tubular carcinoma
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Pretty quiet in here...Hope everyone is doing well.
My latest mammogram and MRI were all good...phew!
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Hello isee!
Thought I'd do one of my periodic checks, and so glad to hear your imaging was good!! Just had my mammo and all is well here too!!
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Great news benaya! Here's to continued health!!!
Hope everyone else is doing well too!
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Hi, all. Haven't posted here for ages Just looking in to say I had a mammogram last night and it was clear. That's 6 1/2 years since diagnosis. I feel so lucky. I had a bit of a scare a few months ago when they found a very large uterine polyp, but it was benign. Talking to my surgeon last night, it is clear he just doesn't expect it to come back. I know he may or may not be right but i think I will just embrace that thought and get on living my life. I hope everyone else here is doing well.
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That's so goo to hear! Yes a uterine polyp would've scared me especially since had taking tamoxifen.
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Hi everyone and grainne...WOW fabulous news grainne! So glad your results were good!
Tublular Carcinoma is apparently not likely to spread...one thing good about our rare type! Here's to many, many more years for you and all of us!
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I'll drink to that, Isee!!!
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Hope everyone is doing well. I just got results from my yearly breast MRI...all good. Mammogram on Friday, I'm going to assume it will be good as well.
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That's great news, Isee...so glad to hear it!
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That’s great to hear Isee! I had my first MRI/ mammo since finishing treatment. All good. I recently quit aromatase inhibitors after trying all three. Anyone else decide not to take them since tubular has better prognosis
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Hi, gardengurl. That is good news; it is always reassuring to get the first MRI/mammo over.
I couldn't take the AIs either. I had terrible hot flushes leading to disturbed sleep, joint pain and (worst of all and for the first time) depression. I started on tamoxifen instead and had almost no side effects. I was on it for 6 years and would happily have continued but for the discovery of a benign uterine polyp, probably caused by tamoxifen.
Tubular is low risk but not no risk and I decided to give tamoxifen a go, knowing I could stop any time it got too difficult. I'm glad I did. I'm nearly 7 years out now and doing well'. The very best of luck to you.
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Hi Grannie, thank you for sharing your experience with tamoxifen. When I see onc again in January I’ll ask about it
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Hi gardengirl:
After doing exhaustive research on tubular, I decided on having a lumpectomy only & opted out of taking all drugs. Four years & doing fine!
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Hello everyone!
As I've posted previously, I opted to have a lumpectomy only and declined estrogen blocking drugs. My decision was based primarily on my research (articles I posted here). It was clear at the time of my diagnosis in 2017 that doctors (I saw about 7) weren't familiar with the tubular subtype and essentially treated it like other forms of more invasive cancer. I made copies of the research for the surgeon and oncologist--the last doctors I saw and although the oncologist still recommended HT, he didn't push it.
Yesterday, I decided to see if there was any more recent research, and found the attached article from 8/21, which essentially says that tubular is usually treated the same as other forms of IDC, and that HT & RT have limited influence on prognosis. Would be good to share with doctor if newly diagnosed.
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I was just diagnosed with Grade 1 Stage 1 0.7cm Invasive Tubular Carcinoma with no spread to nodes. I see this thread was started over a decade ago. Are there any further developments on treatment protocols? Radiation? Hormone blockers? Has anyone decided against treatment beyond surgery and have had no recurrence? Any long term survivors still chiming in?
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Hello everyone, I hope you are doing fine. I have not connected for a long time , I have to admit I found the new website quite unattractive and user unfriendly. Plus, I spent some time trying to focus on other aspects of life.
I am 3 years on from diagnosis and just had my yearly mammogram, all clear. I am not aware of new research bsmiz. When I was diagnosed I decided to follow my doctors' advice and had surgery followed by femara. It is not fun but tolerable. I am now in osteopenia (all levels were fine before I started the anti-hormonal therapy). My oncologist was not overly concerned when he saw the results in January, and he just added calcium to my mix of supplements but I plan to discuss with a reumatologist in autumn.
Other than that, I find that, as time goes by, it is easier to put more energy into things other than cancer, but the aftermath of the whole "cancer experience" doesn't get particularly easier. I have some chronic issues caused by the surgery which I have to manage with regular physiotherapy. I also still carry with me some mild PTSD which makes me very negative towards medical exams, hospitals etc., and my resistance to stress had declined. I have had plenty of psychotherapy so I think this is here to stay and I'll have to learn and manage it as I do with other physical issues.
So, yes, life was easier before cancer, but I am glad it could be treated, I am very grateful to be alive and to be able to lead what I guess can be defined a normal, active life. I think I am better now at prioritising the most important things in life and I try to add more beauty, and pleasure, to my life, than I did before.
Here is to many more years of serenity and joy for all of us!
Take care dear ladies.
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tubular breast cancer is a low-grade. I have been diagnosed with that in 2010 and it came back in 2017. I had a second lumpectomy. No radiation, just the pills. It is now August 2023 and my calcium and alkaline phosphate levels are are creeping up and that’s never a good sign. Worried sick it has probably come back as metastasis in the bones but nothing I can do about it, if tubular cancer came back after 13 years, it is what it is.
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I'm in almost this exact same situation. Only difference is it was 8mm. What did you decide to do? It's driving me bonkers! I'm not at all keen on tamoxifen for numerous reasons. Thought I was up for the radiotherapy until they went through all the risks with me yesterday and I can't get over this feeling that it's using a bit of a sledgehammer to crack a nut... in one breath they tell me I'm so lucky it's so low risk and then they insist I need all this heavy treatment... would be really interested to know if you found anything that helped you make the decision. Hope you're doing ok
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@calico74 - Welcome to the Breastcancer.org community. Many here have been through similar situations, so we hope you get responses from other members soon. As @bsmiz hasn't been active on the boards since Sep 6, 2023, you might want to try sending her a private message. It's easy! Just click on her username to display her user card, and then click the Message button.
Good luck! We hope you find the guidance you need.
Sincerely,
The Mods
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Hi everyone. I know this is an old thread but I'm hoping some of you will see it as this is the only place so far I've been able to find any other tubular cancer people! How are things going for you all? It's great to read your thoughts so far. I would love to read updates. I'm at the start of my journey, diagnosed in October and had a lumpectomy and sentinel node biopsy. Just deciding on treatment plan now...
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Hi calico74, I was dx’d in 3/22 stage 1 grade 1 tubular BC. I was 62 at the time. Things are going well! I opted for lumpectomy and partial rads., followed by trying all 3 aromatase inhibitors. Even though I only had partial radiation, it caused my breast shape to change quit a bit. Unfortunately lots of side effects for me while on hormone therapy - hot flashes, insomnia, hair thinning and brain fog. Currently taking tamoxifen 20mg every other night., even though onc wants me to take every day. My breasts are still extremely dense. I had a bilateral Breast lift and right breast reduction in October. LCIS was found in my non cancer breast, so I’m trying to stick with the tamoxifen. I excersise at least 5 days a week. Good luck with you decision and love to hear about your treatment plan.
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Hi, all. I am almost exactly 8 years from diagnosis and had a lumpectomy, radiotherapy and, after a false start on AIs, 6 yers on tamoxifen. I had a mammogram last night, mercifully clear, and I have been told by my consultant that my risk of bc is now that of any woman of my age. He does not want to see me again (nor I him!!). I will always be vigilant but I genuinely feel that I can now leave this cancer behind. To anyone just coming to this thread: be hopeful and confident. I have found this website of huge benefit, particularly in the first year, when I was very fearful and really struggled mentally. Today, however, I'm feeling just great!!!
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That’s great to her grainne! I hope you continue to check in regularly. It gives the rest of us great comfort to know that you have completed your treatment, and are cancer free!
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Thank you for the article @benaya
I was recently diagnosed this month with TC and am deciding between treatment options.
I am considering that I do not want RT or HT and need to choose between the Lumpectomy or MX.
If anyone has any thoughts to add on this I would truly appreciate it.
ER/PR+ HER2-4/2024 Diagnosed 1A Tubular BC
3/2022 Total hysterectomy0 -
Hi ladies a newbie!! I was diagnosed with PTBC 12 months ago. But I am an anomaly as I had micrometastasis in lymph nodes.
Here's my diagnosis. 1.4cm PTBC with coexisting IG cribriform dcis, a 2mm tumour that was 1mm away from the original. Er and pr positive, her2 negative, ki67 8%, grade 1 stage 1b. Oncotype score 14.
I am 51 now and probably through menopause.
As a health anxiety sufferer I paid for a pet ct scan which showed my tumoir SUVmax 3.94 but no other significant uptake of FDG.
I had a mastectomy and nothing else apart from tamoxifen which I take religiously.
Just Had my annual mammogram and check with my consultant. Waiting for results- takes a week or more in UK. I guess it has relit my worries over PTBC becoming secondary. I know it's rare, read every research paper out there. But it happens and I feel more likely than most due to micrometastasis.
Anyway looking forward to chatting with anyone out there.
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Hi @leylushka, and welcome! It's great to see you here and we hope that some of our members can provide some advice and share their own experiences with you. Wishing you the best of luck with mammo results. We know the waiting is hard, but we hope you can keep busy these next few days to distract yourself. Please keep us posted!
The Mods
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Hey me again! Consultant happy and mammogram normal. Looking forward to chatting with anyone in my sitch xx
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