Here I go again
I was originally diagnosed back in 9/2023 on my left side, 13 MM stage 1, grade 1 DCIS/IDC. Had lumpectomy with 20 sessions of radiation. Tried Lupron, which gave me hell for almost a year. Cant deal with Tamoxifen. Finally did a lot of holistic stuff and trying to live life again.
Thought I was doing good and getting some semblance of normalcy back. BAM, found a 4 MM foci on the 8/2024 MRI. Label as Birad 3, redo in 6 months. Just had MRI, it was now a 8 MM, label as Birad 4. Just had ultrasound guided biopsy on Tuesday. Biopsy results, just now says, DCIS with intermediate grade.
Both the 2023 and current diagnosis were 91-100% ER+/PR+. Waiting to hear back from the surgical team. Originally I had an appointment to see oncologist upcoming Monday as a follow up, guess we have something else to talk about now. Life sucks. I just want my life back, a real life, not this shitty mess call Cancer.
Debating if I should have DMX next and/or removal of ovaries at this juncture.
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Oh @zen1028 we're so very sorry to hear this news. We wish you could have your life back, too, and are frustrated right along with you that you're facing treatment again at all, let alone so soon!
If you haven't seen this thread before, it might be helpful to you in making your surgical decisions:
We hope this helps. Sending big hugs!
—The Mods
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Thank you @moderators . Just read thru. I am wondering if others that had DMX and decided to go flat, could you let me know if you have had any side effects. Like random pain, lymphedema, etc. Also, what type of monitoring are there if there are no more mammograms, MRIs? Ultrasound? If there are any suspicious lumps, what next?
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This is another great thread of members discussing their decision, side effects, etc after going flat:
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Hi
Going to use this thread to document my 2nd instance of breast cancer. I finally went thru with the lumpectomy on November 7th, 8 month since diagnosis, without sentinel node biopsy. I had several conversations with my surgeon, my medical oncologist, and my radiation oncologist to go over the SOUND study and also base on my ultrasound and MRI imaging of my lymph nodes. Both imaging didn't show any issues with my lymph nodes. After all those appointments we moved onto surgery without any lymph node removal. Right now my recovery is really good and moving onto the next steps. My medical oncologist wants to have me on medical menopause, which after my horrid experience with Lupron, I said NO. Then my only option is tamoxifen , which she wants me on the full dose (20 mg) for 10 years. That is a LONG time and I don't think the toxicity of 20mg is good for my body. So if I were to start, it would be at 5 mg and see how my body tolerates it.
As for radiation, I am also hesitant on this as there was a recent paper out from the University of Chicago, that can cause more tumor growth instead. Reason I came across this or search for this is related to my long delay in between diagnosis and surgery.
After initial diagnosis, I wanted to move fast and get double mastectomy. My husband was really against me on this, even though he kept on saying its your body your choice. So I countered on what do you want me to do then or what can we do. He pushed me to try chinese herbal medicine and where I pushed bas asking where can we find a good one in our state. He asked around, and his parents gave him a name. I saw this herbalist twice before he went back to China. He was an exchange student here and have graduated, and made the decision to leave due to current US political environment. In my meeting, there was pulse read, moxa treatment, and acupuncture with a herbal formula. He said he could help me purge this tumor in 3 months. He has a theory on why I have these happening in my body and once that blockage is cleared, my body will feel better and better able to deal and purge with these toxins. So I follow his advise diligently until August (we still communicated via WeChat after he went back to China). I had 2 more ultrasounds and I did not have the miracle that I was hoping for, tumor still there but without much growth via ultrasound imaging (orig 8 mm in March, 10 mm in June, and then 8 mm again in Aug). So the herbs didn't help me in terms of the tumor size but my mental state was getting so much better. I was able to stretch my acupuncture sessions from 2 weeks to 3 weeks. My overall anxiety and depression were better. I also changed my weekly therapy sessions to bi-weekly. All without side effects such as nausea, dizziness, lack of appetite, etc.
So that was the good, then in September I finally reached out to another herbalist in California and we have been having biweekly telehealth sessions. He gave me a new formula and have a different theory on where the blockages are. He did not give me a statement like the prior herbalist but rather he wants to get my body as healthy as 'cleared' as possible going into surgery. His formula make me so much better than the prior one. I have felt my anxiety and panic attacks lessen more. And then as an added bonus, the brown spots on my face have cleared a bit. I asked about this and his response was that the clearing has started and that was a result.
So now that surgery is done, I have been on his 'recovery' formula since a week after surgery and I think it helped on the healing. On our next appointment we should be moving onto the cleanup part. He was the person that pointed me to the article on radiation.
The radiation oncologist is going to see if she can order the DCISionRT to see if it can tell if I can benefit from radiation. There are no specific correlation/causation that the radiation could have cause a tumor to be on my right side as there were no MRI prior to surgery back in 2023. The tumor on the right could have been there since then. I have a CT Scan where there was a 3 mm something on the right lung. I dont want to risk that possibility of what could be. So I was hesitant on radiation this time and thus why we are now awaiting on the DCISionRT results.
One thing that my medical oncologist noted was she was a little surprised that there were no stage 1 on the pathology report. It was almost 8 months since biopsy and it was tumor grade 2, so I can see why she did think it could have moved onto stage 1. The pathology report did not note the size but said microinvasion noted, no actual invasion, cleared margin, ER/PR +, tumor grade 2.
I hope that my experience in this can help others understand that your care is in your hands. Advocate, push and ask for what you want as it is your care, your body, and your decision. The one thing to be mindful on is that you have to and can live with whatever decision you make. I am kind of at peace. If I can have at least 7 more healthy years, I think of that as a blessing/miracle. By then, my youngest would have graduated high school. I would love another 20 or 30 years but I am ok with 7 or 10. I meant healthy as living as me right now, without any toxins or side effects that make me NOT me like what lupron did to me in 2024. I cant live like that and not cause misery to not only myself but my whole family. That is not living, but a true living hell.
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