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Sep 24, 2022 07:12AM
I too want to thank gardengurl as well as bcat34! This is my third time being diagnosed with breast cancer. I had a feeling I had cancer again at the end of July when my mammogram was BIRADs 4 and the radiologist told me I needed a biopsy.
Quick rundown of my cancer: 2003, pre-menopausal, IDC, treated with two lumpectomies (second one for clean margins), chemo and radiation. I call it being mutilated, poisoned and burned, which sound like a horrible way to describe it, but in reality, it was just that. When I say burned, I mean burned, not just red skin and painful! I had jellybean size blisters on top and the underside of my breast skin actually sloughed off! This is abnormal, doesn't usually happen like this, but it happened to me. I also had 24 lymph nodes removed, all negative, which caused immediate lymphedema in my left arm. It is twice the size of my right arm. That is a long story I won't go into here.
In November of 2018 I had pain in my breast. My gynecologist ordered a diagnostic mammogram and US. I had a biopsy which revealed ILC in the same breast. In January of 2019, I had a single mastectomy because I was refused a bilateral mastectomy on the grounds that this highly respected cancer hospital policy was not to remove a healthy breast. Apparently having a mother and sister who had breast cancer (another sister was diagnosed about two months after my surgery) and the fact that this was my second rodeo with the beast, wasn't good enough! I had DIEP reconstruction. I was on Letrozole for six months but didn't like the side effects, so I stopped it. I am pretty much anti AI/Tamoxifen for me. (I am not against others taking it, I am only talking about me for reasons I won't get into.) I did go through genetic testing with a counselor, and I do not have any defective genes of the 54 they tested.
Fast forward to this past summer and here I am again! At first, I felt mentally okay, I wasn't in shock as I was with my first two diagnoses, and surgery in October seemed light years away.
I did write to someone at the cancer hospital where I was treated the last time to let them know that because I was denied a bilateral mastectomy, I am now facing another mastectomy. I let them know in a very professional way, how many people are being affected now, including the special education students I work with who will be without support while I am out on disability. They sent me a response and said they were looking into it and will get back to me in writing within 30 days. They sent it certified mail, which indicated to me that they are doing something and might be concerned about a lawsuit? I just don't want another woman to go through what I am now, because of their antiquated philosophy. I want them to at least have a conversation with their patients and not just say no! * Ironically, what sparked my letter to them was receiving an invitation to a survivor event on the very day of my upcoming mastectomy!
My co-workers keep marveling at my positivity, and I give them the "politically correct response of, it is what it is, I survived this before, I will do that again."
It is true, but I leave out all the turmoil and mental anguish I feel. I am not bothered by the terms journey, or ordeal. I don't care how anyone labels it, it sucks!
I am going to call my nurse navigator and ask for a referral to meet with a social worker or therapist for mental support, because I am not in a good head space going into this surgery. I am very thankful I transferred my records to my local hospital and met with their breast surgeon, prior to this recent diagnosis. In many ways, my local hospital is way more progressive than the cancer hospital was. My plastic surgeon specializes in lymphedema! No one at the cancer hospital specialized in that! I chose my doctors this time, unlike the last two times when I was assigned doctors, so at least I have established a trust in my doctors.
Still, I feel as if I am a mental mess. I saw my PS this past week for my pre-surgical eval and was surprised that my mastectomy with tissue expander is an outpatient surgery. I immediately felt as if that this means they don't think it is a big deal, not important enough for a hospital stay. Crazy right? I can't shake that feeling. I already decided if anyone calls between being released and seeing my PS for my follow up visit, I am not answering the phone. I feel as if they are really interested in how I am doing, they should keep me over night! After a lot of thought, I realized I would rather be home than there anyway, but I still won't answer the phone if they call. They can leave a message. I also won't call them unless I think I am going to die. Then I still wouldn't call them, I would go to the ER. I can't shake the feeling that I must be tough and any pain I get I need to suffer through. Why??? I don't know where these thoughts are even coming from.
I think because this is my third time, I think everyone thinks I am a pro at this and don't need the support that first timers get. I don't want to go through all this again! If I say that to anyone (family members) they just tell me to be thankful that I have great doctors, etc etc. Why do people think "being thankful" for something in the counterbalance for fear and anxiety? Sometimes I think they don't know what to say or feel either.
6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+
12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2-