tubular carcinoma
Comments
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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!
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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.
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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?
Any thoughts?
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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.
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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.
Blessings.
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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.
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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.
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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!
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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.
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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.
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Ihad a second opinion who said with Invasive Tubular and no lymph involvement there was no need for radiation or tamoxofin.. they push that stuff heavily here on the East Coast .
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Hello all.
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.
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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
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Grainne
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.
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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!
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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!
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thank you for that, i appreciate it.
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❤
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Dear Grainne, I too, had Tubular Carcinoma. Mine was considered pure, and I believe that it's considered "Pure Tubular" if the DCIS cells make up 10% or less, and 90% or more is Tubular. I had BrachyTherapy for my radiation treatment, which was 5 days of accelerated doses of Rads rads 2x per day. I finished the rads April 1st. My MO recommended the Aromatose inhibitor Anastrozole, which I just began yesterday. Tubular Cancer is so rare that it's difficult to find a lot of info about it. I've read some posts of people who said their MO told them that Hormone Therapy was not necessary for Tubular, and others who said that their MO said they should take it. My MO recommended that I take it, and said it would reduce my risk of recurrence from about 11%, to half, making it 5.5% chance of recurrence. Who really knows? My MO and my BS both agreed that it was worth a try. My BS was not as lenient and felt that I should take it no matter what. My MO said that I should try the AI, but if the SEs were too extreme, he would understand and support a decision to not take it. So I'm trying it. I am nervous about the SEs but I may not even have any. One day at a time
As far as thinking about it first thing in the morning, I don't really do that every day anymore. I was DXed Feb 10, had lumpectomy Mar 23rd and finished rads April 1st. I was thinking about it all the time during that period. I am thinking about it more often again, because I have just started the AI, but I think once I'm used to the fact, those thoughts will settle down. I will say that I'm not freaked out anymore, and I don't feel that it is defining me anymore. We can be thankful that this type of cancer has such a good prognosis. Hang in there....it will get better as you become more accustomed to this new reality. You got this! 0 -
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.
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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.
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Dear Grainne, My diagnosis of "Tubular Carcinoma with 10% DCIS in situ" came from my pathology report after my biopsy, and was confirmed after my lumpectomy. I really don't exactly know what the "DCIS in Situ" means, except that it consists of cancer cells which are invasive, but not Tubular but have not spread beyond the site of the tumor.....I think! I know what you mean about the varying recommendations and different approaches of the various doctors, BSs and MOs. I keep trying to read more and come up with a definitive approach for this type of cancer; there are so many differing opinions. As far as the 1% chance of recurrence, I think we have to take into account that the general female population has a 1 in 7 or 1 in 8 chance of BC. Not exactly sure of the stat, but it's something like that. So I am thinking that the 1% chance of recurrence that they talk about with Tubular, means there's a 1% increase of chance of recurrence over the general women's population of roughly 12% to 14%, which would be 1 in 7 or 1 in 8. Does that make sense? When I was first reading those stats about the 1%, I thought, well, that's pretty good....but it must be on top of the general risk of breast cancer that we all have. Otherwise, we would be really thrilled to have this Tubular BC and have the treatment and rads, and now be down to a 1% chance of recurrence. We still have the other 12%-14% chance of having some type of BC. The hormone therapy can guard against those BCs that are ER positive (80%) so I think the Hormone Therapy, which starves the ER+ cancer cells, and kills them before they can grow into a problem is what decreases the overall risk of having BC again. So, in my case, theoretically, my chance to get BC again would be reduced to maybe 5%-6%....If anyone has a different take on this, please let me know....this is just what I have discerned from my reading and from my discussions with my doctors.
As far as exercise, I think they are saying that exercise is good for anyone, and that is not limited to overweight people. Again, it just makes sense to me, but I have not read anything that specifically says that. I know that they recommend weight bearing exercises for bone health, which might be a concern when you decide about Hormone Therapy.
Blue Heron, I am also post menopausal, but I had a tiny blood clot years ago after I had some complicated knee surgery which kept me hospitalized and immobilized for a long while. My MO decided not to risk even the slightest possibility of a DVT so he opted to give me Anastrozole. I would prefer Tamoxifen, but I guess he is being, understandably, very cautious.
Hang in there!
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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.
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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.
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kan..DCIS IS NOT INVASSIVE.
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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.
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Vor, As I said, I am open to comments/ enlightenment on my logic. I am trying to figure it all out as well.
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kan...I don't understand where your MO came up with the 11% chance of recurrence number. Did you have the OncotypeDX genetic test done? The reason why I ask is because grain's 1% number seems more accurate based on SEER data. SEER is a database that follows many patient records. That said those recurrence numbers specifically refer to DISTANT recurrences, that is metastasis to other body organs. Those figures cannot be comingled with figures that speak to the general female population's risk of getting a breast cancer. There are many different risks for different samples of women. One risk is for women who have never had breast cancer.Another is the risk of a local or distant recurrence for a female who already had a breast cancer diagnosis.And the last category, a breast cancer survivor's risk of getting a new breast cancer in the same or other breast. All of these categories present their own risks.
I hope what I explained makes sense to you.
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Vor, I have no idea where he came up with that figure. He said that my risk for recurrence was 11%-12% and would be reduced to half if I took AIs. Those numbers seemed strange to me too, I had no Onco test. I really thought that those numbers would be smaller, given my small tumor, no node involvement, clear margins and it being Tubular. I will talk to him soon and try to pin him down on how he arrived at those stats for me. Thanks for setting me straight! I will delete my speculative post so as not to steer others in the wrong direction!
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Here is an interesting paper on Tubular Breast cancer.
Tubular Carcinoma of the Breast: Further Evidence to
Support Its Excellent Prognosis
Emad A. Rakha, Andrew H.S. Lee, Andrew J. Evans, Sindhu Menon, Nancy Y. Assad, Zsolt Hodi, Douglas Macmillan, Roger W. Blamey, and Ian O. Ellis
VOLUME 28 NUMBER 1 JANUARY 1 2010
JOURNAL OF CLINICAL ONCOLOGY
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