Just diagnosed idc grade 3

cvicks

Hi everyone I’m new here. I’m so glad to have found this community! I just got diagnosed with idc grade 3 August 8 2018.I’ve been pretty positive and optimistic but as the reality sinks in I’m starting to have some anxiety. I’m meeting with my surgeon Tuesday, they told me to prepare to have chemo, surgery and radiation in it will all start happening in the next couple of weeks. He will likely want to shrink my tumor with chemo prior to surgery. I’m wondering as I go into my appt if there’s any kinds of advice you can give me to help me prepare for the journey I’m about to go on. or even if you could share some of your own stories. I have a very large support group but I’d love to be able to hear some stories from others who have had this diagnosis. Anything you are willing to share with me would be really appreciated.

Caylin

Falconer

Caylin, so sorry you find yourself here. It's great you found BCO, as there is such wonderful collective knowledge on this site.
It's also good that you have a strong in person support network as well.
I've passed the two year mark since my Dx and it really does get easier once it is in the rear view mirror. And you'll get here! Best to you and much strength always!

moth

Hi Caylin, sorry you find yourself here but it's a great place for info & support. Once you know exactly when you're starting, consider joining the monthly support threads for chemo, surgery and rads. Also, I'd suggest having a browse through previous threads. At the beginning of my treatment I read threads from people about 3-6 months ahead of me to see what they were experiencing and learn from their tips & tricks.

You may want to fill out the diagnosis part of your profile & make it public so we can give info more precise to your situation. Some important aspects of your dx are what size the tumor is & your hormone marker status as treatment can vary based on that.

best wishes ~

cvicks

Thank you Moth, I’m trying to find the settings to change my info to public now! I thought it was automatically posted.

cvicks

thank you for the kind fords Falconer. I found the replies to my post to be refreshing. Knowing women like yourself have gotten over that first couple years gives me so much strength and hope. Much love to you in New York

beauz

hi Caylin, I like the idea of having chemo before surgery to see how the tumor responds to chemo. I would ask the surgeon about putting a port in as soon as possible to begin with. I didn't have a port. My arms and veins looked horrible after many pricks later in the chemo treatment. Also drink plenty of water to help with recovery and proper functioning of port or putting in a cathater for IV. Wishing you a smooth journey.

Gndvll

Hi, Caylin. I'm Gina and I'm about 2 months ahead of you. So far, so good. The meds help. Don't be afraid to take them. You can develop a tolerance, but I believe after treatment is as important as treatment is. Everyone told me that this pretreatment phase is the hardest, and so far they've been right.

We're here at all hours. Come see me. I have the good stuff ---Zofran!!!

Kelly-Anne

Hi Caylin,

IDC grade 3 got me too. Don’t get too attached to the order of treatment until they actually start. We did a bunch of chats between my surgeon and oncologist moving before/after until the tests finally supported after surgery. Even without the chemo first I was able to stick with the lumpectomy. Grade 3 grows quickly so I was happy to have it out. Post surgery left boob is smaller but unless you’re looking at me naked (not!) you wouldn’t notice.

I’ve learned that the people closest to me are actually the hardest ones to have with me at my appts. I’ve settled on my husband when he is available (he is taking this really hard) and a neighbour who is a 15 yr survivor to take notes and read them back to me the next day.

Keep your head up, find the sunshine where you can.

cvicks

thanks for commenting everyone! Last year I met with a "breast specialist" (eye roll) once in the spring and once in the fall. He told me I had mastalgya in my breast (unexplained breasts pain) and offered to put my on anxiety medication. Now with my diagnosis they sent me the same "specialist" his diagnosis was stage one or two even though we still don't have my full pathology. He said he would do a lumpectomy chemo and radiation. I told him i had pain in my arm pit and surrounding area and he told me that pain was something else not related to my cancer. He was going on holidays and would try to fit me in around September 7th and refused for me to have any further scans. He still wasn't taking me seriously. I immediately met with another surgeon who actually examined me and found a large lymph node in my arm pit where my pain is stemming from. I went straight to the hospital to have it biopsied as he is certain it is cancer. They put clips in both my original tumor and arm pit. I had a double mammogram before and after. I will have a bone scan and ct scan on Monday. This surgeon is taking things very seriously and has even given me his cell phone # so I can keep him updated on when my scans are finished. He filled out some paperwork for my bluecross and he wrote "likely stage 3" so that's a lot different from the first "specialist" .. Excuse my sarcasm quotations when I refer to the other doctor he was very rude and very desensitized to me as a patient. I felt going into this I would be stage 3 as I've had the surrounding pain since Christmas time 2016. Every doctor tried to treat me with anxiety medication and basically told me I was hormonal as I had just had a baby the year prior. I'm just glad to finally have found a surgeron and skilled doctor who has heard me and took me seriously. I'm a mother of a three year old beautiful girl and I'm ready to fight for my life!! It sounds like as soon as he gets my biopsy and confirms cancer in that node he wants to start chemo ASAP. It's all starting to finally happen after what feels like a lifetime of waiting and I'm looking forward to getting on with treatment so I can come out the other side and live a warrior life!

moth

Caylin, glad you are seeing someone who is proactive and obviously understands how to treat this aggressively.

Do you have an oncologist on your team yet? And when you find out your hormone receptors you can also get a better idea of the treatment plan as it will be different for various combinations of neg & positive. You may need chemo - this is where the oncologist comes in as they direct the chemo decisions and implementation.

best wishes

Bostoniangal25

cvicks, so sorry ... you sound so young, perhaps that's why you didn't have your mammogram before?

So, I have idc and dcis together grade 3 stage 1 and 1 tiny micromet in 1 lymph node, so before the surgery I did mri and it measured 5by 3 cm- I was shocked . But after surgery it was less than 2 cm, 3 mm, 9mm, 5 mm so together less2 cm.

I decided on mastectomy because my breast are small and I was afraid that they live more cancer inside and didn't want to do radiation. After mastectomy I had an oncotype of 29 and grade 3 - I had second opinion with the best oncology director and before surgery with top notch surgeon in Boston - now doing chemo .

Usually chemo before surgery is for triple negative cancer or for candidates for lumpectomy.

For lampectomy u have to follow by radiation.

Did you do lymph node biopsy? No one can't tell stage before biopsy.

What is your hormone status ?

I m sorry that you had bad experience with docs. Do you know if they didn't take you seriously after your complain about pain- you can sue them for medical negligence - they missed cancer...

you are in right place, with support and understanding- because we all know what your concerns and worries... we are with you!!❤️❤️