Newly diagnosed and in limbo - frustrated, angry and terrified

Mum23boys · July 2016

hi wonderful community - I've been reading posts for a couple of weeks and finally mustered the courage to join. I had biopsy 7/14 and dx'd with ILC and have had a string of people to deal with since the person 'in charge' left on vacation and still hasn't returned. Had an MRI which showed one area at least 5.5 x 5 x 4 in the upper outer, central and inner from most posterior to anterior - they 'assigned' a plastic surgeon for me to meet with that I don't want - he is subpar. I told then who I wanted and the secretary told me not possible unless i wanted to wait til October and besides I was nuts - I already had God (I wanted to ask her how long she'd been sleeping with him but refrained). I canceled that spot myself. I've already scheduled a second opinion. I'm a 52 year old single mother of 3, two with special needs. Family is far away - my 56 yo sister was dx'd with triple negative DCIS this past November and all are in shock. I had mammo in January with 3 areas of micro calcs to be followed up in 6 months. One had increased - for a variety of reasons I brought them to a better facility that said January was Pleomorphic and punctate and 4c - not 3. How do I find the right care team that I can trust? How do I educate myself quickly? How and when do I get answers? How do I know what is right? I am an emotional wreck and feeling very alone frightened and trusting no one. Luckily I live in a major Boston suburb but it's surprisingly difficult to get things rolling and know who to go to and how long you can afford to wait to see them. My gut tells me I'm not going to be lucky enough to escape with a 2b. Btw it is ER and PR +, HER2- and e-cadherin 0. Thank you in advance for your stories and help and anyexperience with ILC!

reflect · July 2016

Hi mum2boys, so sorry you had to come here. You are doing the right thing, I think, getting a second opinion in Boston--Dana Farber should be one of your opinions. You can learn a lot about you dx on these boards--there's an ILC forum. There's a lot coming at you right now and it's crazy-making. It will settle and feel much better when you have a plan in place. The good news is that your tumor is ER/PR+ and HER-. Please breathe, ask your doc for lorazpam if you need it for anxiety--it's helped many of us. Please let us know what happens next. ((Hugs))

Moderators · July 2016

Dear Mum23boys, welcome to Breastcancer.org. We're so sorry for the circumstances that bring you here, but we're very glad you've found and joined our community.

Besides the great support you'll find here, you can read helpful tips on Getting a Second Opinion at the main Breastcancer.org site, including why and when to get them, and what to expect.

Let us know how you're doing, and remember, we're here for you!

Best wishes from the Mods

edwards750 · July 2016

So sorry you have had to join us. I second getting that second opinion. There are a lot of reputable breast surgeons and doctors out there. It's imperative you have a good relationship with them esp your oncologist. You have a lot on your plate and winging it alone is really tough plus you have children too. Sorry about your sister too. I have IDC, Stage 1b, Grade 1. My sister has BC as well. Her's is ILC. Our mother had it as well. She died at 83 but not from BC. Btw I will be 5 years out next month. My sister is 4 years out in October

Believe it or not you are going through the worst part of the process. You have so many unknowns right now. It's true once a plan is in place it goes quickly from surgery to treatment.

I have family and friends close by and I leaned on them. I hope you have support from friends and/or neighbors. Don't be afraid to ask for help. We all did. I even had a patient advocate assigned to me from the Women's Health Center where I had my mammo done. She was great.

Keep the faith and keep us posted.

Diane

chrissyb · July 2016

Hi Mum23boys and welcome......so sorry that you needed to join us but glad you have.

Getting that second opinion from a reputable BC facility would be a good thing for you as it will give you the confidence to move forward with a treatment plan and a team that you are comfortable with and have confidence in. Learning about your diagnosis here at the BCO main site will also give you some confidence in knowing what questions to ask your doc, whom ever you choose to go forward with.

At the larger facilities you will also find other services that could be useful to you as well as support.

Right now is the hardest part of this journey as you are in a form of limbo..........take a deep breath and try to relax a little everything doesn't have to happen today, you do have enough time to find your right fit medical team.

Good luck with your second opinion and please do stay in touch.

Love n hugs. Chrissy

Denise-G · July 2016

Mum23boys - So sorry - yes, Dana Farber in Boston is one of the best breast cancer centers in the country!

You want to go where there is a Tumor Board (a larger collection of breast cancer experts) that meet to discuss your

case and to get a plan in place. In my book, that is imperative. Myself, my mom and sister were all diagnosed with breast cancer

within 3 years. We have A LOT of experience with this and finding the best breast cancer centers..

If for some reason Dana Farber is not an option, it is best to go to an National Cancer Institute (NC) designated cancer center.

Here is a list:

http://www.cancer.gov/research/nci-role/cancer-centers/find

It will get better after you have a plan in place. . .sending my best wishes. Denise

Icietla · July 2016

Welcome, Mum23boys, and my sincere condolences. We are so sorry you are having these other difficulties on top of being newly diagnosed. You will feel much better once your treatment plan is in place with a start scheduled for your treatment.

Here are some thread titles from our ILC topics section -- I think reading these threads to start would be helpful to you. As you will learn from that discussion thread material, even a rather large ILC tumor does not mean that there are not good survival prospects; and estmates of ILC tumor size from medical imaging can be misleading.

ILC stage 3 and 10 year survival

HELP - MRI showed 7.5 cm Tumor

ILC Is there more chance of bilateral?

Mum23boys · July 2016

thank you all for your kind words, support and encouragement. I will keep everyone filled in on MGH and DFCI - hopefully it will be a clear path forward by the end of next week.

What a fantastic group of caring women - I hope to be able to provide the same support to others in the future. Most of all, thank you for validating the emotional roller coaster I was thrust upon without warning as being normal ❤️💛💜💚

Anonymous · August 2016

Hi, mum, sorry you are here, but you'll find such helpful info on this discussion board you'll feel like you've got 100,000 sisters all supporting you, a great comfort!

The ILC link is often quiet, so if you have concerns about ILC it's better to do a keyword search using the search function (upper left side screen) if you have specific questions. I was dx with ILC in 2011.

I am shocked a nurse would even bring religion into her response to you. That would tell me a lot about competence in that office. Talk about unethical....

You are lucky you've got such good health care close to you (Dana Farber). I had to drive 3 hours one way to get a second op at MD Anderson in Gilbert, AZ. Point is, you have to be ready to do ANYTHING and everything to kick c's *ss once and for all, and for me, if I thought MD Anderson could give me the best care, I was willing to do that long drive as much as needed for tx and surgery. Luckily the second op offered no new or diff tx than what my MO could offer me in Sedona, so I was able to stay closer to home for everything. My local PS actually had more experience than the one at MD Anderson, who was fresh out of med school, but I only found that out through interviews and meetings.

Let us know what your tx plan is once you've gotten your second opinion. You deserve the best care, and sometimes you have to get pushy to get it. This is one situation that is truly life or death, and I had to get fierce to get what I wanted. I'm glad, even though I was scared, that I put that emotion into action and asked for the best treatment I had available to me because I feel I got it, and that relieves a lot of fears no matter what might happen in the future.

Hugs

Claire

aven · August 2016

I thought the nurse referred to the subpar surgeon as "God"

"How do I educate myself quickly?" This is the most pressing question and one I grasped rather quickly, even though I have not even been diagnosed with anything. There is an overwhelming amount of information, a bunch of unknown words from at least three different specialties of doctors etc. What was important to me, for example, is to get through the lingo to the questions that are questions for THEM (meaning the doctors). I thought if I knew where they were uncertain/where the disagreements are, I could ask better questions about my case. Just my two cents from the beginning of the learning curve, no experience. You strike me as assertive in just the right way, and, hopefully, as you learn more some of the fear will subside.

Newly diagnosed and in limbo - frustrated, angry and terrified

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