Looking for others with low risk, less than 2cm, IDC stage 1 grade 1HR+ HER2- on endocrine therapy
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hi Pam
Thanks for responding. Wow you and I had very similar cancers. Im always cautious with any pain or symptoms to get them checked. Once a person has had cancer I think our brains worry it will return. At least mine does.
yes my cancer was found on ultrasound and was mammogram silent. But I am getting both mammo amd ultrasound done every 6 months I alternate them every 6 months. So far all is ok.
I hope all continues to go well for your treatment.
Can I ask one more question? How did you find your 2nd cancer? Were you having CT yearly or did you have pain?0 -
@jons_girl It does sound like we have had a similar early stage situation.
Prior to my 2009 diagnosis, I had been seeing a breast specialist for 6 years with annual mammograms and 6 month sonograms. They had been watching a spot all that time (unbeknownst to me) that never changed—until 2009 after going on Seasonique birth control pills due to issues with my period. After only being on the pill for 3 months it was time for my mammogram (nothing seen) followed a few weeks later by my ultrasound (margins no longer looked smooth). So I had a needle biopsy and was diagnosed with ER+/PR+/HER2- Breast Cancer. It was determined that the cancer had been growing for about 10 years. Interestingly enough, the last time I had been on birth control pills was for 12 months about 10 years prior to the 2009 diagnosis. I strongly feel (in my case) that the estrogen in the pill caused the BC to start when I was on it for 12 months. Then I didn't take it again until 10 years later and the 3 months of estrogen caused it to break through the duct. Just my theory….
Following my 2009 diagnosis I continued seeing my breast specialist for 8 more years with annual chest x-rays, biannual MRIs, cancer marker tests, etc. Everything was super clean.
Now, to answer your question regarding tests vs. pain: I wasn't having any sort of tests after 2018. However, in January of 2024 I started to have some pain in my upper sternum that radiated to the right side. It lasted about a week and then was gone. I thought it was some type of rib muscle pain due to a chronic cough I had. In February it happened again for a week. Finally, in May, I had a chest CT and it stated "highly suspicious for metastatic breast cancer." Did I freak out, or what? A week later I had cancer antigen tests. They were slightly elevated. Had I had those tests 6 months earlier they would have been normal.
And, since I have been struggling with long Covid since 2020 and had so many strange symptoms from that, it was difficult to determine what was what. Since 2020 I have been tested and scanned for so many things. I even had a chest CT in January of 2023 when I went to the emergency room because I thought I was having a heart attack. So, when I started to complain to my PCP in 2023 about chest issues, he ordered upper GI tests and a PFT, etc. He didn't think to order another chest CT since I had just had one. But, in looking back at the January 2023 chest CT, if a radiologist looks very closely, he can see that the cancer was just starting in my sternum. However, it was so negligible that it wasn't noticed (they we looking for heart problems).
So, that's my story!
I've read that approximately 30% of early stage HR+ breast cancers return in 10, 20, even 30 years. I guess that's me. However, 70% never have a recurrence. I hope and pray that's you!
I do believe that the Signatera (ctDNA) test, which is quite new, is a good monitoring tool. They didn't have that back when I was first diagnosed. There are a lot more options for monitoring these days.
Right now I am in remission and my last two PET scans were great and my last two Signatera tests were negative. Treatments today are so much more sophisticated than even 10 years ago.
I wish you a life free of any more cancer!
Hugs, Pam 💗
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Hello.
I am 40 years old. I was diagnosed with breast cancer on the right side, retroareolar IDC, moderately differentiated, ER 100% PR 1% min 10%. I was diagnosed on November 10th. Since then I feel like I can’t breathe. I’m reading all kinds of things, and I’m afraid of taking hormone therapy. Seven years ago I had surgery for endometriosis and had to take hormones for 3 months, and I felt very bad. Ever since I found out about the diagnosis, my whole body hurts, probably because of stress. My thoughts are racing and I feel almost like I’m constantly in a state of panic.My experience with oncology was quite negative. I wanted to find out as much as possible and learn about alternative options regarding the whole treatment, and they didn’t offer me any opportunity for discussion at all — neither the surgeon nor the radiologist. I still don’t have a medical oncologist assigned. I read your stories and it’s terrible for me to see that some of you had a recurrence. The doctors keep telling me not to complicate things because I have the most favorable type of cancer, and that I should just follow the proposed treatment and that it’s 99%, but unfortunately I see that it’s not so simple.
They also determined that I will have surgery, radiation, and 5 years of hormone therapy with Tamoxifen.
I’m also worried about blood clots and pulmonary embolism from hormone therapy. In general, I’m not a fan of pills and I really don’t like taking them. For two years I’ve wanted another child; I know it’s a bit late for me, but I still want one. Now this happened, and the surgeon told me that if I’m thinking about that, I’ll be “feeding” the cancer and that it’s very irresponsible on my part.Maybe I’m writing everything a bit incoherently, but that’s how my thoughts are at the moment, and every day I’m barely holding myself together. How did you accept this at the beginning and learn to live with the fear? How do you manage to stop thinking about it and continue living? What about social life, food, three glasses of wine when you celebrate, an occasional cigarette? It feels like I can’t even imagine my old life anymore…
Did you all have a breast MRI? I went for a self-paid mammogram where nothing was detected, and then for an ultrasound where they found it. But they didn’t do a breast MRI for me, nor did they even mention it, even though my right breast is denser (category C) and the tumor was harder to detect. (8 mm in size). Should I request it?
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Hello @nicovelvet. I’m sorry you are joining us. Welcome though. We understand what you’re feeling. As I read your post I’m nodding … remembering all the anxious thoughts that flood our brains in the beginning. Somehow we learn to put one foot in front of the other, taking it one appointment at a time, one decision at a time, gradually adjusting. I was also early stage, IDC, on my right side, with dense breasts, category C. My breast surgeon did not recommend an MRI and I was too nervous to speak up and ask him. I never did request one and perhaps because the recommendation for me was a mastectomy and not a lumpectomy, it wasn’t considered necessary. I would have liked having the assurance that nothing was amiss on my left side though and I wasn’t convinced that the mammogram and ultrasound was enough. I’m hoping someone more knowledgeable will comment on this. I’ve had so many ultrasounds and several mammograms that now I don’t feel worried. I suppose it can’t hurt to request an MRI and if they say no, ask for an explanation as to why not.
I just love being told we have a “favorable” type of cancer. Ugh! It’s not exactly comforting! Yes, it’s well researched and treatments have been around for a long time and they are effective, and oncologists are super familiar with our type but still, it’s scary to us and brand new and a lot to absorb!
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