completely overwhelmed-help

Hope this is the right place to post this. I just got the call from my breast surgeon about my MRI results. I feel like I am back at square one and could use some help working through this. I understand ultimately it is me that will make the decision, but I need to talk about with those that understand. So my ultrasound and mammo measured my tumor differently and since it was ILC they ordered the MRI. MRI measures it at 2.6cm, but lots of other areas "lighting up". up to 4.8cm. So she is now sending me to MO prior to surgery decision, when at first I was going after what I thought was a lumpectomy with rads. So it seems my choices are this: 1. I will need an MRI guided vacuum assisted biopsy of at least 2 of the spots that are lighting up. If these are "diseased" tissues that makes the decision for mastectomy in of itself. She said she couldn't do a lumpectomy with good results on a tumor that size. 2. I can just choose mastectomy and she said the final pathology will determine the size and weather I would also need rads. I prayed specifically for this MRI to show all of the disease, and when I woke on the morning of the test I had an odd sense of calm. I have continued to pray for a clear answer but now I am just overwhelmed and confused. I left it that I would call my nurse navigator in the morning, and I also go back to the surgeons office for genetics with her PA so hopefully I can talk through it with her too. I really need some help here folks, I am feeling a little more than lost and alone here.

Hi there Dani. First, do know that usually (but not always) MRI technology shows tumors as larger than they really are. So if it was me, I'd do the biopsy. That way you'll have a better sense of whether it is ILC, DCIS or just LCIS. (Mine was a mix of ILC, IDC and LCIS, and it was two different tumors close together. I had a lumpectomy.)

I'd also do the genetic test. If you have the BRCA gene, you might decide on the masectomy (or a double masectomy) based on that information alone.

I'm so sorry you are getting bad news, but you seem like a strong person. Just take it one step at a time, and you'll make it through.

I had a needle core biopsy and after that was completed they said I would just need a lumpectomy.   After the final results came in and it was found out that I had ILC I had two choices.   Lumpectomy with 27 rounds of radiation and needing to make sure all margins were clear or mastectomy with no radiation and letrozole for 7-10 years.  I chose the mastectomy and even wanted the other breast taken off but he said he could not do that since there was nothing wrong with that breast.  I still want that breast gone.   I now have a spot on my face which I have to have a surgeon remove for a biopsy since they think it could be a melanoma.  I just heard from someone on these posts that she got a melanoma before she found the ILC.  I just called My oncologist and she said wait until the results come from the biopsy on my face and they will tell if it is ILC related.   I feel like this is never ending.   I know how overwhelmed you must feel.  I am six months out from my surgery and still every day is a worry with one thing or another.  Hang in there.   We are all going to be okay!!!!  Stay strong

Dani444

Thank you for the hugs.  I needed them today .    Good luck with your appt and keep us updated.  Sending all good thoughts and energy your way.

Dani444 I'm very sorry you are going through this but just like the rest if us, you have to fight hard, take one day at a time and try and stay positive (easier said than done, I know).Never stop praying, I believe in it and it will get you through the hardest of times. I opted for a double mastectomy and I don't think I will ever regret that decision. I just didn't want to take the chance of it coming back. My tumor was 1.8 cm in one breast and I had lCIS in the other. I also had an mri guided biopsy and it showed the tumor to be a little larger than what the surgeons biopsy showed. Ultimately the final decision is yours. Make the one that will give you peace of mind. Good luck and please keep us posted. Hugs!!

I had a left side mastectomy for 2, 1cm tumors everything else clear. No radiation and really good DIEP reconstruction. Reconstruction really repaired everything so happy.

I echo Wallycat. Having people to talk with who actually went through the horrors of diagnosis and treatment helped me get through that desperate 2 month period of being diagnosed with BC. If I can help anyone else I will gladly do it.

For me I want to express the emotional pain of cancer and mastectomy. My experience has been cancer treatment seems almost barbaric my experience with plastic surgery has been very good. I would not have been so emotionally devastated by mx if I knew I could have such good cosmetic results. It sounds so vain but emotionally in repaired the "damage".

Suzyshacklechic- I am so sorry you are here with this diagnosis. The early stages of diagnosis are the worse, I have found. Exactly what these super supportive members on here told me in the beginning! ILC is pretty sneaky from what I have learned, due to the way it grows in single cell line, and lacking the protein that causes the cells to clump together that would lead you to feel a lump. It is not uncommon for this cancer to hide in imaging, so glad they were diligent with their exam. You will get a ton of information from that initial meeting with the surgeon. A big piece of advise I was given on here and wish I would have taken was to take someone with me to that visit! Write down all the questions you can think of until then, because you will forget them when you are in there, it is so mush info at once. Are you seeing a breast surgeon, or a general surgeon? There is so much waiting in this crappy situation, and that is the part that really sucks. When you get the information you need and get a treatment plan in place you will start to feel a little less terrified, I promise. These boards have saved my sanity, even if just by getting a wealth of knowledge from these amazing people! Do not hesitate to ask anything, or if you just need to vent! I wish you the very best and moments of peace and calm as you move through this.

Suzyshacklechic

I too was diagnosed with ILC and had my surgery in February 2018.   At first they thought I only needed a lumpectomy but then when the pathology came back with ILC diagnosis the surgeon said mastectomy was the way to go.  Take the worry out of constantly going back to make sure margins are clear.   I really wanted the other breast taken off but he said insurance would not cover that because there was nothing wrong with that breast.   Take your time with your decisions.  No need to rush into anything.  I was diagnosed in December of 2017 and did not have the surgery until Feb. 2018.   ILC is sneaky but it is not fast growing.  I'm sorry you are going through this.  Take plenty of notes and someone with you whenever you can.   Keep us posted.  Sending you all good thoughts.

Astrid- I have my surgery coming up on the 25th! I will report back on how it goes. Getting more nervous as it approaches but will be glad to have it done with! Thank you for asking

Dakrock -I am so sorry that came back as melanoma and that you have to go back for more surgery. I imagine that is emotionally exhausting with everything going on. I will pray they get clean margins coming up.

Astrid

Thank you so much for your kind words.   I am keeping the faith as best I can.   Hang in there too

thank you Dani . I am going to surgeon on 30th to discuss plan