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tubular carcinoma

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  • 614
    614 Member Posts: 398

    Dear Brightsocks:

    I only saw my breast surgeon for the surgery and for the post op visit. My medical oncologist is the doctor whom I see on a regular basis. However, I had my surgery in Texas and I live in Florida so I had to see a different doctor. I LOVE my M.O. and I am so thankful that I was lucky enough to become her patient. Thank G-d! My M.O. is the "guru" of BC in Florida, where I live. I had to be very persistent to be able to have an appt. with her. (I am proud of myself.)

    I am glad that you only have one more meeting with your surgeon. You will be under competent care from your family doctor. Good luck. I am glad that your scar is fading and is less noticeable.

    I did not even know that it was an option to have your tattoo spots removed. Who does that? Good luck. I hope that you will get the call to have the tattoo's removed. Be persistent so that you can have this procedure.

    I am happy for you.

  • Brightsocks
    Brightsocks Member Posts: 126

    The tats will be removed with a laser and it will take more than one visits from what I understand. I think a few ladies on this community have had experience with this process. I have seen there are places across North America that due this as a free service. If anyone has had this done I would be interested to what it was like.

  • 614
    614 Member Posts: 398

    Free tattoo removal is awesome. I hope that people inform you about the procedure and how to get accepted so that you can have this done. Good luck.

  • Brightsocks
    Brightsocks Member Posts: 126

    614- My meeting went well today with my surgeon I thought this was the last time we will meet but she likes to follow people for 2 years every 6 months. So I am fine with that I enjoy our little talks. I have always had a pain under my right arm in my armpit which she explained it to be breast tissue. I could never pin point the exact spot thinking it must come from on source she explained it could be a larger section of breast tissue. I have had this check over and over from all member of my medical team.

  • 614
    614 Member Posts: 398

    Dear Brightsocks: I think that it is great that she will be following you for 2 years. That is reassuring. I am glad that she told you that you have breast tissue under your arm. That takes away your worry. Good luck.

  • Brightsocks
    Brightsocks Member Posts: 126

    Just thought I would check in. Today I am going for my first treatment to have my 3 marking dots removed. The treatment for removal takes seconds and several attempts.

  • Brightsocks
    Brightsocks Member Posts: 126

    Just an update.

    Nothing much is happening to the spots. They are a bit red with no colour change. Everything about my BC comes down to counting numbers for me from the start/end of treatment days, to the clicks of the radiation treatment and now the zaps of the removal of the tattoo marks. I never have been so into counting in all my life thank goodness for learning to count to 100 in Kindergarden :)

  • Brightsocks
    Brightsocks Member Posts: 126

    Went for my second blast to remove my spots. Dr came in and asked "did we freeze you last time?" No but you can if you would like! He then said no that would take too much time. Yikes! Too much "time" to manage my pain.... Thanks a ton. Well I went on and he blasted away instead of the 17 clicks from the machine he went to 40. He wants them gone as much as I don't want to return. So now I will just wait to see what will happen to them as they heal.


  • peppopat
    peppopat Member Posts: 5

    I must be the most unluckiest TC breast cancer patient on the planet. My TC migrated to one lymph node, as a micromet, even though they say that is extremely unlikely.

  • grainne
    grainne Member Posts: 119

    hi. I'm not very good at links but if you google pubmed and then search tubular breast cancer there is an article at no 18 about overdiagnosis by mammograms. Para 2.2 is very reassuring. It says 5% of tubular cases have axillary mets but even so, it will almost certainly not kill any of us unless we subsequently develop a more aggressive cancer. I'm very happy to read it myself because i had 2 tiny satellite tumours discovered on lumpectomy which I was very worried about but it seems there was a good chance they wouldn't have developed even if they had been left alone. I had whole breast rads and I'm now on tamoxifen for almost a year. I'm happy i had the optimum treatment for me. I see you had diagnosis of dcis recently : is this a recurrenceor a new cancer? How are you doing?

  • peppopat
    peppopat Member Posts: 5

    I spoke with my medical oncologist and asked him if this was a new primary or a recurrence. Since he's too cheap to order a DCIS" oncotype Dx, no doctor can tell me for sure. I spoke with three different doctors and all had a different opinion The way my MO is about ordering stuff, you'd think he had stock in Coventry !!!

  • India1
    India1 Member Posts: 4

    Hi, I am diagnosed with tubulo lobular carcinoma on July 6th 2017, Had a sugery and it was found 1.5 cm Cancer lump was removed with margin of 2 cm (20 mm) each side. Post surgery Histopathology report confirmed that cut margins are free of cancer. It shows ER/PR + and HER negative , Ki-67 is 20% which is good news. No carcinoma in any Lymph node.

    Oncologist suggests going for Radiation and Medicines. My question is that if Tubular carcinoma is not going to come back from what I found from Internet, it is completely removed from my body, Histopathology report says Intraductal carcinoma is not seen , do I need radiation? Please send me your reply to this board or to my email (rakeshsingh012345@gmail.com) . I appreciate for any suggestion regarding treatment. I don't want to take radiation or medicines. What are risks?

  • India1
    India1 Member Posts: 4

    Hi, I am diagnosed with tubulo lobular carcinoma on July 6th 2017, Had a sugery and it was found 1.5 cm Cancer lump was removed with margin of 2 cm (20 mm) each side. Post surgery Histopathology report confirmed that cut margins are free of cancer. It shows ER/PR + and HER negative , Ki-67 is 20% which is good news. No carcinoma in any Lymph node.

    Oncologist suggests going for Radiation and Medicines. My question is that if Tubular carcinoma is not going to come back from what I found from Internet, it is completely removed from my body, Histopathology report says Intraductal carcinoma is not seen , do I need radiation? Please send me your reply to this board or to my email (rakeshsingh012345@gmail.com) . I appreciate for any suggestion regarding treatment. I don't want to take radiation or medicines. What are risks?

  • India1
    India1 Member Posts: 4

    Hi, I am diagnosed with tubulo lobular carcinoma on July 6th 2017, Had a sugery and it was found 1.5 cm Cancer lump was removed with margin of 2 cm each side. Post surgery Histopathology report confirmed that cut margins are free of cancer. It shows ER/PR + and HER negative , Ki-67 is 20% which is good news. No carcinoma in any Lymph node.

    Oncologist suggests going for Radiation and Medicines. My question is that if Tubulor carcinoma is not going to come back from what I found from Internet, it is completely removed from my body, Histopathology report says Intraductal carcinoma is not seen , do I need radiation? Please send me your reply to this board. I appreciate for any suggestion regarding treatment. I don't want to take radiation or medicines. What are risks?

  • 614
    614 Member Posts: 398

    Dear India:

    This reply is probably too late, but I would go for a second opinion. (In fact, I went to 3 radiation oncologists.)

    Please be aware that you can only radiate an area once.

    Good luck.

    Sincerely,

    614

  • isee
    isee Member Posts: 77

    614...are you BRCA+ with Tubular? Just wondering. I am, and also had prophylactic ovary (and everything else) removal...just in case. Wish I didn't though. I have gained about 30lbs. over the past 5 years since the surgery and muscle tone in abdomen is non existent. I have high risk surveillance due to my BRCA2 status twice a year.

  • 614
    614 Member Posts: 398

    No, I am not BRCA positive. I had my ovaries removed to be medically induced into menopause in order to take anastrazole (aromatase inhibitor). I cannot take tamoxifen. I am gaining weight too. 😩Good luck

  • CAM8
    CAM8 Member Posts: 37

    Hi. I'm new to the site. Just diagnosed with Tubular Carcinoma. 5 mm. Seeing surgeon tomorrow. Probably looking at lumpectomy and radiation. So many questions! Thanks for all of the great posts!

  • isee
    isee Member Posts: 77

    Howdy CAM8 - Welcome. Yes, apparently we are the lucky ones! I just had my 7 year from diagnosis anniversary. I had a lumpectomy, actually 2 of them as they didn't get it all during the first surgery and then I had radiation. It all went very smoothly. Other than having to live away from home during treatment, as I am from a rural location, it was a breeze. I did find that I was tired for a long time after the radiation. I'm assuming that is what caused it, but who knows. I was told that I could choose not to have radiation given the excellent prognosis of Tubular Carcinoma...but as it is still considered an "invasive" cancer, I opted to be safe rather than possibly sorry at some point in the future, and had the rads. Best wishes with your surgery and treatment. Keep us posted. I'm BRCA2+ have you been checked for a mutation? Just wondering....

  • CAM8
    CAM8 Member Posts: 37

    Thank you for the response. Yes I'm so grateful this type of BC is very curable. Genetic testing has not been done yet. I am assuming they found nothing in your lymphnodes? Did you need any restructuring?

  • isee
    isee Member Posts: 77

    My surgery site was on the left side, on the side almost, so there was no nipple involvement. I think there must have been quite a bit of swelling for a very long time as both breasts seemed to be pretty much the same size. The last year or so I have noticed that the treated breast is about half the size of the other one. I guess I'm fortunate that I don't have large breasts anyway so it's not usually noticeable, except sometimes my shirts...if they are button up, seem to hang a bit off center. Nothing I can't deal with with a little periodic rearranging lol. No, I had no need for reconstruction. I should add that the first surgery I had was called a lumpectomy and the second, a partial mastectomy. If I had only one surgery, I bet you would not be able to tell the difference at all in shape and size. My lymph nodes were clear! :)

  • CAM8
    CAM8 Member Posts: 37

    Thank you for the info and congrats on your 7 year anniversary!!!

  • grainne
    grainne Member Posts: 119

    hi, CAM8 and welcome. How did you get on with the surgeon? My bc was a lot bigger than yours but still small at 1.3 cm, mixed dcis/tubular. Neither the surgery nor the radiation caused me any significant problems and my post lumpectomy breast still looks very normal. I have now been on tamoxifen for 18 months with minimal side effects and no weight gain. This thread has been fairly quiet lately because tubular bc is so rare but someone will always respond when you post. The diagnosis, no matter how favourable, is a complete bodyblow and just knocked me for six. This is a good place to come for empathy and reassurance as well as information. Keep posting and let us know how things are going.

  • CAM8
    CAM8 Member Posts: 37

    Thank you for the support. Grateful it is Tubular Carcinoma (with DCIS) but still a little bit of a shocker. It was small (5 mm) and they say most was taken out with the biopsy. We are to schedule the surgery in the next two weeks. Going to get some genetic testing which they recommend for someone my age (49). She is recommending radiation treatment and not sure yet about hormone treatment. That will be discussed when all pathology comes back. The surgeon was so reassuring and took her time with me to explain every detail. Thanks again for your support and I will definitely keep posting!!!

  • CAM8
    CAM8 Member Posts: 37

    Hi! Surgery is set for this Monday. Was diagnosed with Tubular Carcinoma. Grateful it is curable and treatable. Any suggestions for after surgery? Ice? Tylenol? Thanks!

  • isee
    isee Member Posts: 77

    Howdy Cam8,

    Glad you don't have to wait too long for your surgery. I don't remember having too much pain after surgery...I did have "cording" in my arm from underarm to elbow. I gather this was like a swollen lymph channel. It was like having a piece of rope in my arm. It went away after a month or so I believe. My advice would be just to take it easy and rest for a bit after your surgery. Best wishes...I hope it is fast and uneventful. May your nodes be clear :)

    I have a mammogram booked for Monday...I get checked twice a year cause of the mutation...alternating ultrasound with mammogram. Should have been an MRI but I am allergic to the gadolinium...so no more MRIs for me unfortunately :(

  • CAM8
    CAM8 Member Posts: 37

    Thank you! I heard the worst part are the injections in the nipple before surgery. Not looking forward to that!

  • grainne
    grainne Member Posts: 119

    it's great to have the surgery so soon. I had very little post surgery pain..I think I took over the counter painkillers the next day. I was driving in 3 days and back at work in a week. The worst pain was the sentinel node scar nipping a bit but that didn't amount to much either. The nipple injection wasn't pleasant but it was surprisingly quick. The doctor kept me talking ( I'm always ready to talk) and it was done before I knew it. I wouldn't waste energy worrying about it.

    You are lucky to know it's tubular and that your prognosis is excellent before surgery. All I knew was that it was dcis/idc and I had to wait for the pathology results a week after surgery in a state of crushing anxiety that I dread ever having to repeat. The surgeon was practically glowing when he told me it was tubular.

    Isee good luck with your mammogram on Monday. I have an annual one and the second is booked for Feb 6th. Getting nervous already! You are over 6 years out: do you still worry?

  • isee
    isee Member Posts: 77

    Hi Grainne and Cam8,

    Oh man yes, I forgot about that nipple injection...don't know how I could. I swore like a trooper...I think if I had known what was going to happen I would have handled it better. At least you know to brace yourself Cam8. It does hurt, I have to say :(. Hopefully you will find it not to bad...fingers crossed for you. I don't know why they don't freeze the area first?
    Yes Grainne, I still worry. I'm very likely to have another breast, or other type of cancer due to the BRCA2 mutation. Although, I had a complete hysterectomy and ovary removal as a preventative measure, so that certainly limits the possible locations that a cancer could pop up. I have no ovaries, tubes, cervix, uterus....as well my gallbladder was removed about 15 years ago. I think my biggest fears are lung or bone. My mother, who also had the mutation, had several cancers...skin, breast, cervical, and died of lung cancer at 84 years....just this past November.

  • grainne
    grainne Member Posts: 119

    Isee I am so sorry about your mother. That is a great loss and I know the first Christmas is always hard. I will be thinking about you on monday: please post at let us know all went well and you can relax for a while.

    I note with relief you swore like a trooper. I have a wide and varied vocabulary of profanity and have found many occasions to use it.

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