Diagnosed as IDC on November 15, 2016

I'm listening too. I'm 33 and have/had triple negative idc stage 3c grade 3 . (Wow. I just realized that is a lot of 3's!) I find it very helpful to write in a journal as well. I had a great response to chemo and when I had surgery in Sept. (bilateral mastectomy with tissue expander placement) I had a pathological complete response. Its been a long and fascinating journey so far and I still have radiation to go. I just wanted to say you are not alone. Sometimes I feel like my mind will never stop analyzing and jumping from one thing to the next, but once you have some idea what the game plan is, I felt more in control. Hang in there!

Neoadnuvant Chemo (Chemo before surgery) is becoming more common to get a better out come with surgery. It has been the 'Standard' for IBC (Inflammatory Breast Cancer) for quite a while it is now being used with other types for a while now.

The object of neoadjuvant Chemo is shrink it and get better margins (also with IBC - it is to get it form into a 'lump' as it presents as a 'nest' or in 'bands') which makes it better for SX (surgery). Some will get a 'complete response' meaning that when SX is done - no cancer is found.

Especially with nodes involved it is not at all unusual to do full body scans/checks to be sure that there aren't any mets. For me, the first scan I had was Bone Scan, then a CT and MRI with contrast. Then the next day I had a PET Scan which 'lit up' on an area along lower jaw so was sent to an ENT that afternoon for a biopsy of the area - next day had the path. on it - nothing there. PET Scans are super sensative and will 'hit on' any information. Don t be surprised to be sent for an EKG or MUGA test before starting Chemo. Also, a DEXA test may be ordered if you haven't had one - this is to measure bone density which can be effected by Chemo. (At 45 you may (or may not) have gone through menopause - I had gone tbrough natural menopause at 44 so had already been monitored for yrs before DX at 63.

Getting/Keeping a Journal is great. Another suggestion is to get a small notepad and keep it 'handy' to write down every question you come up with to be sure to remember to ask them at Dr appts. Some of the questions may be more appropriate for different Drs but it can't hurt to ask any of them. Also make a second copy of your questions to hand to the Dr - they can sometimes answer more than 1 question in a single reply. If you do not understand the answer - keep asking until it is put in words YOU understand. It can also be very helpful to use your smart phone to record the exact words the Dr is saying - that way, jf you need clarification in the future, you can review exactly what was said.

Be sure to get copies of EVERYTHING and file them away in case needed in the future.

Hi:

What I found comforting is that I have an intimate personal relationship with our Lord and Savior. He was and continues to be my strength.

I want to say that I am going on 2 1/2 years as a breast cancer survivor. Do not be too concerned with the size of tumor, because these results change often. When the final biopsy on the breast tissue comes back, they will know exactly the Stage of your cancer and all the other details, and that will be what it is.

My results from the scans said one thing, that had me at one Stage in the beginning. But once surgery was completed, the Stage was the next one up the scale after breast tissue biopsy came back. The size of the tumor clarifies what stage it maybe. Thankfully mine still was considered early breast cancer locally advanced Stage 2B, PE postive and Her 2 negative. They classified it as Invasive Ductal Adeno Carcinoma.

Be proactive in your care, and get educated. Ask questions like if I choose not to have chemotherapy, what are my survival chances? If I choose chemo what are my chances of survival and or reoccurrence?

I journaled also, but I have three separate ones for each phase I went through. I had surgery, chemo and radiation. I bought Journals and notebooks so I could look back and help others.

I desire to mentor someone in the future, and have a mentor from Murfessboro, TN who calls me almost monthly. Been a great help and encouragement for me.

Stay positive and keep the faith, it will make a big difference getting through this season in your life.

It is a very scary time, and a lot of unknowns, but if you have great support that will make all the difference in the world.

Take people with you at your appointments, so they can write exactly what the doctor said. You will be in such shock at times during result appointments, that you will not remember all the details.

Write down all your questions and during each phase any issues that come up. Watch your body carefully, so you know if something is not right.

I brought my chemotherapy side effect book at each visit with my oncologist. Because I knew the time would come when I could not remember.

I did have an echocardiogram before my chemotherapy. The muga scan is a heart scan, usually given if you have heart issues already or if the "chemo cocktail" they give you will affect your heart.

Also if you need dental work done such as cleaning your teeth and procedures, get it done before chemotherapy, or you will have to wait after chemo.

I sang many encouraging songs and did bible devotions to keep my spirits uplifted.

Also, I reached out to others.

I hope this helps

God is good!

Hi: Keep in mind once again that the size can change, why I do not know. I was told mine was a 1.7 cm mass, but when it was all said and done the final breast biospsy after my bilateral showed a 2.3 mass.

As to why a mass would not show up on a CT scan, could be the position of the mass, possibly to small to detect. For instance I had two ultrasounds done, and it revealed the mass under the right axillary that I discovered, but not the mass in my right breast. Only after my bilateral was performed, they discovered a mass in my right breast that they said was 1.7 cm in the eight oclock position (like the hands on a wall clock. Imagine how surprised I was, when the radiologist told me there was no breast mass.

Why did this happen I will never know. Three doctors never felt the mass in my right breast, nor did I. The only one that felt it was my oncologist. I asked my oncologist why three doctors could not feel it. He said because of there inexperience.

So, strange things can happen that make no sense to us at all.

With all the great medical technology you think the measurement of our tumors would be more precise, but they are not.

What a learning experience for me.

Some things that happen are pure mystery, and you will drive yourself crazy trying to understand and control everything.

Take each step as it comes, and do not get ahead of yourself. Stay away from the what if scenarios,as well.

Prayers

Snowsogal, thank you so much for sharing your kind and comforting words!

And Dcdrogers, please keep us posted on how things progress with your testing!

The Mods

Can anyone share with me what their mass felt like? I've had constant pain in my bones, muscle weakness for about 6 months. I've been diagnosed with spinal stenosis, degenerative disk disease and osteoarthritis. I am only 42 and I feel like I'm 80. But I recently found a hard mass in my breast. It doesn't move. It feels deep. There is not pain when it touch it but there is pain under it. Maybe in the nerves. Just wondering if I should worry about it or not. With all these other aches in my body I guess I want some answers. I just had a mammogram but I have dense breasts and this lump wasn't felt until a month after.

Hi Dcdrogers and others-Wow, can I relate to what you are currently experiencing! I was diagnosed in 7/2014 with bilateral IDC and my tumors were of 2 types-left was ER+, PR+ and HER- and right was HER+. I had skipped my yearly mammogram for 1 year because I was depressed after losing both of my parents in a short space of time. But here I am writing to you about it 2 years post surgery, chemo and radiation

I think you are being smart re mastectomy over lumpectomies. I was talked into the latter and it is awful to go through diagnostic mammograms every 6 months. There is always some "area of concern." I wish I would have just taken them off, to be honest.

If you have to have chemotherapy, do yourself a favor and have a port put in. It makes the experience much easier.

This board was a lifesaver for me while I was going through treatment. Stuff happens and it is so helpful to have others to talk to and to read everyone's stories.

I am praying for you and everyone else. You are in good hands.

Dee you are right you can read test results on the patient portal. I did that myself, and I do not advise you to do this. Because of the medical words they use to explain it. When I read some of my results on the patient portal, I thought my breast cancer had already spread because of it being in my lymph nodes where I discovered it.

Therefore for this reason; I do not advise it, unless you understand medical terminology, which I do, but I freaked out because I did not fully understand the whole meaninag of the report like I thought I did.

I also thought I could handle reading all the details on the portal, but I was just fooling myself. I can't it puts way to much stress on me.

The most important thing through this cancer season is stay positive and keep the faith. In addition, have a strong support system in place.

Take Care and keep us posted. You can private message if you would like

I plan to go to a walk in clinic that uses a different hospital tomorrow. I still have the one area of abnormality at 3'oclock(right breast) that wasn't checked with ultrasound and this new lump reminds me of a small chicken bone. The tip feels slightly kind of sharp but I can follow it into my tissue about a fingertip length before I lose it. I can't feel underneath it at all. It leads to the area where I've been having pain. What scares me the most about it is the hardness and the shape. It's not round and it seems to be growing against the rest of the tissue.

Hi.

Hi. I am going through exactly the same thing right now. I just got diagnosed with IDC and I am ER - PR- and I just got the result from the HER 2 and it is positive. I have no idea if I was hoping for negative or positive? There is medication to target positive it seems but it is aggressive and has a high reoccurrence rate is what I just read. Mine is 3.6 cm and between a grade 2-3. The MRI showed some node involvement but the surgeon hasn't called me to tell me what that means. I have a PET/CT SCAN tomorrow and an Oncology appt on Thursday. I try to read but it is a little frightening. I have a 13 year old son that I would like to get raised. I am 47. I have not been feeling well for a while. I have felt tired and weak. I have brought this area in my right Breast to the attention of mammographer in the past and have had ultrasound but was told it was just dense tissue. Mom had breast cancer at 60. Hers was ER+. Brothers had testicular cancer at 30, stage 3.

Just trusting God. I am in his hands.....as is the length of my timeline on this earth.

Hello Brown

The waiting is hard and I can't fault you for trying to figure it out! Been there myself. Too many factors here. No one can guess. I'm glad that you are on a path of care. Be a good advocate for yourself and ask lots of questions. Best wishes