Background: 54 yr old female. Thyroid cancer in 2014, heart disease/open heart surgery 2016, Diagnosed with Multiple Sclerosis in 2017.
My mom passed away 25 yrs ago at the age of 49. She wasn’t feeling well, went to hospital on a Tuesday, chest X ray showed nodules in her lungs. Two days later, on Thursday she had a biopsy, she died that night. An autopsy revealed that her body was full of cancer, the primary tumour from her lungs.
My journey so far. I have had two CT scans and a PET scan.
- I have two 13mm nodules in my right upper lung both Hypermetabolic, irregular, somewhat spiculated. PET scan indicated one nodule absorbed the tracer with SUV of 5.6
- Extensive mediastinal and periportal lymphadenopathy in addition to a splenic focus
- A focus of uptake in the descending colon 15mm with SUV of 10
I had a biopsy one week ago and am awaiting the results. The radiologist told me that if the biopsy comes back inconclusive, they could try a second biopsy or remove the nodules. Last week’s biopsy was one of the most painful experiences I’ve ever had. The Dr accidentally hit a nerve and I had severe pain for the next 24 hrs. I do not want to go through that again.
Given the above, if the results are inconclusive, is it unreasonable to want the nodules removed?
I don’t know anyone that has been on this journey, that’s the reason I’m reaching out. I’m hopeful that the biopsy will be conclusive but I also want to be prepared if a diagnosis isn’t possible.
Thank you 🙏🏼
I understand your concerns given your mothers situation with nodules and cancer. Let's hope the biopsy comes back with some conclusive information for you to move forward with. Either way there is a risk/benefit analysis needing assessment by your medical team and yourself. If the nodules are not cancerous, is there a greater risk in removing them vs. leaving them for monitoring. If they are cancerous, is surgery the first and best option for your situation vs systemic treatments, radiation etc…. These are points to consider for yourself and discussion with your medical team.
I wish you well and hope the biopsy gives you the answers you need to move forward with.
Thank you for your reply.
I understand that there are different ways to move forward depending on the diagnosis of the biopsy. I’m only wondering if the biopsy is inconclusive, would it be unreasonable to request that they be removed.
I‘m not comfortable leaving them, given everything else that is going on and given my own history with cancer and my mom’s and would rather have them removed and then know for sure. Waiting three to six months for another CT scan feels like an incredibly stressful wait time.
Hi Carrie, I agree it's not unreasonable to requests the nodules to be removed if found not to be cancerous. I think your medical team will have that conversation about the risk and benefits involved in doing so if they are not cancerous. Is your medical team aware of what your mother's situation was? This may help to frame your desire to have the nodules removed. Having dealt with cancer twice myself, I totally understand the apprehension and stress of the unknown and awaiting further testing while monitoring.
Hoping you get the answers you need to move forward.
Thank you so much for your reply and for sharing your experience. It feels good to know that someone else understands how I’m feeling about all of this. My follow up appointment is tomorrow morning and I will know what the biopsy shows. Fingers crossed that the biopsy is conclusive, either way.
Deep breath…I’m almost there 😉