New here-Overwhelmed and not feeling brave

EastcoasttoWestcoast

Hello-Im new here-and per the subject line feeling very overwhelmed. Im trying to make sense of the overload of information I have received and the lack of questions my normally questioning self has not asked along the way.

Briefly, I was diagnosed w/ Stage II IDC w/a 26mm tumor, and with 3 additional tumors I know nothing about as they were not part of my 11 biopsies they took and tested. I have 2 known lymph nodes involved.

I recently met w/ the surgeon who gave me a bit more info-It is a grade 7 on the Nottingham scale and of intermediate grade, but my KI67 was "high" which makes it faster growing in nature although I asked zero questions. Denial is strong. Def recommended mastectomy which is what the diagnosing doctor also advised.

I have a PET Scan on Monday to confirm it hasn't gone past my lymph nodes.

Surgeon advised one of my lymph nodes is more cancer than node and she doesn't feel its a good outcome to proceed w/ surgery w/o shrinking the node, so now Im waiting for oncologist appointment for that treatment plan. She felt that oncologist would want to know what the other 3 tumors are as they could be benign, cancerous, or could even be a different kind of cancer. She gave me all sorts of timelines that I didn't feel were relevant as it all was dependent on the type of treatment the oncologist was going to want, but didn't think surgery would be happening for 6-9 months, possibly longer.

She also seemed to think I would need another ultrasound and/or MRI but again-stupid, I didn't question, but now do not understand as I JUST had both done at the end of July before I was diagnosed.

I know none of us are future tellers, but there are so many knowledgable and strong woman on here-and am wondering if anyone might have any insight into why all the tumors weren't biopsied at the same time and why they would possibly want to give me another ultrasound/MRI? I feel like the appearance of my breast has change dramatically in a very short amount of time, and am concerned with that as well. I also feel mad, annoyed, disconnected, scared and not brave at all. Im trying to have a positive attitude on the outside and am hoping my inside catches up.

I also wondered if anyone has experienced node shrinkage? I've lurked for over a month but don't recall seeing anyone with story. I also wondered if I could do hormone therapy (pills) only for this..I realize I need to dial in at some point, and maybe joining and becoming official here is my start.

wondering44

Hello EastcoasttoWestcoast,

Sorry you are here. You are right that it is overwhelming. It takes time. Taking time is okay. Some need more time than others to ask questions. It is okay you are in shock and have not asked questions. Each person deals with it the best way they can. It is okay to feel how you feel…overwhelmed, mad, disconnected and all.

It takes more time than you want to get all of the answers for tests and results. Getting with an oncologist to get a plan in place helps tremendously.

I had mammogram and ultrasound which showed the mass. The biopsy confirmed cancer. The MRI found two additional masses and more DCIS. It was not recommended for me to to additional biopsies due to risk of spreading cancer and additional biopsies would have to be MRI guided. I did CT scan for pelvis, chest, and abdomen. Also had a bone scan. All came back good. The wait to get the scans was stressful. The results were a huge relief.

Talk with the oncologist about what treatment plan will work best with your cancer. I have found each doctor can have a different idea of the treatment plan and results. It is a lot to go through. I have found that throwing everything at my oncologist has been best for me. She has given me the best answers and relieved me the most from stresses during different opinions at appointments with other doctors.

My thoughts are with you.

Esther01

EastCoasttoWestCoast,

I'm so sorry you find yourself joining us here, but you are right ... these ladies I"ve met here are some of the strongest, bravest, sassiest, loving and informed women who have ever walked this path before us. Wondering is right... when we are in shock, our brain doesn't think to ask the questions that we have. At diagnosis, my brain shut down like an overheated computer. I had to pamper my brain those first few weeks and be really easy on myself to help my mind catch up to my new reality- cancer - but it did catch up and I started feeling like "me" again.

I recommend writing down your questions and carrying them in with you or having them right there on your computer screen when you call the doctors. I typed everything they told me so I could read it again later.

Yes. Lymph node involvement can shrink back. It did with me! In December, I was diagnosed with Stage II IDC and two lymph nodes involved, and also ER+/PR+/HER2-. They began me immediately on hormonal therapy (tamoxifen) to try to shrink back the node involvement ahead of surgery. Doctors in Europe are doing this more and more, and it's finally catching on more in America.

And it did shrink. The main tumor shrank more than the node involvement. It was palpably smaller. Overall, they had me on hormonal therapy for 5 months, then surgery. I did not mind waiting because they check the progress with an ultrasound every 4-6 weeks to assess how well the hormonal therapy is working. They may do the same with chemo. I don't know if they will suggest advance hormonal therapy or chemo, but there are options that don't include immediately going into surgery, and they will share each one with you and help you make these decisions.

We will be here for you. Please keep posting and connecting. It is amazing how often someone has walked the path on which you find yourself, and there is much comfort in that.

Love and blessings,

Esther

EastcoasttoWestcoast

Hi wondering44-

Thank you for your kind reply and validation of my feelings! I guess Im finally feeling guilty about not being my own advocate and educating myself as much as I should be, so thank you. I have a stupid question that IS stupid! In your signature you reference the stages - this is equivalent to my stage II or this is o only in relation to those specific masses, which is what Im thinking. I don't even know my stage, nor my grade. Sigh..Like you said, all in time.

I had a mammogram scheduled for 8/6-but found a spot on. the bottom of my misbehaving boob about a month prior. Made an appointment w/ my PCP and had a 2 week wait, and in that time felt obsessively and found the lump which turned out to be IDC. I already had some slight pitting, etc, so I kind of knew. I was a BIRADs 5 after the ultra sound, had an MRI 2 days later and the biopsies, and diagnosis two days later. In that time In between the MRI & biopsies and diagnosis I turned 48. Quite the birthday.

Im def concerned the other tumors are a diff kind of cancer-just seems strange my boob has changed so much in such a small amount of time. I feel like the MO might want to be more aggressive w/ treatment based on the high KI67 score which the surgeon sort of hinted at but from my reading on here it seems chemo isn't that common for HER2- I liked my surgeon, oddly enough she is currently treating my 82 year old mother in law, and I trust her decision to not feel surgery is the best option right now, but never thought it would be over a lymph node and not the tumor itself.

Thanks for the kind welcome!

EastcoasttoWestcoast

Hi Esther01-

You described how I feel at diagnosis perfectly, I laughed at the overheated computer comment but its the truth! My husband is beside himself because I am not asking 10,000 questions when he is usually patient with all of my questions about anything and everything in this life! He never thought he would miss all those questions but he misses the answers now!!

Im also thankful you shared your story and was interested to read it. I didn't know it was a thing in Europe, are you located there? Comforting to know I am not walking this path alone on so many levels. I have a feeling I may follow a very similar path as yours. My husband wrote down some notes from the surgery appointment-In true fashion I wrote very few, but he wrote chemotherapy and pills, I don't recall that part of the conversation and am also under the impression, although possibly wrong that they would not do hormone therapy in conjunction with chemo. Either way-whatever it is it is, and my daily mantra has become I will do what they tell me to do because I have to do it, even though I don't want any of it.

Thank you for sharing with me, I really appreciate it, and thank you for the welcome!

moth

Hi EastcoasttoWestcoast,

sorry you find yourself here. That really sucks and these early days are so stressful and scary. Hang in there.

Your Grade is based on the Nottingham Scale. A score of 7 is Grade 2 (scores 8&9 are Grade 3)

Staging is determined by the size of the tumor and the number of positive lymph nodes. You said Stage 2 in your original post... When surgery is done first (before chemo, rads or hormone therapy) staging isn't final until after surgery. But if you're going to do treatment before, then you get a sort of provisional staging based on imaging.

Definitely agree with making a list of questions. And don't worry about being positive - there's no proof that it changes anything. Don't squelch your feelings, feel free to feel them. And as the saying on this board goes, you don't have to be brave, you just have to show up.

It will get better.

EastcoasttoWestcoast

Hi moth-

Thank you for the reply and the education. Thanks for letting me know not being positive isn't a guilt trip! Im always going to remember not having to be brave but just showing up-that says it all really!

I appreciate the reply.

macdebbie

Hi Esther. How can they tell node involvement without surgery? I've had a clinical (manual) exam of my lymph nodes and they haven't noticed anything, but my surgeon said she couldn't tell me anything until after they surgery had been completed.

exbrnxgrl

macdebbie,

A manual exam of lymph nodes can sometimes indicate lymph node involvement but examination after surgery is the bottom line. None of my manual exams or imaging indicated any nodal involvement. During surgery the sentinel nodes are sent to pathology and one node was positive.

Think of any pre-surgical information about tumor size and node involvement as a preliminary picture of what’s going on. The post-surgical pathology report is the most complete picture and tx decisions use info from that, not biopsies or pre-surgical imaging.

Esther01

Good morning, macdebbie,

My lymph node involvement was never palpably felt. It showed up in my first ultrasound which mentioned "several mildly thickened cortices" which were highly suspicious. The initial core biopsy then confirmed it. My surgical oncologist never did palpably feel any swelling under my arm, yet we knew I had at least two involved nodes. I actually had five.

Throughout my five months of hormonal therapy (aka NET for neoadjuvant endocrine therapy) with tamoxifen prior to surgery, each ultrasound showed that both the tumor and the lymph node involvement were decreasing in size. I was highly ER+/PR+ and despite the hot flashes, I feel the tamoxifen helped. I have had no significant issues on it, other than a swollen pinky joint that was already compromised.

I was surprised they chose NET with me because most of the studies on it have been done on post-menopausal women, not pre-menopausal. However, my MO (who has also written a book on surviving breast cancer) had done this with 300+ patients before me and none had their tumor involvement progress while on the NET. Surgery first though is the norm. I think one reason he chose NET for me was that it was the height of Covid and he was trying to avoid my having to be in a hospital in the midst of that.

I had already planned on doing radiation after surgery, so I chose to have the SLNB rather than removing all of my nodes.

Blessings,Esther

Waves2Stars

Sorry this is so complicated for you right now! You will be surprised how much you understand in just two more weeks. You end up finding out the different doctors come up with something like a preliminary treatment plan, but nothing concrete until surgery. That’s kind of frustrating and scary, but on the other hand, you can look at it like they’re really tailoring your treatment specifically to you.

Also, I don’t know if you have a friend or parent that can be available to call in during your appts, but it is very helpful. I can’t believe the number of questions I forgot to ask that I had written down in front of my face! It’s like I get a major brain meltdown as soon as I see the doctors! My husband kept questioning what they meant by this or that, why didn’t I follow up with other questions, etc. Last time I went, I asked if my mom could “attend” on speakerphone, so she was able to address concerns and remember things I didn’t think to write down. I plan to do it at any future appt.

Btw, I was worried about a high ki-67, too, but was told here, and confirmed by my RO, that it isn’t always accurate or used to determine treatment

macdebbie

Wondering44. I have a couple of questions on your post.

I was recently diagnosed with Invasive Ductal Carcinoma found via mammogram, then US which were "suspicious".

Core Biopsies (one US guided and one stereotactic) confirmed one was a cyst and one was some sort of mass, vague on size - between 3mm and possibly 6mm, unknown extent until surgery.

I met with the breast surgeon last week and she said I did not need an MRI. But it seems from what you wrote, MRI can find additional cancers. So I am wondering why I not being given that option.

You mentioned that it was not recommended to have additional biopsies due to risk of spreading cancer - I was unaware of that risk. So the biopsies themselves can actually spread the cancer?

You also had a CT scan and a bone scan. Was that to see if the cancer has spread?

Why wouldn't I have been given the option of additional scans? It seems they just want to do the surgery, then do radiation "in case there's anything else in your breast" (without knowing what else might be there?), and put me on hormone therapy "in case" there are other BC cells in my body - (wouldn't it be a good idea to do a scan like you had to see if there are)?

Can you shed any light on this? Thx.

exbrnxgrl

macdebbie,

Scans cannot see bc “cells”. Breast cancers spend a good bit of time being too small to visualize. They cannot be seen until they have grown to a point where they can be seen.

EastcoasttoWestcoast

Hi Waves2Stars-thanks for the response and the info about the high KI score. My husband was present for the surgery meeting and we wrote down some different things! Amazing how we can all hear the same thing but interrupt it differently!

Hi macdebbie-I had a diagnostic mammogram and then an ultrasound-after the ultrasound it was decided no biopsy because the dr felt an MRI was warranted-he said he wanted a “more clear" picture of the tumors and once biopsied they tend to look “messy" on films. I don't know if this is accurate, but what I was told. I had MRI two days later w/ the biopsies immediately following. I feel like from reading enough stories on here that the diagnostic process for everyone is very different depending on circumstances.

I didn't say that biopsies cause cancer to spread. I only asked if anyone had any insight as to why all of my tumors weren't biopsied at the same time. I still don't understand why they weren't.

My understandingis the PET scan that I'm currently waiting for in the waiting room now will confirm spread or no spread-I don't know if additional scans to check for this is warranted in each case and would assume they aren't.

I'm no expert here and certainly have more questions than answers so I do not want to steer you in any direction! You should ask your team the questions you have, you have that right to feel absolutely comfortable with this entire process is my opinion.

Sorry I can't be of more help, but I think. Exbrnxgrl explained the scans and the cells

exbrnxgrl

eastcoastowest,

Thank you for saying the diagnostic process is different for everyone. Although the stats we read in our signature lines may look like we are in the same boat as another, that’s a very superficial way to look at it. I am glad that our mo’s look at us individually.

Scans, such as CT and PET are not standard of care, under typical circumstances, but there may be situations in which these scans are appropriate. Scans expose one to a lot of radiation and are enormously expensive. Since they are not standard of care for lower stages, insurance may not cover them.

Additionally it’s important to understand that scans do not see things at the cellular level. Sadly, there is nothing at this time that can easily detect stray bc cells. They can travel through both the lymphatic system and the bloodstream. They can lay dormant and undetectable for years. This, among other things, is why mortality from bc remains largely unchanged despite advances made in early detection.

Seeding, the spread of cancer cells through biopsy is theoretical. This article is from 2012 but explains it well.

https://community.breastcancer.org/blog/what-my-patients-are-asking-can-getting-a-biopsy-spread-the-cancer/

Take care all.

Brooks_Fountains

Hey there. I'm new here too -- this is my first reply, in fact. I just wanted to say that I feel for you and the rollercoaster you're on -- I'm in a similar position where I'm going through diagnostics and unsure of what the treatment plan will be. I have lymph node involvement, and they biopsied one when they biopsied my 1 tumor. My cancer seems to be faster growing as well.

Diagnostic tests: My surgical oncologist had me do a CT, MRI, and bone scan, and now I have an appointment on Monday with the medical onc -- I will most likely be doing some neoadjuvant therapy before surgery -- what kind, I do not know. Wating on the mammaprint to see what therapies will be best! And guess what -- the CT found a nodule on my thyroid, which I am hoping is unrelated but will come with its own diagnostics soon. Whew. Sending good vibes, and feel free to message me as you go through your own journey. Take good care.

EastcoasttoWestcoast

Hi Brooks_Fountains-

Im sorry you are here too!

Good luck on your appointment Monday, let me know how you make out. I also hope your thyroid is cancer free, sending good vibes right back to you. Its so hard, right?

Unfortunately my PET scan revealed bone mets involving my L1 vertebra. There is a questionable area on my right clavicle but they were not able to determine what it was from the scan. Diagnosing Dr confirmed the area on my "vertebral body" is on the anterior par\t of my spine and not near my spinal cord so I'm "ok" to wait for MO appointment on the 9th. Easy for them to say. What little I read online (I know, I do try to stay off Google as it is NOT my friend) sounded very bad-but I know each situation is very unique and different. The area is small, estimated at 1 cm so I don't know if that's helpful its small but Im going to be hopeful that makes a difference.

Im still having trouble accepting this reality, although I know it IS reality if that makes sense. I had normal mammograms with zero issues and caught this myself a month before my year mammogram was due. Just kind of unbelievable. Anyway-Keep me posted on your appointment, love to know what your MO suggests. Love your quote, going to have to look up Mary Oliver.

Anonymous

Eastcoast - when you are ready, feel free to join us de novo ladies in the Stage IV threads. I know its a shock and especially to have such rapid growth and no pain and having to get your mind around it all at this time is tough. Really tough. De novo MBC (i.e. mets at initial presentation, not progression after early stage treatment) is treated a little differently and we are all happy to help answer questions or offer reassurance. There is a thread just for us, along with the different medications and met presentation areas (e.g. bone only). If you have to be MBC, one or two bone-only mets isn't a bad place to be.