Need a little encouragement, advice, feeling a little sorry for myself and frustrated...
So, I had a mammogram in June (first if 4 years, I know, not the best but I hate doctors). Came back that I needed to follow up now with another mammogram and ultrasound. Had that done in July with a reading of benign breasts with moderate fibrocystic changes. BIRADS 2 - BENIGN.
I read every "cyst's" dimensions and they were all small (1.0 cm or smaller), except for one. 5.3 cm X 3.4 cm X 4.5cm. This one had vascularity, also. I am a nurse (which I don't tell most people) and I thought it odd that a cyst would have vascularity, but Dr. Google says a cyst can have vascularity, so I let it go. Months later… like in October, I noticed that my right breast was asymmetrical compared to my left breast. I brushed my hand over it lightly and found a large lump that I had not ever seen/felt before. I went to my primary care provider who re-reviewed my mammogram results. He performed a breast exam and told me he felt no masses, that my pectoral muscles were tight and that I need to purchase more supportive bras, but did notice my nipple retraction and referred me to the local breast center.
The doctor at the breast center did a breast exam and immediately said I needed a needle biopsy, which could not be performed that day due to the fact that I am on a blood thinner that needs to be held. She also informed me that her opinion was that I had Inflammatory Breast Cancer and that it had "no doubt" been cancer when I had the mammogram in July. She did a punch biopsy of the skin on my breast that day and we waited for the results before we moved forward. The punch biopsy was benign. Of course, she told me not to go and google the diagnosis, which, who could not, and I did. It seems very scary. Especially if it is as aggressive and everything reads it is. I just had the core needle biopsy Friday, and it is torture waiting for results. The mass feels much larger than it was when I found it.
I feel like a huge ball has been dropped. If it is inflammatory breast cancer, it has been aggressively growing unimpeded since at least July and who knows for how long before that. I feel this is urgent. I feel like I should be a priority but the doctor, I feel has drug her feet at each step. I know there haven't been many steps yet, but she told me she would call with the results the minute she got them, but the results were in my patient portal on a Wednesday, and she didn't call until Monday, after I left her a voice message. It's the holidays, of course, so everything is slower, the needle biopsy was put off for two weeks, due to holiday and she apparently only does procedures on Fridays. Now I have to wait for the needle biopsy results. She tells me, just from the ultrasound images, she is certain it is cancer, so, why can we not plan another test or a meeting with other physicians, etc., while waiting. Or at least have them set up for as soon as the biopsy results come back. Cancel them if we need to and it isn't cancer.
Nurses make the worse patients. It doesn't help that I worked hospice for about a year. I've seen the devastation cancer can have on a breast that hasn't been removed. The ugliness, the pain, the sheer torture some of my patients have been in and I am in panic mode. I'm scared because I don't know what comes between the diagnosis and the end. I'm sure there's more than just diagnosis…. death. But I have no family who has ever had cancer, and I don't know what to expect in the in between. Is it going at the pace it should? Are they dragging their feet? Do I just need to calm down and trust the process? What tests are next? I know I can't have an MRI, I have a mechanical heart valve. (I also work in a prison…) We send patients out for PET scans frequently, but what else?
Everything seems like it's in slow motion and I can't think of anything else. I go to work, and this is what I think about, I read and my mind drifts back to this, I crochet and that opens my mind up to just think about the what ifs. I find that I'm crying a lot, over the littlest things.
Am I the only one who has these thoughts? Fears? Confusion? Any advice besides get a grip, because I'm trying, I'm just not very successful.
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Dovesong, I'm so sorry that you find yourself here. It sounds like whomever read your mammogram in June dropped the ball, but maybe not. I was 57 when diagnosed and I had never had a mammogram-just kept putting it off. It was asymmetry that tipped me off that something was wrong. The initial testing/diagnostic period is definitely the worst. The anxiety kept me awake all night long, I wondered if I was going to die, and I shared your feelings that the doctors were moving too slowly. But they weren't. It can take weeks or in some cases months for all the tests to be completed before they can move forward with a treatment plan (if it turns out to be cancer).
They will not schedule appointments "just in case". That would completely clog up an already strained healthcare system. But breast cancer isn't a medical emergency. There is a pretty wide window within which to get treatment started and have it be successful. What tests come next will depend on your biopsy results. For me it was breast MRI, chest and thorax CT, and nuclear bone scan because I was Her2 positive (no spread, thankfully). The process is followed one step at a time, and it can be very frustrating because each step involves waiting.
Eventually, you will get your treatment plan (if necessary), and then you will feel better. Let us know your biopsy results, as there are groups here for every situation.
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I do not know where you are being treated, but i know my hospital has appointments around the hospital. If your dr can only do the procedure Friday is there another doctor you can see? I only have my experience and i went from a Mammogram to a few days later a biopsy and guided ultrasound. Then with in 2 weeks a CT scan and an MRI. My chemo began 2 weeks later.
I would hope you call to advocate for yourself. I had ER+/PR-/HER2+. My 5cm tumor only shrunk 1/2 with 13 rounds of chemo. It continued to grow.
dovesong- as a nurse you likely are not advocating as much as emphasizing with the medical team. You need answers. My breast cancer was treated quickly and efficiently. They fit me in. I am at a well know research hospital, so that may be why. Please call and pester. Take care of yourself.
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@dovesong, we're sorry for what you're going through… but glad you found us. As you can already see, this community is here to help you, and there are many members who can relate to your feelings of uncertainty and anxiety.
Sending you strength and comfort as you await your results, and please, come back to let us know how it's going.
Warmly,
The Mods
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So, the doctor called me at 8:30 last night. I do not have inflammatory breast cancer…good news. I do, unfortunately, have invasive ductal carcinoma, grade 2; ER+, PR-, HER2+. When I went for my biopsy last week, my mass had grown more than double the size it had been in July… so big they couldn't even measure it by ultrasound because it didn't fit on the screen in one view. Worrisome, but I'm glad I have answers and it is a more common cancer that I hope is easier to treat with more positive results. She offered answers to my questions, that I could think of. She is setting me up for a bone scan and getting me set up for medical oncology before my appointment to see her on Monday. I am relieved to have a diagnosis and to know the ball is starting to roll the right way. I am also anxious, already thinking about treatment side effects and etc. Chemotherapy is so toxic to the body that I worry about my already taxed heart, etc. But we'll worry about that when the time comes and I get more answers Monday. Thank you all for your responses and support.
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sending you gentle hugs @dovesong ! We hope you can "turn off" a bit this weekend to get a bit of a mental break to best manage Monday. Things will get easier once you get a first plan in place. We're all here for you.
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