Recurrence after 12 years (even with BMX)
I was diagnosed and treated for ILC Stage 2b 12 years ago. Had BMX and took Tamox and AI for about 6 years. I was told 1-2% chance of recurrence in chest wall, etc. Low and behold, a lump under my arm on original BC side. Biopsy confirmed not a lymph node but ILC tumor. Surgeon planning to remove tumor and potentially do axillary disection if any suspicious nodes. Awaiting PET on 7/21 to determine if spread elsewhere then no surgery. I haven’t found many stories of this type of recurrence and am wondering if anyone has feedback. Thank you.
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Hello. Sorry to hear of your recurrence and hopefully it is confined to that single tumor. I have not had a similar experience but recurrence is always a possibility with freakin' cancer. Take care and let us know what you learn from the PET. Here's hoping that you get the best possible outcome.
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PET scan didn’t pick up the tumor so hard to know if there is any distant spread. The PET 12 years ago was the same, didn’t even see the cancer in breast, same with MRI.
Surgery scheduled for Aug 1st. Hopefully no lymph node involvement. MO & surgeon recommending radiation which I may decline. Will restart AI.
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We're so sorry to hear this, @newfmamainoregon. We're thinking of all and hope your surgery goes well and your recovery is swift.
The Mods
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Initial ILC 2005, 2 areas in same breast. Needed mastectomy but opted for bilateral mastectomy with immediate reconstruction. No chemo or radiation. EASY recovery thankfully! 5 years of various AI’s.
17 years later ( 2022) diagnosed with recurrence in skin/ chest wall. 2 surgeries to get clean margins. Completed 1 month of radiation.
So far so good but I opted out of AI’s this time since they gave me osteoporosis the first time around. I am receiving high dose IV vitamin C now.
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It’s been a rough year for me. Last August, I elected for surgery and regretfully, radiation to chest wall, clavicle and axilla. Surgery was rough as cancer had grown into chest wall muscle. Radiation for 25 days was rough too but healing happened within about 30 days. Unfortunately, I ended up with radiation induced pneumonitis/organizing pneumonia. It took 40 days of me being sick with fever, horrible cough and difficulty breathing (given 5 rounds of antibiotics as they thought it was pneumonia). Finally, CT scan done and confirmed the inflammation was radiation induced. I spent the next 75 days on high dose steroids and thankfully symptoms mostly abated by July.
Fast forward to September and started having issues with right arm nerve pain and electrical issues along with neuro issues. Plus my Signatera blood test came back with positive number for ctDNA (circulating tumor dna). Had a brachial MRI that shows potential radiation induced plexopathy and will have a brain MRI on 11/4. I restarted Letrozole about 10 days ago and side effects are rearing their ugly heads. Onc wants me to also consider adding Kisali, which I’m currently reading about on the BC forum. Onc said cancer is growing somewhere, we’re just not sure where yet. She is recommending I get a FES PET but I can’t do it in my home town and am not able to travel without finding someone to take care of my husband and horses.If anyone has any experience with Kisali and Letrozole, please share the good, bad and ugly.
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newfmamainoregon, I’m sorry you were got by rads as I was. I ended out with radiation induced pulmonary fibrosis (skipped the curable pneumonitis,) damage to the brachial plexus and other nerves in the radiation field, esophageal dysplasia and a previously excised thyroid goiter which regrew larger than ever in six months. Almost three years later a lytic lesion was found in my acetabulum. The bone tumor radiologists decided it was a met or a benign lesion mimicking one (5% chance.) Unfortunately the ortho oncs determined there was a >70% chance my hip would be irreparably broken by a biopsy.
I did have a FES PET looking for something else to biopsy even though the radiologist at MSK who supplied the tracer didn’t think the deep hip lesion would receive any of it. The only thing that lit up was the RIPF in my lung; I learned pulmonary fibrosis has estrogen receptors. Also, a FES PET does not show liver mets so while it can be useful it still misses about 13% of ER+ tumors
A nodule in my goiter is deviating my trachea so to get radiofrequency ablation for that I needed a benign biopsy. I haven’t heard back in over a week so a sample was probably sent for genomic testing. The IR who did the biopsy said he thought there was a possibility of breast, thyroid, esophageal, myeloma or some other cancer caused by the radiation and wished me luck on my “medical mystery tour.” I have another MRI in a month to see if that hip lesion has grown. My MO doesn’t want to treat until she knows what is going on even though my white blood cell count is sky high. It could be something else causing inflammation.
If the Signatera picked up your bc ctDNA the Kisqali and letrozole should help. At least you are doing something. I’m just hoping that I trend towards the low probabilities since all these problems from radiation had a 0.1% chance of occurring. I hope you get some answers soon. I feel better knowing I have company.
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@maggie15 Thank you for sharing your story. Oh my goodness, what you have been through is criminal. Thank you for the insight on the FES PET. MO said a CT scan would most likely pick up something in the liver if necessary (hmmm). I was very angry that I was not informed about the risks of radiation. Isn’t it special to be part of the 0.1% group?
Unfortunately, the C4/6 Inhibitors have a risk of pneumonitis and pulmonologist said Letrozole could also trigger the RIOP. I pray that the pulmonary fibrosis isn’t lurking as I also have skin/tissue fibrosis in the chest area. Sigh….
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@newfmamainoregon, Thanks for your reply. You are wise to consider the SEs of any drugs you take. The one positive thing about my experience is that my RO referred me to an ILD specialist pulmonologist who is looking out for me now. His rules are no respiratory infections, no intubation unless it's a medical emergency, and no drugs that cause ILD. There is a website run by a French pulmonologist that catalogs meds toxic to the lungs along with known SEs and levels of toxicity. Unfortunately many drugs for bc are on it but sometimes you can find one that is not as bad as the others.
https://pneumotox.com/drug/index/
AIs and CDK4/6 inhibitors are less dangerous than tamoxifen and other drugs. Kisqali and Ibrance are safer than Verzenio. It's all a balancing act and radiation damage just makes it harder.
Initially my pulmo gave me the "get your affairs in order" talk since he didn't know if the RIPF would go to my other lung. When I got a call from him several months later saying he thought I would see my next birthday I decided I would just look at every day going forward as a gift and quit worrying about what might wipe me out, something I never thought I could do. My pulmo nixed the radiation for my hip lesion that my MO proposed and told me not to have radioactive iodine for my thyroid. Being able to breathe trumps cancer progression.
I sympathize with your situation since my DH can't stay alone overnight (at least he can still accompany me when I travel for medical appointments) and we have owned horses for most of our lives. Since DH broke his elbow five years ago and can no longer ride we have no horses to care for but I do miss them. There are two Pulmonary Fibrosis Centers of Excellence in your region if you ever need an ILD specialist, The Oregon Clinic in Portland and U of Washington in Seattle. I hope the meds you decide to take are effective and kind to you and your MO is able to locate the source of the ctDNA cells.
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So sorry for all you're going through. While this is an MBC thread, you might find it helpful in learning about the side effects of this drug combo:
Ribociclib/Kisqali with Letrozole - Any one on this combo? - Page 47 — Breastcancer.org
We hope this helps!
—The Mods
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