Posted on: Aug 27, 2010 02:15PM
Anyone out there also diagnosed with tubular carcinoma? I know it is a rare kind, rarely spreads, is highly estrogen positive and has a good prognosis. If you have tubular carcinoma, I am wondering about your treatment. I had lumpectomy, radiation, and tamoxifen. I am curious to know if all of this treatment is necessary for this kind of breast cancer- tubular, stage 1, grade 1, 0 lymph nodes.
Thanks, I look forward to learning more about tubular carcinoma related to treatment plan.
Posts 91 - 120 (398 total)
Feb 29, 2016 01:59PM BookWoman wrote:
Yes, it was tubular carcinoma and my nodes were clear. I had radiation and am now on letrozole.
Mar 8, 2016 04:30PM - edited Mar 8, 2016 05:00PM by Kaneli
Just an update on my Tubular carcinoma. I am scheduled for a lumpectomy on Tuesday Mar 22nd. If my margins are clear, and there's no node involvement, I will go for the APBI (accelerated partial breast irradiation) that will be a course of treatment for 5 days, 2x a day. I will begin that the following Monday. The one I will have is called Contura. They will insert a balloon into the tumor cavity with multi catheters which will be like a port in my breast for those 5 days. I will go twice a day to the hospital where they will insert a radioactive pellet, or "seed" into the catheters which go into the balloon.The balloon is supposed to conform to the tumor cavity. The seeds stay in the balloon for a few minutes, until desired dose is reached, then withdrawn. It is an internal radiation that treats the local area of the tumor, from the inside, up to 1 cm into the borders. You have to be a "candidate" for this type of radiation, i.e, small, slow growing non-aggressive tumor, without expectation of node involvement. Also, over 60, I believe. These are characteristics of early stage Tubular Carcinoma. If there is node involvement, or other surprises after surgery, well, the plan will change, but hopefully this will go according to plan. After that, I believe I will have to do hormone therapy, probably an AI. I will cross that bridge when I get there. There's only so much a mind can absorb at once, so while I am thinking of the Hormone therapy and whether I want to do that, I need to get through this part first. I still have concerns about if this the right treatment for me, but when I think of the alternative of 6 weeks of WBI, I still feel that this is a better option for me. Has anybody else had experience with the type of radiation I'll be having?
Mar 9, 2016 12:08PM BookWoman wrote:
I have not had that type of radiation. You might get more answers from the radiation forum--not too many people come to this one. Good luck with treatment--hope all goes as expected!
Mar 9, 2016 05:19PM Kaneli wrote:
I noticed that, Bookwoman....Not a lot of action on the Tubular BC forum! There's not a whole lot on the radiation site either. A rare cancer with a type of radiation appropriate for a small subset of the BC population. :)
Apr 28, 2016 12:03AM cimgraph wrote:
hi all, I'm 3 weeks passed my lumpectomy of left breast with sentinel node biopsy. Tiny tumor found on routine mammogram in March about 6 weeks ago. I too feel it was all a blur! Diagnostic mammogram with ultrasound guided biopsy reported as early stage invasive ductal carsinoma, estrogen & progesterone receptors strong positive (95%) Her2 negative. I am 70 years old. My doctor says "young 70", whatever that is! Still working part time. I took a leave of absence for outpatient lumpectomy plus SNB. Surgery went well, Pathology report after surgery id's tumor as invasive tubular carsinoma Grade 1. My surgeon assures me it was very small .5 cm tumor and very slow growing. Clear margins and 2 nodes removed were clear. Good prognosis. Hurray!
Met with oncologist and gave me an option to take anti hormone therapy or not. So said no thank you after reading some side effects. Next, met with Radiation oncologist who explained I could be a candidate for radiotherapy for left breast in prone position to prevent interference with heart and lung. When I asked whether I really needed this therapy considering clear margins and node negative and small tubular tumor, she seemed surprised I asked and thought there was a need for it since I did not choose to do anti hormone therapy. Needed to think it over. That was yesterday. I've been doing my research today, and found this forum which has been a Godsend!
Wish I did not have to make this decision. Just don't want to overtreat this. But I'm thinking I can handle radio therapy better now rather than risk a recurrence in 4,5,or 6 years when I am older, even if there is a low risk. She is thinking the 3 week radio therapy treatment plus one. How did some of you manage radiation therapy and work?
Apr 28, 2016 01:02AM isee wrote:
I could have easily worked through the radiation treatments...all 16 of them. I didn't because I live in a rural area and had to travel and stay in another town for my treatment, away from my job. I did feel a bit tired at times, but I could have easily worked. I'm a middle school teacher.
Apr 28, 2016 10:35AM cimgraph wrote:
isee, thank you. That's what I needed to hear. Many, many years ago (24) I had surgery, chemo and radiation therapy for rectal cancer. I endured 6 weeks of radiation treatments in conjunction with chemotherapy. It was not fun. I had gone back to school at the time, and found I was too weak toward the last few weeks to do it all and had to withdraw from classes. I had a great outcome and my doctors called it a "cure". I only have that experience to draw from, but I was much younger then.
I had given my boss a heads up before my leave of absence for surgery that I may have treatments following the lumpectomy. But I plan to continue to work through them. I do have to travel to a hospital 40 minutes away for the daily treatments, but it is the only one nearby that can accommodate the prone position radio therapy. I am still not sure I am a candidate for that yet. I will do what I need to do. My youngest son is getting married next summer and I plan to dance at his wedding!
I still have some soreness under the arm from the sentinel node incision and under the breast from the tumor removal. Still can't wear a normal bra with comfort; wearing soft sports bras. Still taking Tylenol and Advil for the discomfort, but staying active. Going back to work tomorrow. All things considered, I feel blessed for such a great outcome. Thank you all for your support and I'll post more later.
Apr 28, 2016 11:23AM BookWoman wrote:
I worked through radiation treatments. I am a school library media specialist. I was able to go to treatments in the am and then come to work about an hour or hour and a half late. I did get tired by the end of the day, but I made it through. I was 62 at the time.
May 2, 2016 10:43AM cimgraph wrote:
Thank you, BookWoman, for sharing your experience with radiation therapy. I put in a call to my radiation oncologist this morning to set up my mapping appointment. I have gone back to work and a coworker came and talked to me about her experience with breast cancer. She also worked while doing 6 weeks of treatments and I will be taking only 3 weeks plus one. She is younger than me, but I'm determined! My company seems more than willing to work with me and are very supportive. I'm lucky. I'm so glad I found this forum! Thank y'all for being so honest and forthright.
May 9, 2016 02:48PM Kaneli wrote:
Dear Cimgraph, I have not read the Tubular BC forum in awhile. It seems so rare that I rarely even check it anymore! I had my lumpectomy March 23rd, and began brachytherapy that following week, It was an accelerated 5 day 2x per day internal radiation regimen, I will tell you that it was an uncomfortable week, but I had a SAVI "whisk" type of contraption implanted into my breast cavity with 7 catheters extending out, like a port with a bunch of tubes extending from it. By virtue of that, I would have found it difficult to work, not to mention having to go in for treatment twice a day. But I talked to another woman undergoing the same treatment, who was working part time that week. After the device was out, it was much better, and I bounced back pretty quickly.Good luck to you on that.
My Cancer was similar to yours. Tumor was Tubular, meaning slow growing, not likely to metastasize, .6 cm, clear margins, negative sentinel node. I too, am trying to decide whether to do the hormone therapy. I'm 61, and I have a prescription for Armidex, which I have not started yet. I am going to wait until I come back from my vacation to give it a try. I have read about so many side effects, that it makes me not even want to try it, and even though my MO says it will cut my chances for recurrence in half (he said 10% vs. 5%), but at what price? Achy joints, bone thinning, weight gain, dryness everywhere, hot flashes, hair loss, depression and the list goes on and on. I swear, it seems every possible unpleasant possible side effect is listed....so I don't know. My MO said he recommends taking it, but would not fault me if I decided not to. I will be back from Italy June 4th and then I'll decide.
Then again, Pontiac Peggy suffers from no SEs!
Anyway, good luck to you. It's such a blur, for sure!
May 10, 2016 12:28PM BookWoman wrote:
Kaneli, As you said, some people don't have any side effects. Some people have mild or very few and some have awful SEs. I am one who has fairly mild--a little stiffness when I get up after sitting for a while or in the am, but after I move around a bit it pretty much goes away. I sometimes have one or maybe two hot flashes a day, definitely something I can live with. You can give it a try and see how it effects you--if it is too bad you can always quit.
May 10, 2016 03:57PM Brightsocks wrote:
I also had pure tubular and was not give any hormones for the side effects and the odds were less than 1% chance. The side effect then played a role in the choice to take them or not. I did have radiation and lumpectomy and will be followed by my health care team. Tubular breast cancer is a rare form of cancer in which less than 1% of women have this form. I am glad to know there are others out there with similar cases.
May 16, 2016 10:06PM cimgraph wrote:
II decided to go for the radiation therapy after going over my research and talking with my radiation oncologist. I went for my mapping appointment and it seems like the prone position will work for my treatments. I am scheduled for a "dry run" May 20 th with my first of 16 treatments beginning on May 23rd. We will see how it goes. Thanks to all for sharing your experiences.
Jun 4, 2016 06:34PM grainne wrote:
hi. This is my first post. My diagnosis following the biopsy was dcis/infiltrating duct. Following a lumpectomy, the diagnosis was tubular, grade 1, no lv involvement, lymph nodes clear, er+, pr+,her2-., 1.3mm. Everything i have read says pure tubular has the best prognosis and under1 cm is nearly always curable. Thie tubular is mixed with the dcis. Does anyone know if the dcis means that i have mixed tubular or does it not count? I can't find any info on this. I am struggling with a.i. and tempted to give up
Jun 4, 2016 09:36PM cimgraph wrote:
Welcome. I had surgery for IDC invasive ductal carcinoma April 6, lumpectomy with sentinel node biopsy. 2 nodes removed; both neg. I am 71 years old. The pathology after surgery specified IDC: tubular. I'm sure each person's treatment is customized to their personal needs. Do your research. I found the 5 year antihormone therapy with radiation treatments appears to be standard procedure. The oncologist said I could do the 5 year treatment, but would not fault me for declining, so I decided against. The radiation oncologist was adamant I do a 3 week- 16 treatment course to prevent recurrence in the same breast. I am half way through my radiation and I'm tolerating it ok.
If you feel unsure, always get another opinion, then you can make your decision. Good luck and prayers.
Jun 5, 2016 05:03AM grainne wrote:
thank you so much for that rapid response. It is fantastic to think there is someone halfway round the world listening. I too had 15 daily sessions of radiation and 3 boosts for 1 narrow margin. I was able to continue working throughout, apart from a week off for the lumpectomy. I felt i was coping well and could simply move on but then the a.i. just knocked me for six. Seriously unpleasent and frequent night sweats, really bad stiffness and pains in my knees and, worst of all, depression. After 10 weeks i went back to my surgeon and explained, thinking he would say that the recurrence rate was so low i didn't need to bother with them. He didn't. He said that although the rate is so low, someone has to get it and why not give yourself the best possible chance? Of course i agree with that: when i went for my mammogram only 1 person in 100 received a diagnosis and that one was me! However, the thought of 5 years like this is deeply depressing and i am trying to get my head round the stats to try to make an informed decision myself. I would very much like to know if the dcis mixed with the tubular means it is not pure tubular? It sounds as if this was dcis which became invasive and subtle changes may not have been picked up on my last mammogram.
he did say the chances of distant metastasis are negligible but i know a.i. would significantly reduce the risk of a new primary in the contralateral breast.
I'm sorry this is such a screed but it is a relief to put it in writing. All you other women seem to be american and have more information about your pathology than i do.
One last question: does auyone have any idea when this will stop being the first thing i think about in the morning, my constant companion during the day and the last thing i think about at night (if i had any proper nights (! ) ?
kind regards to all of you, especially those of us still absolutely astonished to find we have cancer!
Jun 5, 2016 04:00PM voraciousreader wrote:
Pure tubular means the invasive part of the tumor is consistent with being mostly tubular. Had the invasive part included traditional breast cancer cells along with tubular invasive cells the it would have been classified as mixed tubular or another way of saying it is that it would have been traditional breast cancer mixed with some tubular.
Regarding thinking about it, it takes time to "forget." Everyone is different and you are quite early on the journey. You have great prognostics and should do very, very well!
Jun 6, 2016 01:50PM - edited Jun 7, 2016 06:59AM by Kaneli
Jun 6, 2016 02:57PM grainne wrote:
hi, kaneli. That information is different to that given above and i am finding it very difficult to establish accurately what i have got. The diagnosis i was given was simply " tubular" and the surgeon explained that it had been dcis in which areas of tubular had started to develope. As the initial biopsy has indicated dcis/infiltrating duct i assume it was at least 50% dcis. May i ask the source of your information? I was hoping the dcis didn't count as an 'other type' of breast cancer. I was told my risk of recurrence is 1% after radiotherapy, further reduced by 40% if i can stay on a.i. Your recurrence risk is higher, which i dont understand as your pathology is more favourable than mine: your tumour is smaller and the tubular nature complete, although i was told grade 1, rather than 1a, if that has any significance. i hate being so confused and bewildered. This is like being in a strange country where you don't speak the language and can't read the signposts. Does anyone know if the yale research presented over the last few days on the very significant effects of excercise on recurrence relates only to overweight women or to everyone? I would gladly trade a daily a.i. for a brisk walk!
kind regards to you and very good luck with the a.i.
Jun 6, 2016 03:14PM BlueHeron wrote:
one thing to consider -- if you are not tolerating AIs, you can try tamoxifen. Mechanism of action is different and side effects different. I'm tolerating fine so far. I'm post menopausal but with osteopenia so MO decided tamoxifen even tho very small difference in efficacy.
Jun 6, 2016 06:14PM - edited Jun 7, 2016 07:00AM by Kaneli
Jun 6, 2016 06:43PM voraciousreader wrote:
kan....DCIS which is NON invasive, does not affect the invasive part of the diagnosis. Simply put, DCIS may be present, but it is the nature of the invasive component of the tumor that determines whether the tumors is pure or mixed. Ninety percent of the INVASIVE tumor needs to be labeled "tubular" or in my case "mucinous" in order to be labeled as such. If more than 10% of the INVASIVE TUBULAR OR MUCINOUS BREAST CANCER CONTAINS traditional ductal or lobular invasive cells, then it is referred to as "mixed tubular" or "mixed mucinous." I think you are confused because 10% of your tumor had a portion that was non invasive DCIS.
Jun 6, 2016 06:47PM voraciousreader wrote:
grain....1a describes the size of your tumor which puts you at Stage 1. Aggressiveness is described by grades 1, 2 or 3 with 1 being the least aggressive. Simply put, you have a very small, minimally aggressive, invasive tumor.
Jun 6, 2016 06:48PM voraciousreader wrote:
kan..DCIS IS NOT INVASSIVE.
Jun 6, 2016 06:53PM voraciousreader wrote:
kan....I am sorry because I'm very rushed and can't speak to the inaccuracies in your comments. That said, you are very confused with respect to all of the statistics and logic regarding invasive and non invasive cancer.
Jun 6, 2016 08:45PM Kaneli wrote:
Vor, As I said, I am open to comments/ enlightenment on my logic. I am trying to figure it all out as well.