially, particularly in the US, to spend thousands (a PET is about 5 grand) and expose patients to more radiation just to look for a unicorn.

Lest you think I am unsympathetic or grumpy, my own bone met was found incidentally on an unrelated PET a mere 6 weeks after my bmx. It is a very long story involving a clinical trial and a pneumothorax among other things but I don’t credit that for my long term survival with mbc. I do credit the scan for saving my life because it also showed a complete pneumothorax of my right lung and I had no symptoms! Like I said, it’s a long story. To get back to the original point, what you and I have experienced, zero to mets in an instant, is not common. I’ve been at this for almost ten years. I wish you all the best.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Apr 13, 2021 08:42PM - edited Apr 13, 2021 08:43PM by kathabus

I don't think you're grumpy or unsympathetic, LOL. You are right with what you say, but I do want to add something....

This post is about not doing chemo with a positive node. So in this situation, we are saving waaaaaay more money than the cost of a scan. And I don't think it's unreasonable to request a CT scan JUST to make sure we're making the right choice. Because when you're in this situation, it's a BIG choice. Our cancer has already started to locally metastasize and we don't know how far.

In my situation I had 1/1 node positive and we don't go and get more. So I needed that confirmation. I could have had 15 positive nodes. I had no idea. So to get a CT scan before radiation....didn't seem unreasonable to me or to my team.

I get your points 100...just wanted to add this perspective.

Diagnosed at 43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/20/2020 Prophylactic ovary removal Hormonal Therapy 8/20/2020 Femara (letrozole)
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Apr 14, 2021 07:46AM TXLorelei wrote:

I also have ILC and had my Mx and lymph node removal on April 1. I already knew from an MRI that I had “multiple” enlarged nodes and a biopsy came back positive. Yesterday I got the surgical pathology results and everyone (including the doctors) were surprised that 26/26 nodes were cancerous. Lobular is so sneaky

Now they’re going to schedule me for a PET scan as a double check. I had CT and bone scans last summer that were clear.

They’re also changing my treatment plan to include chemo - AC & T. They did give me the option of continuing with the letrozole only, but with that many nodes, I don’t want to risk it.

Dx 7/7/2020, LCIS/ILC, Right, 5cm, Stage IIIC, Grade 2, 26/26 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 8/12/2020 Femara (letrozole) Surgery 4/1/2021 Lymph node removal: Underarm/Axillary; Mastectomy: Right Chemotherapy 5/21/2021 AC + T (Taxol)
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Apr 14, 2021 10:16AM - edited Apr 14, 2021 10:17AM by DivineMrsM

I'm going to make a few comments. First, bigmistake, I only know you through your several posts you've made on this thread you started. And it sounds like the information and advice shared here is helping you. But I want to say in the nicest way possible, please, please do not be so harsh, so angry at yourself that you “stupidly didn't research and went along with my team's every recommendation thinking they were up to date and on top of it."

You've been through a lot in the past few months. Because of that, it is even more important to practice self-care, and that includes self-kindness. In fact, google self-kindness for tips on how to incorporate more of it into your life!

Society places so much pressure on women to do everything perfectly: marry the perfect guy, raise perfect kids, have the perfect career, and by all means, have the perfect body, hair and clothes. And now we have to arrive at the perfect treatment plan when we're diagnosed with a devastating disease?

Society also insists women take care of all others first and then mmmmaybe take care of themselves. Please refer back to the paragraph on self-care and self-kindness!

My situation is different from yours as I was diagnosed with metastatic bc from the start. But I had such fear that I never looked at any of my scan reports, surgery reports or even bloodwork results for several years after I was diagnosed! I simply could not go there! I listened to my oncologist and breast surgeon; that is one way I coped with the disease.

And I'm still here 10+ years later! Eventually I toughened up and got copies of all those reports, read them, and keep up with all current scans, ect. One thing I've learned is there are many approaches to treating this disease and no one fail-proof way to do so.

I've had some of the best times, best moments of my life since that mbc diagnosis, not because of it but in spite of it. I well remember initially claiming bc was not going to interrupt my life. I had to get over that idea. Again, as women, we're almost conditioned to minimize our experiences so they don't intrude on our loved ones' happiness, heaven forbid we inconvenience others. Bc does not have to be all-consuming but it is okay to give your life, and your body, the time and space and attention it needs to treat the disease and if necessary, to recover from those treatments. Your body has taken a hit. Take the time to nurture yourself back to health.



found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Apr 14, 2021 10:40AM DivineMrsM wrote:

ShyViolet, it really sucks that you are so young and diagnosed with metastatic bc. I hope you’re able to get some support from this forum. Please check out the stage iv section for more insights.

*****

A few more comments. I realize this is all anecdotal, but after reading the posts here, I’m going to share what’s been my personal experience.

Is chemo less effective on er+ ilc? It was very effective for me. Please note I was diagnosed metastatic to the bones from the start. The gnarly growth in my breast was over 2.5 x 1.5 inches (I do not understand cm well, so I always convert to inches). (Btw, I found the lump 10 days after annual mammo). I had neoadjuvant chemo—that is chemo prior to surgery, and it shrunk the tumor by quite a bit. I was then able to have a lumpectomy. Since I’ve had what’s considered exceptional response to treatment being 10+ years out from diagnosis, my belief is that the chemo was beneficial to me.

Do taxanes cause mets? I have never researched it. The chemo given to me was Taxotere (a taxane) and Cytoxin. For me, it worked well.

found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Apr 15, 2021 12:02PM rollercoaster451 wrote:

Hi Big mistake,

Did you do any genetic testing? That would be something to ask about.

DX 12/20: tnbc 1 cm, dcis 5cm, double MX 2/21 Dx 12/2020, IDC, Right, 1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR-, HER2- (FISH)

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