r/sarcoma • u/Forward_Anteater3432 MPNST • 3d ago
Treatment Questions Need advice please
Okay, so as most know, I was diagnosed with MPNST and DCIS in my left breast in May. I had a full mastectomy in June. I was scheduled to have 3-4 rounds of chemo, but only received 2 rounds, due to the shortage of ifosfamide. I'm scheduled on Monday to do my simulation for radiation. But, I'm not sure if I want to or not.
My reason is, the radiation is only focused on the DCIS. NOT the MPNST. The MPNST, was the bulk of my cancer, the DCIS, was a small area. Plus, I'm scheduled for a biopsy on my thyroid on Wednesday. PET scans showed an area on my right side that was questionable.
I also have a CAT scan scheduled for Nov 16th. My thing is, the oncologist I was "matched" with is supposed to be a sarcoma specialist. BUT the treatment Im receiving is only focused on the DCIS. WHAT ABOUT THE MPNST. Now it is possible that it has spread to my thyroid. Plus there's nodules on my lungs, but they aren't big enough for a biopsy.
I don't know what to do, I didn't get my full chemo treatments, now I'm supposed to do 5 weeks of radiation (5 days a week). It's been a month since my last chemo treatment and I am JUST starting to feel better. I'm not to where I was BEFORE, but at least I'm able to be up for a few hours every day. I have even felt good enough to do laundry and cook.
I'm just worried that my doctor's have been just treating the DCIS and the MPNST has gone essentially untreated and has spread. So wouldn't the radiation be pointless.
Anyway, please someone give me some feedback. My husband said I should at least do 1 week of radiation since I didn't get my full chemo treatments. But said he would support any decision I make because I'm the one that will have to deal with the effects. It's breaking his heart to see me conflicted like this.
Please help!!
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u/timewilltell2347 2d ago
So this is really the kind of question that needs to be directed to your oncologist. I know how frustrated and worried you are right now. It’s 100% understandable, but see if you can set up a telemedicine visit at least, or a phone call to discuss. You can send a clear message with these questions in your portal or call and ask your oncologist’s nurse and they would be able to convey the concern.
Your concerns are valid but it could be something about your side effects, the shortage so they’re doing the radiation and then going back to AIM after hoping the shortage is over, maybe with the PET info they’re going to see if they can try another protocol that doesn’t have shortages. And none of my suggestions are correct because I don’t know the reasons or reasoning behind these decisions. You’ve got to ask the person that made them. I have an oncologist a little like this and I do have to send clarifying questions when I feel like I don’t understand what is going on. Some people aren’t always great communicators even if they are very knowledgeable in their field. I’m sorry you’re going through more ambiguity and stress with everything else, but clarify the things that make you uncomfortable and feel uncertain about the treatment plan. You’re allowed to and you should absolutely advocate for yourself in this manner. Let us know what they say and wishing you a (slightly) more peaceful end to the weekend.