Waiting for Surgery
Hello, I'm 48 and I was recently diagnosed with Invasive Lobular cancer of my left breast after a long journey. It started in December of 2023 when on a MRI they saw a spot that they wanted to recheck in six months. I was not super concerned as this had happened before on the right-hand side and it turned out to be nothing. Fast forward to eight months later due to having to reschedule and a long waitlist, I was told that now they wanted a biopsy but they weren't able to do a U/S biopsy instead they needed to do an mri so they set up an appointment in October. Get to the appointment they can't do the biopsy because it is a closed mri and they need an open one due to where the spot is located. It takes a LONG time to find and then get all the referrals to get me an appointment at a large hospital a few hours away. Now I am into the latter half of February when I finally get my biopsy and they end up having to biopsy two spots. I get the call after the weekend that I have ILC (ER+,PR+, HER2-), and then two days later I meet with BS. Since I was getting a mastectomy anyway I decided to get a bmx due to strong family history with BC. I was called a week later and was scheduled for April 4th. I really wish I didn't have three more weeks to wait. I just want to get it over with because we won't know til afterward, when they see if it is in the lymph nodes, what my stage and treatment will be. I am also fairly anxious about the whole thing. Up until the phone call was pretty sure it would be nothing. I also haven't told my kids (19,16,11) yet as we are waiting til spring break so they have time to process it. I am really worried how they will take it, especially the youngest two as they are very sensitive. Three weeks seems so far away, especially with my anxiety so high. I have a lot of swirling thoughts. Sorry for the rant. How did you guys deal with all of the waiting?
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Hello @janewatson. Wow. That’s been a long wait to get diagnosed! I’m so sorry you are joining us here. And I’m sorry you have a few more weeks to wait for surgery. It’s hard, all the waiting. Please don’t apologize for anything! We all can relate. I know I quietly read hundreds of posts on this forum when I was first diagnosed, I didn’t start posting until after my surgery … reading about others going through the same exact emotions and experiences was really helpful to me though (so I’m sure your post will resonate with others).
Not having to wait alone helps … being surrounded by support with family, friends, and everyone here does make a difference. I joined the BCO In Treatment for Breast Cancer support group on Zoom and that was exactly what I needed! Also, just staying busy, getting as prepared for surgery as possible helps pass the time. I found it was such a weird mental divide, going through the motions of normal life in the weeks leading up to surgery (I had a 2 month wait from my diagnosis to my surgery due to the surgeons’ schedules) while carrying the weight of a new cancer diagnosis … it was a surreal time. Looking back, I’m glad I had that time to prepare and mentally absorb the diagnosis, to start educating myself on breast cancer.
Ask us anything and we’ll do our best to try answering. We are here for you!!
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Hi janewatson, I was diagnosed with ILC almost 6 years ago. I was told to have several biopsies until I decided to stop them and go for BMX. I don't have BC in the family or 84 genes that were checked. This doesn't mean much. I live in a place with the best hospitals in the country and I got 4 different opinions, in the end, it was my decision to remove my breast tissue. My kids were 14 and 11 at that time. I set them down one day and I told them that I was diagnosed with BC. My 11 yr old started to cry and the 14 was terrified. I told my kids that it was caught very early and once removed, I would be fine - all made up to lower their anxiety. I have no regrets at all for half lying to my kids to make it a minor health issue in front of them. Here I am almost 6 years since my diagnosis. Surgery discovered other spots with ILC and 2 nodes. Here I am after 6 years and doing fine. I finished the medications and now I go for checkups every 6 months. Wishing you good luck. Dealing with this diagnosis and having young children is every mother's nightmare. Hang in there. Sending you hugs.
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@janewatson, we're sorry you have to be here for this, but we're glad you found us, welcome!
Besides the wonderful support you’re already receiving here on the discussion boards, we also have an article called “Talking to Children About Breast Cancer” that might help guide you through those difficult conversations with your kids.
Hope this helps. Let us know how you're doing during the coming weeks, we are always here for you!
Sincerely,
The Mods
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Thank you, guys, for all the helpful advice and kind words.
@needs.a.nap It is a weird mental divide because I still am picking up kids from school and having to do laundry while at the same time in the background, I am constantly thinking about my diagnosis and the upcoming surgery. It does feel very surreal.
@lillyishere my husband and I have also decided to try to be cautious in telling the kids the news making sure they know that BC is very treatable nowadays. Like you, we want them to be aware what's going on but not to scare them or make them unnecessarily anxious.
@moderators Thank you for the article I'll definitely read it.
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I'm not a parent but I do work with kids and for what it's worth, I think it's helpful to wait to tell your kids until you have a handle on your own anxiety and are able to help them co-regulate their own responses - BUT - also not to wait too long because kids, especially sensitive younger ones, will pick on something being wrong and if you don't tell them what it is, then what they fill in with their imagination could be much much worse.
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@salamandra thank you so much for your advice. We are going to probably tell our kids this weekend as they are on spring break so it will give them time to process, and we can spend more time with them.
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@janewatson - I was also told to wait and check again in six months. Then delays in scheduling biopsy though not as long as you had to wait. Once o had the diagnosis I was able to move pretty fast to surgery for which I am grateful. Waiting would have been difficult. I delayed telling my Mother of the diagnosis and that was hard. Our loved ones are stronger than we might realize. Hope all goes extremely well when you share with your kids. I expect you will be very relieved and feel much better following the conversation.
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So sorry for all the delay you had. It just means more anxiety. I was offered meds for that as soon as I was diagnosed.
I too am waiting for surgery on 4/10. I had chemo first.
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@chelsea5 Waiting has been pretty stressful. Thank you for your kind words. I hope it goes well as well. We tell them tomorrow I think you are right about it being a bit of a relief. At least then we can talk about it openly.
@gailmary I wish they had offered me anxiety meds they probably would've helped. I hope your surgery goes well and the wait isn't too hard on you.
Thank you both for your kind words.
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