Newly diagnosed and new here

Merredith

Hi all, I’m so glad I found this site. I’ve been reading a lot and doing research on my own while I wait for my lumpectomy and sentinel lymph node biopsy scheduled for March 18. Waiting is hard and I really just want this out ASAP and treated. I was diagnosed with IDC with lobular features, intravascular invasion, ER+PR+HER2- I have 2 lymph nodes with enhancement. I received a breast MRI after biopsy of the right breast mass was confirmed and it showed 3 lesions on my sternum. I then had a sternal MRI and it showed the same- 3 lesions, too small to biopsy, on my sternum. The docs are stating it could be bone marrow but there is a chance it “could be metastasis”. Docs want a MRI follow up on the sternum in 6 months and I’m not comfortable with that at all. I am going to compromise and say let’s do it in 3 months. So I heard the waiting is the worst part and boy I’m feeling it right now. I go from reading scholarly articles, studies, and reading how other women deal with this to being completely isolated and unable to do much of anything. Walking around with cancer there and growing is going giving me such anxiety. I’ve read up on Intravascular invasion and how some docs aren’t worried about that t I am. I can’t help it. I’m not it married, have no partner and limited support. I’m a also taking care of my son who was hit by a drunk driver and has a brain injury. I’m financially bankrupt and stressed. I just wanted to introduce myself and say thank you for being here. This site has helped me so much. Sorry this is so long! I hope you are all feeling well and fighting hard ❤️🙏🏻

edwards750

Merredith - so sorry you are part of our group and we all empathize with the waiting game. We have been there, done that. Believe it or not it’s the hardest part of the process.

The one thing I think we are all in agreement with is be your own advocate. Doctors and friends will dispense advice and recommendations but at the end of the day it’s your body and your life. We all deserve a QOL.

Having said that talk to your doctors about your concerns. If you think a test should be done sooner to satisfy your anxiety tell them. Sometimes just taking an anxiety drug is helpful. Lots of us have done that. It helps dealing with the fears that come with this DX. Also do your homework. Be prepared with any questions about treatments and procedures. It’s your right. It’s always helpful too to have someone go with you if possible to take notes because you are inundated with information. No one can absorb all of that while dealing with the shock of being DX.

Of course you are scared and stressed. So sorry about your son. That’s horrific. I lost a brother to a drunk driver.

We are here for you. We aren’t doctors but we have a lot of experience in what you are going through. BC isn’t a one size, fits all disease but at least you can garner information from those of us who have a similar DX.

I know it’s a financial hit too. See if a social worker or an advocate can help with that. There are agencies who offer financial support. It has bankrupted some ladies. Despite insurance coverage there is always an out of pocket expense.

There is a light at the end of the tunnel though. I’m 7 years out last August. It does get better with time.

You can do this. We are proof of that. Keep the faith and keep us posted.

Diane

Merredith

Thank you so much for your reply, Diane, I truly appreciate it. You instantly gave me some peace and it was much needed! So grateful for this site and your caring reply:) I’ll keep advocating and reaching out for help-something I’m not used to lol

I’ll keep you posted and thank you again for being so kind.

And hearing you have 7 years out gave me hope! Thank you and I am so happy for you!!

Merredith

footloose

Meredith,

Hi and welcome. This is a wonderful site!! It has helped me a lot [I just got on it last month.] It is so true the waiting really is scary. It gets easier with some answers and a plan. I've been there before but they were always DCIS, this time it's IDC and there were more than one tumor. Most places have social workers and financial counselors that can be very helpful. You are obviously a tough lady b/c you've gotten through a difficult time with your son [how old is he?], consider this just one more difficult challenge that you WILL get through.

Keep us posted.

Merredith

Thank you for your reply and support. I will speak with a social worker at the breast center. My son is 20. It happened 2 years ago, in his senior year when he was 18. Been a long, hard journey. He’s made some progress but has a ways to go.

Thank you for being so kind and helpful.

I’ll keep you posted and I hope you feel well today. Keep fighting.

Natemax

I had many sclerotic bone lesions on initial CT scan. Bone scan normal. Had biopsy of lagest which was benign. Keep the faith. 💕

Merredith

That is such good news! It’s awful scary. I had my partial mastectomy with SLN biopsy on 3/18 that came back positive. I had clean margins and still waiting on Oncotype.My follow up with surgeon is Wednesday. I don’t know the treatment plan just yet but assuming they will start Chemo since they made me an appointment with Onco for 4/17. In the beginning of this journey, I was told that it was small and the ultrasound of nodes looked great and I’d be set up with Radiology post surgery. Now-. Everything changed after surgery lol node positive and the mass grew. I also have lymphovascular invasion(which is a concern to me). Waiting is hard and wanting to get this treated ASAP also has made my patience a little scarce:) One thing I want is a PET scan. Hope they oblige lolI’ll keep you all posted. Thank you for being here!

Merredith

letsgogolf

Merredith, Just wanted to say hello. Your diagnosis sounds very familiar. I had IDC with Lobular Features. Mine was also, grade 1, stage 1 and ER+, PR+, Her2-. These results are pretty typical with this type. I am going to guess that your Onco score will also be very low and you may not need chemo, which is said not to work well anyway with our slow growing cancer. An anti-hormonal pill will likely be your new best friend. Hang in there....you will get through this!

Merredith

Thank you! I do hope so. With the lymph node being positive and having LVI, I don't know what the plan will be just yet but hoping for the best outcome regardless of what treatment. I just want to get it treated and get well:) I'll know more Wednesday and keep you posted.

Thank you again!

Merred

Monl

Merred, stay strong. The waiting is terrible. Totally agree with other replies to your story: low grade, ER/PR positive and LVI so the anti hormone pills will probably be part of your treatment. I was happy to skip chemo, but did loose my breast and had radiothrapy. It’s like being in a storm the whole time. But you can do this.

Monique

Merredith

Thank you, Monique, for the support and guidance. I’m more concerned about the lymph nodes being positive. They say in medicine “all nodes lead to chemo”..there’s so many studies but with my age (44) and node positive status I’m assuming chemo in the mix. Ive read NIH studies that the Oncotype DX score is not a good predictor of outcomes for women <50. That’s pending, but in essence it may not be the deciding factor on skipping chemo. It’s all confusing and a lot to process but I will do whatever it takes to be well. I have my surgical follow up tomorrow morning. Hoping to know the plan. I’ll be sure to share what they say. Thank you for your kind reply and I hope you are well 🙏🏻

Meetedith

msphil

hello sweetie we are here for you and I was diagnosed at 42 while preparing for our 2nd marriages with my fiance and family and close friend who been thru cancer I was blessed for so much support so we are your family here. I found my lump in shower during all these plans. But with Hope and Positive thinking and my faith I am now a 25yr Survivor this yr. So have Hope sweetie. msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast got married and then 7wks rads. I took a 6month leave from my job. Then 5yrs on Tamoxifen.

Merredith

Thank you so much for your kind reply, filled with hope! I’m so happy for you and hope I’m as successful. I have to now get all of the lymph nodes removed because my SLN was positive. They are deciding now on surgery on lymph nodes before or after chemo. Should know soon.

It started out as a small grade 1 mass and I hoped to have partial mastectomy (which I did have) and I hoped for radiation but the plans have changed. I go today to see a Lymphatics plastic surgeon where he will work with my surgeon and reapply my vessels to decrease the chance of Lymphadema. He’s one of 3 people in the world to do this so I feel blessed for that. Hoping I don’t get Lymphadema. They are staging me now. I have a PET CT scan on the 18th. I’ll be sure to keep you posted.

Thank you for being so kind and encouraging 💕

Merredith