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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Hi Pam
Thank you for sharing your story and answering my questions. I’ve been swamped with church and farm work. I apologize it’s taken me a while to respond.
My onco ordered the signatura test for me so waiting on results.
I hope all goes well with your healing and have a wonderful Christmas 🌲♥️
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nicovelvet:
I am sorry you have joined us here in this forum. Never want to hear the C word. But it’s reality for a lot of us in this world we live in.
If you think you want a MRI push for that. One thing I’ve learned is drs are WAY too busy to give good care these days. It’s not their fault. Standard of care is driven by numbers and insurance company requirements and big pharma.
advocate for yourself snd push for a MRI if you want to have one for peace of mind. That’s what I do. But I have a wonderful onco Dr and anytime I have pain or a concern, she orders scans.Blessings to you. Have a wonderful Christmas and I hoping you know how much we care about you. Everyone here tries to be supportive. Im not always able to reply as quickly as I would like to, but I do reply.
I don’t think you shared what stage and grade yoyr cancer is??
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I am not telling anyone what to do. Just sharing my experience….
In 2017, I was IDC breast cancer, left side, had category D density, grade 1. Stage 1. I only had surgery for treatment.I had been told it was standard treatment to do radiation and take hormone blockers too. I had not gone into menopause yet and didn’t want the drugs to throw me into menopause. So after talking with my husband and thinking about my decision i told them I’d have scans every 6 months as my treatment. My medical oncologist was ok with that. My surgeon said my cancer would probably return but after hearing what med oncologist said, changed her tune and said I’d probably be fine. (That made me just a tad bit upset).
I have had i think pet scan once with hip pain (all was ok) and a couple mri but all is ok
I continue to have mammo and ultrasound, one every 6 months. So far I am ok. I am 8 yrs post cancer….
This was my choice but I had to push back on the drs because this isnt standard of care for breast cancer.
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@jons_girl It sounds like you are very busy!
I’m glad your MO ordered a Signatera test for you. I’d be interested in hearing your results. For me it’s a very accurate test. Curious to see how it works for others.
Take care and have a great weekend!
Hugs, Pam 💗0 -
Yes I’ve been busy but just getting caught up on work and then I can veg for the holidays.
I am anxious to get my results. The medical asst told me that it takes like 2-4 wks to get the test results. I am hoping my insurance will pay for it.
I wonder if this is a yearly test I should be doing or how often I should retest. ?thank you for telling us all about that test. I had never heard about it.
Have a wonderful weekend!💐❤️hugs to you too.0 -
Glad you’re getting a break during the holidays! I was in education for over 30 years and there was always a big push to get everything done before the holidays. But then, the good part was, we got some time off. 🌲
FYI on the Signatera test: the first time you have the test it does take 2 to 3 weeks. After that, it usually takes 7 to 10 days for results. I don’t know how often your doctor might wish to do the test. I do mine every 6 to 8 weeks because I am metastatic and in active treatment right now. However, I am currently in remission and my last two Signatera tests have been negative!! 🤗 Your case is very different. Since you’re not metastatic, it may only be once a year. Good question to ask your MO.
Also, in my experience anyway, if insurance denies the claim from the Signatera test, Natera (the company that does the test) won’t charge you anything. I think the reason for that is they are trying to gather enough data to get insurance to make this a test that can be part of standard of care for women with our condition.Have a great weekend!
Hugs, Pam 💗0 -
Hi. New here. DCIS, ER and PR positive, nuclear grade 2 (intermediate) stage 0 non invasive, 5 mm and lumpectomy had 7 mm of clearance, post menopausal. Also had bilateral breast reduction from symmetry issue that the lumpectomy made worse, so 3 weeks post op on all that right now. I thought I did a pretty good investigation of everything and decided to forego radiation, and only take 3 years of baby tam (5 mg), but now second guessing everything. Any similar experiences out there? One oncologist recommended radiation and 20 mg 5 years, but my new onco says my decisions are within the guidelines, although creating higher risks.
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@sundee welcome to the BCO community. The club nobody wants to join, but a place to find answers and comfort.
Unfortunately, there is no one answer only for what to do in the world of BC. As you can see by my signature I was very low risk of a recurrence, but I had one anyway.
Knowing what I know now and looking at your details, I would probably make the same choices as you are making. My new philosophy is “less is more.” Tamoxifen has a 5-7 day half life, so it builds up pretty quickly. I was on 20 mg when I was first diagnosed 17 years ago. Side effects weren’t too bad then. Currently I am on 10mg and have quite a few side effects. Probably due to age and other medications.
Hope others join in this conversation and share more helpful information.
Wishing you the best.Hugs, Pam 💗
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@sundee
@livinglifenowGood morning sundee and Pam💐:
It’s been awhile since I’ve chatted on bco. Sundee I did was grade 1, stage 1 and mine was no node involvement but was considered invasive ductal cancer.
Pam what grade was your original cancer? It doesn’t state that in your signature.
I don’t know what my decision would have been had i been grade 2. I believe the grade of my cancer is probably what drove my decision the most. That told me how aggressive my cancer was. I don’t know if anything has changed since I had cancer in 2017, but back then you could be stage one and be closer to stage 0 or stage 2 depending on the number (i don’t remember how they determined the numbers which told you the stage. As I recall my grade 1 was in the middle so I wasn’t leaning towards stage 2.My surgeon was pushing for the radiation and hormone blocker drug. So that made my decision all the more challenging because I trusted her. But I got a medical oncologist at the time who spent about a hour with my husband and I. I had done quite a bit of research and I told him I don’t see any studies that show me that if I have radiation and I go on the hormones blocking drugs that somehow I will get cancer again or it will lower my risk dramatically at stage one grade one. He agreed with me that there was no data or very little data to go on. So he supported my decision.
My “treatment” was surgery (lumpectomy) and having scans every 6 months. No radiation. No hormone blocker drugs. So I have mammo then 6 months later screening ultrasound. I have also had MRI in the past, but I don’t like the contrast so I have decided not to do the MRI very often or at all. So far this protocol treatment has worked for me.
It’s very normal to second guess your decisions. I went through that too. I am almost 10 yrs cancer free and am on a bit of HRT now too. Im using bioidentical hormones not horse urine (Premarin).
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@jons_girl Thanks for chiming in on this thread. I was grade 2; no lymph node involvement; clear margins; IDC.
I am happy with the decisions I made 17 years ago. Since there is no way to test whether or not the hormone blockers are actually doing anything, nor is it possible to test whether or not the radiation is doing anything when there is nothing there in the imaging, (they are just giving whole chest radiation to one side—just in case), it makes me wonder if some of those treatments could actually be causing potential harm.I don’t know how much staging of tumors has changed since my original diagnosis in 2009. I do know that the Oncotype DX test regarding those with numbers in the middle group has changed since 2009. My score was 19 back then. Very low end of the middle. If I had had a score of 18, they would’ve said no chemo. Because it was 19 my doctor suggested getting chemo. I chose not to. After more clinical trials over the next 10 years, they determined that with a score of 19 and my age and everything, etc., at that time, someone with a score of 19 would do more harm than good by having chemo. So, I made the right decision. But, at the time, who would’ve known? Not even my doctors.
@sundee I guess the most important thing is to decide what you feel is the best course of action for you. You can always adjust and change that course if need be. Best of luck!
Hugs, Pam 💗0
