My Update—6 years post diagnosis
Hi Friends:
I thought I’d post a update on myself 6 1/2 years after my stage 1, grade 1 Invasive Ductal Carcinoma diagnosis. I chose to only have surgery. I did not go on hormone blocking drugs. I chose not to have radiation. I’m doing very well!
What was my treatment plan post cancer? I try to eat as plant based as I can. I stay active. Try to distress as much as possible and treasure each day of life.
I continue to be followed by my medical oncologist (even tho I’m not on any meds). My screening breast ultrasounds, mammogram, and periodic MRI are done every 6 months. I may start going to yearly screenings.
I'm being followed by a naturopathic doctor as well for my bioidentical hormone treatment. This was started awhile ago (about 3 months ago). This doctor cleared my hormone treatment plan through my medical oncologist. I currently use low dose bioidentical estrodiol patch and oral bioidentical progesterone. I had also been on bioidentical dhea but have stopped taking that. Bioidentical testosterone will probably be added in the future. We are still working on getting my hormone levels to where they should be. But this has helped me. Progesterone really helps with sleep. It’s wonderful! I’m feeling almost back to my pre menopausal self!
I just wanted to share that I am doing very well. For those of you here who have supported me in the past…thank you for your support! I’m so thankful for this forum. I will continue to hang out at this forum as I have time. I’m blessed to also support women in my local area coordinating mobile mammography clinics.
I’d love to hear how those of you from 2017 bc dx are doing.
Merry Christmas. Sending hugs to you all! Blessings.
Comments
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If you were dx around 2017-2018 please let me know how your doing. I’d love to hear from you all!
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Dear @jons_girl, thank you so much for sharing your positive update with us. It's truly inspiring! And we are pleased to hear that our forums have been helpful and supportive for you.
Sending our best wishes for continued good health to you!
The Mods
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Hi there! I think I remember you from years back. So glad you are doing well! I am too. I mostly read here now and try not to complain too much about mundane stuff. My last mammo was clear, I am now on annual screening. I did skip an MRI this past year and have not gone back to the SO (surgical oncologist). Guess I released myself.
I still see the MO every 6 months. I told him I put my stats in the CTS5 calculator tool and came up with 12.4% which is high risk of late reoccurrence, so I am continuing the anastrozole. Plan is to stop at 7 years. I have a DEXA scan next month, if my bones aren't holding up, that could change my mind. Or, if insurance isn't going to approve any more Prolia shots, then what's the use? I also just got denied having a low dose lung CT screening this year. I have multiple nodules, but they are small and stable. I sometime get pulling and some pain in both breasts unless I constantly wear a bra.
Was nice to hear from you. I am doing well, other than the insurance company running my life and having a little pain now and then if I go braless for too long. 😛
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So happy to hear your story, I also had stage 1 and had lumpectomy only, it is very encouraging to hear you are still clear after 6 1/2 years. You always wonder if you've made the right choice. I also alternate every six months with mammogram and ultrasound. I try to eat as healthy as possible but do need to up my exercise regimen! My oncotype score was 7.
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Hi Joey01!
I am SOOOO sorry that I have not replied until now! =( Sounds like you have the same dx maybe as I had. I am not sure what my oncoscore was because my surgeon said it wouldn't be anything to worry about (she had been practicing for a long time so knew this). I am glad my post encouraged you. Sounds like your treatment is the same as mine with the scans every 6 mo. I am thinking about changing that now to yearly. But I am not sure I am going to do that.
I eat quite healthy too. I need to exercise more regularly. But I do alot of work on our farm during the good weather months so I do stay somewhat active. I need to start running or walking tho!
I hope your recovery continues to go well! Have a wonderful weekend!
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Thank you moderators for your comments. I appreciate your support.
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I was diagnosed in 2018 and am thrilled to report that I just finished my course of Tamoxifen and feel like I'm really "done" now. Like so many of us, I don't go on here much any more, but I'm so grateful for this site.
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Hi Jonsgirl and All. I originally became a member in early 2006 but had to go off the Letrozole after almost 10 yrs so around 2017 became much more active here. ( had tomoxifin first shortly) . At that time "conversed" some with Jonsgirl bc was also having trouble getting my oncologist to order ultrasounds and MRI alternating. I considered going back to have a BMX bc back in late 2005 I had just gotten remarried and moved so I went w the lumpectomy. I had so much anxiety going off the Letrozole but eventually did it and some more genetic testing and just keep hoping I'll be okay. I lost my husband two yrs ago so there is a lot more stress now. Now and past four years my rt lumpectomy idk from age or what is extremely noticeably smaller than my left which was always the larger one. So trying to get used to wearing those prosthesis you get from Dept stores , but never had to do that before. Anyway, glad to see all of you in here and best of luck. My oncologist wants me to go back to primary after next month check but then I get r sore won't receive additional surveillance . Only since my husband passed has she let me do MRI alternating. Any suggestions? Sending hope and hugs to all!
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32b:
Im so glad to hear all is going well for you! Thank you for posting your update!
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Good morning momboy1020!
Thank you for posting your update! Im so sorry for your loss of your husband two years ago😢♥️
I would still be doing mamm/ultrasound yearly. Will they not let you do that? Ask primary if your med onco won’t follow you anymore.
I think it’s important for us to advocate for ourselves. We had cancer……and should be surveiled our whole lives♥️We are here for support. Sending a hug to you.
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Jonsgirl , thank you. Yes I think you're right it's best to still have the double test alternating. I'll talk to my MO and primary care after I go thru next testing which is MRI. Thank you all.
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That is wonderful! Just advocate for yourself. And remember if the MO doesn't agree with you…..you have the right to go somewhere else to a new MO. My MO is still following me. And I had NO treatment other than surgery. So finding a good MO is so important if they are not hearing you…..there are many other MO's. Blessings!
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Never get complacent! In 2017 I was diagnosed with a small 1-2 cm cancerous lesion in my right breast. I did not have estrogen therapy (I tried it but couldn't sleep at all), and no radiation. Very low onco type score. A series of three lumpectomies left my breast half the size it was. In 2018 I had a prophylactic double mastectomy. Also stage 1, nothing in lymph nodes. This July 2025, a new lump was just found in/just under my skin. Had my first PET scan which showed it only in my breast. Had two surgeries to remove lump and three sentinel nodes, which also came back positive for same cancer. Went for a second opinion and they had me get another type of PET scan called FES (for estrogen positive cancers) which found cancer in ALL my axillary lymph nodes. If my original oncologist ordered this test sooner, I may have found the cancer earlier. Waiting to have surgery to remove them all. Will need treatment after that, not sure what yet. Worst case scenario, chemo and radiation. I switched to the new oncologist. So depressed!
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Sorry to hear what you're going through but glad you got a second opinion and are ready to act on it.
I was diagnosed with Stage IA (1.3cm, grade 2, negative nodes) Luminal A (ER+/PR+/HER2-) IDC and had my lumpectomy exactly 10 years ago, at age 64. Low (16) OncotypeDX, no mutations. Got 16 sessions of high-dose radiation targeted to the tumor bed, then 6-1/3 years of Letrozole. So far, so good—though I did get two subsequent unrelated cancers (4.5 mm ocular melanoma, dx'ed and irradiated 2020, still stable at 3.4mm; and 2mm squamous cell carcinoma in situ on arm, wide-excision July 2024).
Letrozole gave me high LDL, so had to go on a statin—which then raised my a1c to prediabetic levels; it also caused weight gain (180 at dx up to 211, got down to 145 via medially-supervised low-carb diet ordered by my oncologist, but went back up to 183 due to life stressors).
Jan. 2024 was put on Zepbound, 2.5 start dose; hit goal (140, then 135) that Sept. Titrated up to 5mg in early Feb. when cravings returned, and temporarily got down to 132 when endocrinologist ordered me to stop losing; just titrated up again to 7.5mg due to cravings returning, but still maintaining at 135. (Usual maintenance dose is 10mg, but I'm a super-responder). R breast is 1.5-2 cup sizes smaller than L, but bras do seem to hide the difference so I'm not resorting to prosthesis or getting a L reduction. I tried that CTS5 calculator and at 74, my risk is still low.
Recently diagnosed with atherosclerosis (routine screening coronary calcium CT score was 1200, which ia 3x the "high" CVD threshhold of 400), so had stress test & echo—both of which I aced; but have accepted that cardiovascular events are always lurking in the shadows at my age, especially with a miserable family cardiac history. Had to raise my statin (Crestor) to 20mg. and add a baby aspirin…which in turn made my iron deficiency anemia permanent due to a likely occult small-intestine slow bleed. I now must keep a lid on chronic GERD and take iron pills, which keep my anemia in the "mild" range.
My takeaways—it's possible to go on with life without thinking about breast cancer most days; but it's also a fact of life that as we age, we can't "fix" something without "breaking" something else—ad nauseam, ad infinitum. We need to assemble & keep current with our team—and decide which problems, if any, have priority in treating.
But it sure beats the alternative,
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Thanks for your thoughts. Sorry you’re going thru all this. Oh my goodness, you do have a lot going on. Not to add more, but have you ever checked your B12? I was misdiagnosed with Gerd for 10 years before I found out I had autoimmune atrophic gastritis. I am unable to absorb B12 through my stomach and need weekly B12 injections, which I give myself. This also caused anemia, which so far, seems permanent, so I take iron with vitamin c every day. Yes, I agree sometimes the “cure” has its own set of challenges. I also have atherosclerosis, with a strong family history of strokes and heart attacks, and am on a low dose statin. So far, no side effects. My blood pressure has been trending higher for the last year, so I’m guessing blood pressure meds are next. Right now just trying to get through this latest cancer diagnosis.
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Crossh:
A couple things I wanted to say related to your posts…….my doctor who put me on hormone therapy told me if you have a uterus….you MUST go on progestrone (the sleep aid). In fact, my new primary told me that she tells her pts to take progestrone while they are sitting on the bed because it really does act so fast. LOL. It has really helped me sleep. Magnesium is a blessing too…really helps people relax and sleep. ( Glysinate form of magnesium won't make you have to use the restroom)
Another thing I wanted to share related to iron….. I too do not absorb iron well. I get iron infusions….. my MO does those as well! It is possible your MO may do that. My MO is a hemo/onco doctor. So maybe not all MO's do this. But thought I would mention this to you. Iron infusions have seemingly helped my iron level to stay good. My dad who has microscopic colitis also gets iron infusions and his levels are now starting to stay good too. Once your level goes down you have another infusion….
Please know we are here for support. Let us know how you are doing ….we care about you.
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Chisandy:
You are going through alot…..chat anytime! Hope today is a good day for you.
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jons_girl thanks for the info about the hormones. Just one more thing my oncologist did not mention. She is a hematologist and actually discovered the B12 issue, but said the iron pills are keeping me ferritin high enough, (70 last test) so no infusions are necessary.
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One more thing I want to share with you…..my hemo/onco doctor stated that there is relatively new info now that keeping iron levels above 100 is important. So anytime I am below 100 she orders another infusion. Maybe there is a study you could take to your onco to show them to advocate for infusion….just a thought.
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Well this is the same doctor that didn’t order any scans in 8 years, and I’m done with her. So I’ll ask the new oncologist/hematologist. Thanks for the info.
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