Any newly diagnosed women from Vancouver BC?

planbattheedge

Just diagnosed with IDC with lobular features. ER and PR + and HER2 -

I’m scheduled for surgery June 11th - a lumpectomy with a Sentinel node biopsy.

My “non affected” breast hasn’t been checked/had an ultrasound … I believe this should have been done, or should be done prior to surgery.

if this cancer is estrogen fed should I maybe have opted for a mastectomy (double) and a hysterectomy? Getting rid of everything that could possibly have estrogen?

I’ve just turned 66. I’m a “young” 66 who, until this diagnosis March 31st was extremely healthy.

My main concern is knowing what to do. My “team” don’t feel like a “team” … I feel like all I’m doing is researching so I can make informed decisions, but omg it’s difficult!!

I am also a tad obsessed about recurrence, and it’s freaking me out, as everything I’ve read is suggesting to do everything I already Have been doing for the past 10-20 years after all of the treatments have been completed Sigh.

Whew - now I’m just going on and on 🤦🏻‍♀️ my apologies. Feels good to get it out - my concerns. Thanks so much for reading.

My heart goes out to each and every one of us - in the biggest of ways. ☺️🤗

What is your story?

Kim

moderators

Hi Kim 💗

First, please don’t apologize. What you’re feeling is something so many of us understand. The weeks right after diagnosis can feel like being dropped into another universe where suddenly you’re expected to become an expert, make huge decisions, and somehow stay emotionally steady through all of it. It's really too much.

You sound incredibly thoughtful and strong, even in the middle of being scared and overwhelmed.

A lot of women with ER+/PR+ HER2- cancers immediately wonder if they should “do everything” including double mastectomy or hysterectomy just to lower every possible risk. That fear is very normal after diagnosis. But choosing a lumpectomy does not mean you chose a lesser or unsafe option. For many women, lumpectomy plus radiation has outcomes comparable to mastectomy. Bigger surgery is not always better treatment. You're doing your homework, and asking all the best questions, so you'll need to decide what is best for you.

And estrogen-positive cancer does not necessarily mean every source of estrogen in the body has to be removed. Estrogen is produced in several places in the body, not just the ovaries. That’s why endocrine therapy is often such an important part of treatment for postmenopausal women.

As for the other breast, it is completely okay to ask your team why additional imaging was or wasn’t recommended before surgery. You deserve answers that help you feel informed and comfortable moving forward. Sometimes there are very reasonable explanations, but you should never feel hesitant about asking. We are always encouraging our community to advocate for themselves!

Also, the recurrence fear you mentioned... oh Kim, that is such a common and deeply human fear. Especially in the beginning. Most of us wanted guarantees and certainty right away, and unfortunately breast cancer rarely gives us that. Over time, though, the anxiety/"obsession" usually softens. The information becomes less overwhelming. The decisions become clearer. Right now you are still in the hardest emotional stretch, where everything feels unknown.

One step at a time, truly. Right now you do not have to solve every future possibility. You just need the next right step for you.

Sending you a very big hug, Kim. You are absolutely not alone in this 🤗💗

planbattheedge

Thank you so very much for your insightful and informative response. I’m so very appreciative. 🤗☺️

missymoo

@planbattheedge

Greetings from Ontario!

I'm sorry you find yourself here.

Everything you are feeling is normal. I'm a year and half in and some days it's still overwhelming.

As each province is in charge of their own health care, some things may differ, but there was no diagnostic follow up of any kind with the "non cancerous" breast for me either. Is this a "Canadian" thing??

In my case, my routine mammogram missed the cancer and I found the lump myself. There was some drama surrounding the diagnostic mammogram/ultra sound/biopsy and I ended up with only 2 days to make my decisions. I was two weeks from the meeting with the surgeon to my actual surgery.

Since you have some time before your surgery, ask questions. Lots of them! Don't be shy. There are so many great resources on this site as well.

Wishing you the best of luck and know you will get through this ❤️

planbattheedge

Thank you so very much @missymoo . Thank you for sharing and for responding- it really means a lot xo.

My mammogram missed my tumor as well - or maybe dismissed it?! No matter - less than 5 months later I felt the lump and well, here I am.

Sounds like we have relatively the same cancer - although I’m aware from all of my readings that no two are the same. I see that you opted for a bilateral mastectomy. I’m wondering if that is something I should be considering.
Would you (this isn’t meant to be a disrespectful question) have done things differently had you more than two days to decide on what you wanted to do? I’m so sorry you had such a short time in order to figure it all out - I can’t even imagine what you went through.

I have a concern about Hormone Therapy after I have radiation. I’ll have more information after my surgery / like likelihood of recurrence, if my lymph nodes are clear, how much radiation I’ll be needing (not thrilled about having radiation either, as I’ve heard the long term effects are Not good), and probably other things I’ve no idea about lol 😂🤦🏻‍♀️.
Do you have a lot of support where you live in Ontario? Did you ever get your Healthy breast looked at?!
How are you feeling on the Hormone treatment? Were you given a score (number) in likelihood of recurrence?

I apologize for all of the questions, and will understand if it’s too much to answer, but I so thank you for being in touch with me.
I’m also so Very sorry that you’re going through this Journey.

missymoo

@planbattheedge

Hi Kim

A lumpectomy was never an option for me. Because of the missed diagnosis and delays the tumour was too large so a mastectomy was required. My decision to do both was based on the lack of confidence in the local hospital diagnostics, the lack of additional screening on the other breast and the short time frame. I had no chance to do any research and while I was told that my odds were the same with a single mastectomy I chose to go ahead since I was having radical surgery anyway. The right breast did end up being cancer free.

Because I had a mastectomy and the margins were clean, I did not require radiation. The reason they do radiation with a lumpectomy is to make sure there are no cancer cells hiding in the surrounding breast tissue. I was fortunate to have clear lymph nodes and my Oncotype score was low so I did not require Chemo.

Hormone therapy is standard treatment for hormone positive cancer. While it can be unpleasant, sadly it's the best we have. It's normal to be nervous and you will hear a full spectrum of experiences because each body's reaction to the drugs is so individual. Some people have very minimal side effects, others more severe. My neighbour was in the first category and had no problem with her treatment. She was on for 5 years and then did another 5. Unfortunately I was in the later category. Your medical oncologist will prescribe the drug that they feel is the best option for your situation. Ask how they support you do experience side effects. There are things that you can do to help mitigate some of the side effects and some people find some of the side effects will diminish as your body adapts. They will often switch between the various drug options if SEs are bad. Some people tolerate one better than another but unfortunately it can be a bit of trial and error.

My support varied. Because I'm in a more rural area there is not a lot available. My diagnosis was a dumpster fire but my family physician is one in a million and the surgeon was wonderful. I had no pre-consultation with a medical oncologist. I met my oncologist 2 months post surgery and she was horrible. No communication, would not respond outside of scheduled appointments, ignored some of my questions and was dismissive and condescending when she did answer them. I requested a new oncologist and just met with him this week. He was everything she was not. If you do find that you are not meshing with your "team" don't hesitate to speak up and to request a second opinion if things don't improve. In Ontario you have that right and I would imagine it is similar in BC. There are no local reconstructive plastic surgeons so immediate reconstruction was not an option. I'm still waiting on my referral but have made no decisions either way at this point.

My cancer was IDC staged at 2a, grade 2, Oncotype score of 5. My overall odds for distant recurrence is considered low. Hard to imagine at first, but I am now so grateful knowing that I'm one of very lucky ones.

Hopefully your care team will give you sound information and guidance. I found once things start moving forward it became easier to bear. As difficult as it is, try not to focus too far in the future and try to take each day as it comes. Even without a cancer diagnosis we don't know all the "what ifs" in life. Some days you will be brave and decisive and some days you will be an emotional wreak. It's normal and its okay.

I will be thinking of you and hope you will keep me updated.

planbattheedge

@missymoo

Thanks so much for your message and comforting words - I’m so very appreciative of your sharing.

I’m so beyond thrilled for you that your lymph nodes were clear, and that you had a really low oncotype score. That just Fabulous!! 🤗. I am hoping for this best case scenario … right now I’m just happy that things are moving forward pretty fast. It’s All about mindset isn’t it? I have my high energy power walking 15km days, and then I have my stay in bed all day days lol. I’m trying to not let this take over my life … I’m fighting it big time, but at the same time I’m so disappointed that I’ve been diagnosed with this.
I’m interested to hear what you’ve decided to do about your hormone therapy.
I am so very relieved for you that things have progressed from starting off horribly, to moving along nicely, and feeling supported, and heard.

Am thinking about you - about all of us - in this nasty wee club, and sending heaps of hugs.