IDC and DCIS Tubular Breast Cancer

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Hello, I had DCIS and IDC tubular breast cancer stage1a and had a lumpectomy in Feb and finished 5 targeted radiation sessions in May. Sentinel lymph nodes were clear.

I was told tubular cancer is a rare type of cancer.

I'm interested in hearing from others who also have/had tubular cancer and their experience. Hope all are doing well. Best to you. 

  • Hi, I am sorry I don't have the experience myself to answer your question, but I noticed you've not had any responses yet as the site is quite busy,  This message will bump you back to the top of the group and hopefully someone with the right experience will be along soon.  Best wishes 

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  • Hi I don't have the same cancer as you but there is a page of ladies discussing your type and their experiences were very positive. I hope you find their page or one of them sees your questions. Also chat online or phone with the macmillan nurses they are brilliant at explaining everything to you. Good luck xx

  • I’ve just been diagnosed with stage 1 invasive Tubular cancer. I had a mammogram and then a biopsy. They have sent me for an MRI yesterday and now I am waiting for the results of this before they tell me what the next step is. My one lump is an inch long. I never felt it. There appears to be two other lumps next to it, hence the MRI. Can you tell me more about yours too. 

  • Hi, Sure. I’m sorry you have to go thru this. Pray

    I’m in the US, in Illinois. Diagnosed in Jan by mammogram, ultrasound and biopsy.Then had lumpectomy with sentinel lymph node biopsy - nodes were clear. Pathology report indicated Cancer was (ER +/PR +/ HER - )invasive distal carcinoma and distal carcinoma in situ - both tubular. 
    The Medical Oncologist recommended radiation and to take a hormone inhibitor for 5yrs.

    i met with Radiation Oncologist and he recommended 5 radiation sessions over a 2 week period. Radiation was targeted and not entire breast. Radiation started about 7-8 weeks after the lumpectomy.

    I’m on  the Aromatase Inhibitor (AI), Exemastane, to help lessen the risk of recurrence. My Med Oncologist told me the recurrence for tubular cancer is very low. 
    I didn’t have any symptoms with the breast cancer. I did however have uterine cancer (also tubular and low grade) diagnosed in Dec and full hysterectomy in early Feb. I had spotting and cramping as symptom that. 
    May I ask your age? I’m 58. 
    Also, I was stunned when I received the diagnosis. I took HRT - hormone replacement therapy for 2 1/2 yrs and wonder if that caused it. Did you take HRT by chance? 
    Hope this info is helpful. 

  • Hi, sorry you are in the club no one wants to join.  I was diagnosed with tubular cancer September 2022 following a mammogram, ultrasound,  needle test and biopsies.  I was told at my first appointment via the needle test I had breast cancer.  When I returned for the next appointment I was told the biopsies were negative.  Further biopsies confirmed tubular cancer.  I had three small tumours and then a further one was found.  Following my first surgery my margins weren’t clear.  There was DCIS is the margins do I had a second operation.  BCN told me to look at it as part of the process as it does quite often happen.  Tubular cancer  is rare and more difficult to diagnosis.  My surgeon told me it was the best one to get.  I then had two weeks of radiotherapy and am on Anastrozole for five years.  I wish you all the best for your treatment.  Just be patient and look after yourself.  You will get there but it was eighteen months before I felt more like myself.  I still feel tender around my right breast.  Hope this helps to reassure you xx

  • Hi

    Im 57 and have been on HRT for about 5 years. I did ask the nurse if it was related to taking HRT and she said no. But this form of cancer can feed off oestrogen, so I’m told to stop taking my HRT and I will only know more about my cancer when they look at the results of my MRI next week.  I was also stunned and its slowly sinking in. I still don’t believe it. You’ve had so much happen to you and you’re very brave. Thank you for sharing. I’ll let you what my results are on the next step. Heart 

  • Thank you so much Blush. You are so brave too. It’s amazing how we see how much inner strength we really have - the cancer diagnosis and journey seems to bring it out. 
    When I asked The radiation oncologist if HRT could have caused this cancer, he said it could have. I guess it depends who we ask. I was using the estrogen or estrogen patch and also taking Progesterone (because I had a uterus at the time). I was taking the HRT because menopause made my hormones drop and it affected me and caused a deep depression and so much anxiety. My hands were literally shaking and I had no appetite. And the day I am not hungry is a day that something is wrong as I love food! After 2 days of being in HRT, I was great. It literally was like a miracle. The gyne told me it would probably take 4 weeks to feel the effects - haha - it took 3 days for me.
    I’m sorry you are going thru all this. Hearing the ‘cancer’ word knocked me off my feet. I still am in some disbelief, but as time passes and the lumpectomy is done and radiation, it is more believable. But there are still days - many days - where Is at to myself, wait, did I really have cancer? 
    My Med Oncologist told me this is the ‘best’kind of cancer to get (if one gets cancer) because it is slow growing and has a great prognosis. It still boggles my Mind how I got this in 2 places that the drs say is not related. People say you won’t know what caused it, but I had genetic test and don’t have BRCA or other mutations and almost feel on a mission to find out what caused it or try to as it just feels so odd that I got this as I was not sick and there is not a lot of cancer in my family. My dad passed from lung cancer at 82, but he also smoked cigarettes for about 60 yrs and was a firefighter. And when he started as a fireman way back when, they didn’t wear masks. So that’s a lot of smoke and chemicals to take in.

    I’ll send you a friend request and if you ever need someone to talk to, want to k ow lore about my treatment or just want to chew the fat, please reach out. Your treatment plan will prob be similar to what I had since tubular is pretty much treated the same way from what I understand.  My Med Onc (in the US) told me they never give chemo for tubular. It’s not needed. Wishing you comfort and some peace as you go thru this journey. For me, it got better when there was a treatment plan in place. The whole waiting before surgery and waiting for pathology report was hard, but someone we get thru it. Peace Heart

  • Thank you so much for your reply Pray. Sorry to hear you had to go thru so much. My Med Onc told me too that tubular was the best one to get. I had the 5 sessions in 2 weeks of radiation. That seemed to knock me down as I was healing pretty well before the radiation. It’s been 4 mo since the lumpectomy and I’m still store. If I sleep on that side, ugh, it hurts the next day. I am totally with you and thank you for your support. Having cancer has totally made me better at taking care of myself. Did the radiation make your energy go down? Ever since the 3rd radiation, I exhaust so easily. I was so bummed because I was healing good. I also find that after radiation, I can’t be in the sun or heat long as I start to feel sick and weak. I’m glad you are feeling better and I so appreciate you sharing your journey. If it’s ok, would you mind indicating if you were on HRT before diagnosed with tubular? I was and am trying to see if that is a common link as this cancer is rare. Best to you. Dove️