New and Confused
45yo Newly diagnosed with ILC Stage 1A and LCIS. Us found 1 tumor at 6mm. MRI biopsy found a 2nd tumor at 7mm with Lcis. Will be getting double mastectomy with reconstruction. All the waiting in between has caused so much anxiety and stress. Genetic were negative and no family x of bc. ++, her- Do you feel a sense of relief after surgery or is that only the beginning? I read I won't need radiation after but what are the odds of needing chemo? I will have to take tamoxin for 5 years. What happens after surgery??
Comments
-
So sorry that you find yourself here. Let me start by saying that I am not very familiar with ILC. However, both LCIS and DCIS are what give rise to the invasive varieties of those cancers. This simply means it is very common to find both invasive and non-invasive areas. Genetic mutations for bc are actually a minority of cases, about 15-20%.
Anxiety and stress…I don’t like to make blanket statements but this early diagnostic and planning period is often the most stressful. You want to know, understand, and anticipate everything…yesterday! Almost all of us have felt exactly as you are feeling. The reality is that bc is not considered an emergency, even though it feels like it. In general, even aggressive breast cancers are slow growing. Please know that it is very highly unlikely that waiting for all the info to be gathered will in anyway effect your health. BC is much more complex than most of us know until we are diagnosed. The possibilities and variations all need to be determined before a treatment recommendation can be made.
I would urge you to focus on what you know to be fact right now and don’t spend much time speculating about what isn’t known ( we all do this to some extent).
What happens after surgery, how will you feel, is it only the beginning… All good questions but we are all different! We recovered differently, we have different types of recon or none, post surgery pain is different, post surgery treatment is different. I think reading through the threads can give you some general idea of how folks in situations similar to yours did, but I know there are varied experiences. But again, try to focus on now and the next couple of weeks. Lastly, chemo? We are not doctors, and not your doctor so we have no real ability to give medical advice, only our personal experiences, which might not be yours. Many, but not everyone, of us really have found this initial period to be the worst. You are truly not alone!Take good care
0 -
Hello Confused, welcome into our club. It will take a little while to let things settle in, so please wipe your mind of any & all expectations. There's no wrong way to feel, so please take little baby steps and you'll get there. It's a huge learning curve, so it's best to proceed forward very slowly at your own pace.
Your tumors are very small, so it apparently was caught quite early. Surely somebody with a similar diagnosis will be along later. I didn't have any lobular cancers, so I cannot comment on yours specifically. I had mixed rarer subtypes of BC, but I did get a mastectomy, at which point I felt a huge relief. My BMX was relatively easy for me, and I've been flat almost 12 years. My best to you in your BC experience.
0 -
Another member and I were chatting on a different thread as we are both struggling to digest a lot of new information about our situations. We’ve moved to the, “How do you eat an elephant?” model. Answer: One bite at a time. Breast cancer can be quite a large elephant so eat in small bites and even take a day off (not easy) if you can. Seriously, most of were surprised by how lengthy the initial process took and how complex bc actually is. Take care
0 -
If your tumors are small (6mm + 7mm), node-negative, HER2- and your genetics came back negative, the odds of needing chemo might be pretty low but it depends on final pathology and things like Oncotype score (if they do that). Your doctors should go over all that post-op
1 -
Great answer @exbrnxgrl and @mexicanmary. @worriedandconfused we're sorry for all you're experiencing. One day at a time. It takes time (often too much). You are NOT alone here. Did they run an oncotype test for you? Or any test to help assess if chemotherapy would be advantageous ?
1 -
Still waiting on appt with plastic surgeon 2 discuss reconstruction options. Just feeling extremely overwhelmed with all the tests and wait times in between appointments and followups.
0 -
Yes, it is overwhelming. I am going to say this again because I think this thought has gone through all of our heads. The waiting will not compromise your health. Breast cancer is slow growing and not considered an emergency (really!). It needs to be treated but the time it takes to gather the information needed to develop a treatment plan is important for the treatment to be effective. What you are experiencing can be frustrating as well since you want to move along quickly but you are not experiencing any unusual delays. If the anxiety is overwhelming, ask your mo about something like Xanax to help when needed. This has been very helpful to many and there’s no shame in it. Take care
1 -
Hello—I’m a year and a half out from a diagnosis pretty similar to yours (I’m in my 50s), including having another small tumor detected only by MRI. Whirlwind of appts to a double mastectomy in about 7 weeks and then reconstruction with implants complete (except tattoos) 4 months after that. I couldn’t wait for surgery—those in-between weeks were brutal. Surgery was a relief and getting my pathology report about eight days after even more so. Neither chemo nor radiation was recommended; I had Mammaprints, which indicated low risk of recurrence. Hormonal therapy was strongly recommended and I was all for it despite being a bit freaked out by side-effect horror stories. Started medication a month or two after surgery. No debilitating SEs thus far. I found mastectomy recovery hard, but doable. I tried to be as prepared as possible with the wedge pillow, front-closing garments with drain pockets, taking FMLA time, etc. Those things worked out well for me. I didn’t take any opioids post-op, but huge thumbs-up for Gabapentin for the nerve pain. Also, PT was instrumental for regaining range of motion and getting rid of cording. I had several complications along the way, such as delayed TE placement, but I feel good now, which I hope reflects my health. It’s been life-altering, for sure, and I still worry—will always worry—but I’m at peace with my new normal. Hopefully will maintain the status quo. Trying to live well in a balanced way. I hope all goes well for you. What people have shared in this forum has been very helpful to me and I’m grateful to them.
1 -
Just thought of something. There are any number of products out there that are sold as post surgical “needs”. Check with your insurance first to see what they may provide, such as soft front closing bras or step in camisoles. Much of the other stuff they sell is nice, but there are many non-specialty items that will work and you probably have laying around the house. My center did not provide drain pockets/holders but they’re easily safety pinned to a shirt. The post surgical period often goes by quickly so unless money is no object , don’t think you need to spend much in terms of recovery supplies. I loved the wedge pillow most and use it to this day! Take care
0
