Scared and alone. Please help.

Bossmom, MRIs see a lot more "stuff" than mammograms do, and most of those are nothing. Additional masses might mean you need a mastectomy rather than lumpectomy, which is what happened to me (2 separate tumors in left breast), but it didn't change my prognosis at all. Because you have cancer, radiologists will make note of and flag every little thing they see. I ended up needing a fourth biopsy due to something found on my MRI, this time in my contralateral breast, and it was benign. I too had CT and bone scans, and ended up having a fifth biopsy, this time on my thyroid, and it too was benign. I was an emotional wreck, but once treatment started I was a lot better. Your oncologist needs all the information to make the best treatment plan for you. My lab doesn't do Ki67, which bugs me, even though I know the results aren't really very useful.

bossmom,

I have been thinking of you as you go through what is without a doubt, one of the roughest times in bc diagnosis, which is waiting for ALL the information to be confirmed and available to your doctor and to you. I’ll go back to my puzzle analogy.

Right now, you have some of the puzzle pieces. Some are very important in and of themselves, such hormonal profile. Others may or may not be as important on their own but depend on their relationship to the absence, presence, or magnitude of the other pieces. Each piece has a story to tell, but any given individual piece is likely to present an incomplete or even insignificant view. When all the pieces are present and viewed as a whole, then you get the complete picture and your mo will create a treatment plan based on that. Looking at one piece, like Ki-67, in isolation tells you very little and has been said, it’s considered by many to have little overall value.
Breast cancer is a million times more complicated and subject to more individual variations than I could have ever imagined. Please have faith in your doctors as they wait for all info to become available, evaluate the whole situation , and then develop a treatment plan. Take care

I am 100% in favor of second opinions and changing doctors if needed! In her defense, at least partially, she is a surgeon not an oncologist. She is not the person to answer questions regarding stage, HER2 low* or anything else oncology related. It is outside the scope of her expertise, even though she is a doctor. I know your anxiety is high but breast cancer is simply not an emergency and use of the few machines they have to do scans has to be balanced between emergencies and scheduled scans. Many facilities have limited , often only one or two, of these astronomically expensive machines. Please avail yourself of anti-anxiety meds as needed. It was negligent of her not to have addressed your mental health questionnaire especially if she was aware of your anxiety. If you are not comfortable with her consider switching but I will add that your relationship with a surgeon will be brief as most of your care will shift to your mo after the post surgical period.

Breast cancers tend to be very slow growing, even some of the more aggressive types. They simple do not grow and spread quickly like an infection. It may be a bit of a mind shift but that is the reality of bc so please banish the growing/spreading quickly thought from your mind! As to the Ki-67, again, may not be accurate, not used by all cancer centers, and NOT a major piece of the puzzle. You are giving an enormous amount of importance to something, that while a piece of a bc diagnosis, is relatively minor and not universally used.
* HER2 low is fairly common. I am also HER2 low and that had no bearing on my treatment, but that doesn’t mean it won’t having any bearing on others tx. There was a clinical trial to see if some drugs used for HER2+ patients would benefit HER2 low patients. I don’t know if anything came of it or if it is still ongoing.

Bossmom - I'm going to add a bit of a twist here, although I think that what you've been hearing from others makes sense and is the "norm" or "usual". Do go for those 2nd opinions and seek a doctor that you feel reasonably comfortable with. When I was in your situation, I researched online, the local surgeons, and found one who was on a "best surgeons" list that was very close to me. (I live in a large city and there are numerous medical places and doctors, but I really only wanted to go to my nearest hospital 10 minutes away.) I had been given an appointment with "the next surgeon" on the list by the doctors who initially diagnosed me, but I called the office of the surgeon I wanted (same medical facility) and they switched me to an appointment with him. He turned out to be fabulous and was very kind and accommodating, unlike the surgeon you met with. I was actually too new at all of this to have many questions, but the ones I did have, he answered. He did the biopsy, and even came to see me in the ER at one point to deliver the results, because he noticed in the system that I was there, and he highly suspected that one of the reasons I'd gone to the ER was my "freaking out" waiting for the biopsy results, and he was right. He had tried to call me and couldn't reach me at home, so had checked in the system to see if I was there anywhere. He also personally made the referral to the oncology department and he personally went over (this was one small campus) to the radiology place and made the initial CT and bone scan appointments for me! He told me exactly where to go and who to ask for, etc. I had no idea what they were at the time, nor did I have the mental presence of mind to really be able to do it on my own. ( I didn't have the help of a husband, and be really glad that you do!). He saw and guided me through all of the initial stuff, and then after I was done with neoadjuvant chemo, he did the surgery, and continued to follow up with me until he retired about 18 -24 mos after my initial diagnosis. I developed some lymphedema in my arm after the surgery, and he is the one who noticed it (in 2 seconds, and it's mild) and made the referral for me to get it treated, not my oncologist. He was the one who followed up with all the lymphedema issues until he retired, and his partner actually continued with it for about another year. My oncologist barely acknowledged it. My new oncologist, however, is very attentive to it all, and I haven't had surgery follow up for years now.

My point here is do shop around. There are some really good and caring doctors out there who actually provide "care" and not just "treatment". Ask around, read around, get personal referrals. If there is anyway you can get staff at your medical facility to tell you who they'd go to or send family members to, do that. It's not always easy to get them to talk (understandably). I did find that my surgeon was indeed the "go to" surgeon for most of the people who worked at the medical facility. I really lucked out and I know that this doesn't happen to most people, but do check around and I'm sure you can find someone better than the one you saw initially. Wishing you all the luck in the world!

I would definitely echo to shop around if you want. I will say my surgeon was very responsive and kind. Luckily I met with both her and my oncologist the same day so anything she didn't feel qualified to answer was easily taken care of in the next appointment. But to be quite honest, there wasn't much she didn't answer. And she has never acted annoyed with me or anyone I brought with me. Ever. At my NCI hospital I have been treated kindly and with respect by everyone. You deserve that, too, so if you feel uncomfortable don't hesitate to look around.

bossmom,

Three cheers for some forward movement! I can’t answer your question with specifics but I do know that neo-adjuvant chemo has become much more common in recent years. Additionally, no two patients are alike, even if they look like it on paper, and doctors have different approaches. This would be an excellent question to ask your mo. Does she use email? That or a short phone call might help ease your mind. I know you continue to worry about Ki-67 but remember it’s not of major significance and many MO’s don’t even test for it because they feel it has little to no significance. Try to look at it from that perspective and know that it’s not worth stressing out about. Take care

I had the same treatment they are prescribing for you; neoadjuvant AC and then Taxol on the same schedule. It was because of my tumor size. My facility doesn't do Ki-67 and they told me they used to do it years ago, but only really just to determine if someone needed chemo or not, and they said that in my case it was a "no brainer" anyway, that I would need chemo, simply from the tumor size (abt 5 cm.). I am ER/PR+, HER- and so not triple negative. I'm really sorry you have to deal with this, but as they say, it is "doable" (sounds cliche, but true).

Hi Bossmom
I was stage 3 grade 3, 11 positive nodes, big tumour in right breast, hormone positive. Not good news at all but I did all the treatments and am now over seven years since diagnosis. I remain on anastrozole. You’ll get through this.

Hi Bossmom - I was officially diagnosed in the fall of 2018. I had the biopsy and got the ER/PR+, HER- status and approximate size at that time. Then I had all the scans that showed no spread at that time. Then I got the neoadjuvant chemo starting in January 2019, for the purpose of shrinking the tumor, so that surgery would be better/easier. I did that probably through early June, then had surgery (left mastectomy) in July of 2019. My tumor had shrunk quite a bit, but was not what they call a "PCR", as that's more of a triple negative thing, and then got further results regarding tumor bed size, node status, etc. I continued to have no nodes and no spread per the surgical pathology results. I then had radiation (proton) in the fall of 2019, finishing up in late November, which allowed me to have a very nice Christmas and New Year. My oncologist had wanted me to start Letrozole (an anti-estrogen or "AI") in mid December, but I refused, saying that I wanted a nice holiday. I waited until early January 2020 to start it and have no regrets. I chugged along for 3 years that way, with no problems except for the Letrozole side effects which were not always fun, but again "doable".

I'm sorry to have to tell you the next part, but in January of 2023 I went to the ER with some back pain, they did scans, and saw that the cancer had spread into my spine, ribs, and sternum, so I unfortunately became stage 4 at that time. I've been on the stage 4 drugs Faslodex and Verzenio now for about a year, and like all these drugs, they are not fun, but I'm getting through it and am still here about 5.5 years after my original diagnosis. There is a person on this site known as "Shanagirl" and she was diagnosed with a similar situation back in 2013 I believe, and she too became stage 4 in January of 2023. You can see though, that she had about 10 years before becoming stage 4, while I only had about 4 years before that happened. There are others who have had even more time, so it is a very variable thing and there is no way to know or judge what might happen down the road. Just know that you could have many, many years with your current diagnosis, and even if it progresses to something more (it might not at all), you could still have many more years.

You just have to take it one day at a time (another cliche, I know, but again a true one) and "go with the flow". Do the treatments as they come, enjoy your life as best you can each day, and just deal with things and cross those bridges when you come to them. This is as they say, "a crap shoot". Take care of yourself, enjoy those kids and your husband, and just take things as they come and continue doing what you can, what you love and enjoy on a daily basis. You will get to a better head space here at some point for sure.

Hi bossmom, I, too am so glad you have a plan in place; it takes some of the anxiety off the waiting. And you can start preparing yourself for what's ahead. As you go through the process, keep asking questions, but remember every person and their breast cancer is different. Concentrate on YOU and what you can do for achieving the best outcome for YOU. Big hugs and wishing you all the best going forward.

bossmom,

I’m sorry to hear this. Unfortunately, none of us can’t venture a guess as to what it might or might not be. What does your mo suggest as a next step?

{{{Hugs}}} I was wondering how you were doing. I’m so sorry you’re going through this, and I hope it’s just a scare.
There is ALWAYS hope. I’m going to be praying hard for you. I have an in-law with growths on the liver, and they’ve stayed benign. My mother had a couple too, which stayed benign even, though she had another cancer. But I get you about the breast cancer part making it concerning. I hope you get answers fast, and they’re good ones. Are you getting treatment yet?

I have had a couple of hypodense masses show on my liver once in awhile, and then at other times they don't show. The radiologists and the oncologist just note them, and continue to call me "bone only" re my metastases. They apparently see no reason to do a biopsy. To answer your question of "is there still hope?", the answer is yes! Just keep reading about so many of our experiences here. It is really hard, no question about that, but we all sympathize and are here to help. And again, there absolutely is hope out there.