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Likely metastatic lobular cancer: How do you deal with fear, PTSD?
Hi there. First time posting. I had ILC in 2011 and every kind of tx there was-chemo, lumpectomy, radiation, BMX, Tamox and Aromasin (currently 12 years on an AI). I've been experiencing urinary incontinence and urgency, and a CT in August and an MRI (done by Mayo) in Nov. confirmed there is something going on in my ureter as well as my abdomen. I had a cystoscopy last week which looked mostly okay-a small area needed a biopsy to rule out, but the MRI was shocking because of the abdominal thing (highly suspicious) and a "lesion" on my iliac crest. My NP urology said the doc didn't think it looked like bladder cancer and I've been forwarded to the Breast Cancer Center at Mayo for care. I had the PET at Mayo Phx yesterday and I'm terrified that when I see my doc at Mayo for results on the PET and the CA 27-29 on Friday, I'll have lit up like a Christmas tree.
I have extreme PTSD from losing my late husband to cancer, my own cancer dx, and now my husband's advanced prostate cancer.
I need some hope and reassurance that ILC 4 isn't as bad as I read on Dr. Google. I know not to do it, but PSTD brings hyper vigilance and catastrophic thinking, and I started Swedish Death Cleaning yesterday because I am so worried my oncologist will tell me there's nothing they can do and release me to hospice.
I'm 65, live at altitude and hike/hot yoga/Pilates apps 5 times a week, I don't smoke, drink to excess, cholesterol good, I'm lean, in great health, the best of my life, actually. All CBCs were clear in summer during my regular check up, I've had no pain anywhere, no blood in urine, but I was dx with IBS in July and I wonder if it isn't related to this suspicious area they can see in my abdomen.
I need some hope that I have a few years left.
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So easy to get ahead of ourselves in our hyper vigilance state; a cancer diagnosis IS traumatic and ongoing fear persists (PTSD). However… take a deep breath and give thanks for THIS DAY… and each day is THIS DAY.
I’m hoping that the scans will provide any information needed to take the next step… whatever that is. If treatment is needed REMEMBER that recent research into BC is ongoing at a furious rate and SO MANY TREATMENTS are available and more coming down the pike. Being at MAYO is a huge plus as well.
Keeping you in my thoughts today as I give thanks for the grace in my life and in my personal journey with BC.
🌸
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10 ReactionsHello @rivergirl I have been thinking of you this morning, and hoping your appointment went better than you feared. I know you are in good hands at Mayo.
How are you? Did you get your pet scan results on Friday?
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5 ReactionsI know this is so scary for you. The wait for test results is horrible. I was shocked as well to learn I had Met breast cancer after an original "mild" diagnosis 4 years ago. Had all the appropriate treatment. I am healthy active and a runner. I started my treatment 4 months ago for the met in my pelvis, femur, lower back, and humerus. Treatment consists of IV and shots one a month and daily pills. My life has not changed at all with this diagnosis and whatever they find out, your life will be the same as well with treatment. PLEASE try not to over think this. Easy to think the worst but as said in another thread there are so many options now for treatment so if one treatment regime doesn't work the doctors will try another one. There is so much life now living with a breast cancer diagnosis so go out and live your wonderful life. You got this!!!!! Hugs!!
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6 ReactionsDear @rivergirl I too have been thinking of you. I thought it important to write you regardless of the news you might have learned. My BC metastasized just over 4 years ago and well not only am I here, but I can say that I have had a really good 4 years. I chose to “thrive”, not just survive. Yes it has come back in these 4 years, some meds have not worked, and we have pivoted to new meds that kicked it back. My docs liked that I was fit, otherwise healthy and motivated. These are your attributes. You have kicked cancer before and will tackle it again if it comes back. It is okay to recognize that the road could be hard. Life can be hard whether we have cancer or not. You have experienced that. But your glass is half full! Your reaching out is one small step - we have your back for the rest!!
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14 Reactions@rivergirl
Fellow MBCers have written wonderful things already.
I hope you can find strength in their writings just as I do. I'll be thinking of you.
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11 ReactionsI am new to this, and I’ve just finished reading all the wonderful notes. It has touched me tremendously, such strong women out there I’m feeling like a broken bird right now, but reading all your notes has given me strength & guidance. Praying and wishing for good outcome with your test results.
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8 Reactions@rivergirl
The waiting game is rough. Hoping you received good news. My stage I BC was treated with a mastectomy then returned in my chest wall/pectoral muscle 7 years later. Very aggressive this time but I had surgery, radiation and have been on targeted MBC meds for almost 3 years. So far so good. Still have good quality of life. Lots of hope and good days ahead for you. Hoping we’ll hear from you soon. Praying for you.
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8 ReactionsHello. I’m praying for you and your anxiety and your situation. Can you tell me if you were diagnosed with invasive lobular carcinoma?
Hi Karen, that's a very apt description to feel like a broken bird. Have you just recently received the diagnosis of breast cancer? Do you have metastatic cancer?