tubular carcinoma
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kani....please bring these posts with you for your appointment. You might wish to tape record his answers so you can listen again later on to the answers.
Interestingly, in retrospect, my MO had given me lots more info than most patients would receive. He was extremely technical in describing various risks and benefits. Looking back, as well as forward, I always refer to him as a fear monger. He's always saying to me, " If you were my wife, if there was as little as a 1% risk, I would want you to NOT take that risk." I think to myself, "How romantic." 😱
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hi kaneli. I understand where you are coming from. You and i were diagnosed at almost the same time and, like you, i am trying to get my head round the stats and the whole new language. Tubular cancer is so rare that a lot of the health professionals really don't seem to know very much about it and, i assume, follow a fairly standard protocol in relation to all er+ bc. Did you log in to livemath breast cancer and put in your personal stats? It confirms what i was told about the 1% risk, which seems to be over a period of 15 years although it seems to be the risk of death rather than recurrence.. I think it is fairly robust. The difficulty with prognostic calculators is that they are ' broad brush ' i.e., i can't put in other factors which would influence prognosis, such as the lack of lv invasion.
. I am on a one month break from a.i. to see if my symptoms improve. If i decide not to go back on it and i do get a recurrence, i will not blame anyone for giving me bad advice, which may be what makes a lot of doctors err on the side of caution.One thing my surgeon did say was that i have about a 20% chance of dying over the next 15years from some other cause. I found that curiously reassuring, though goodness knows why! Mind you, at the minute the on
Only thing i anticipate dying from is sheer fear!
Voracious reader, you are a great comfort! You seem to be very knowledgeable. Like you, my onc b surgeon told me if i was his wife he'd want me to take the a.i. even for a 1%risk. I had a warm feeling for about 3 seconds. Then i realised that is very different from saying he would take them if he were me. I note what you say about the stats for the various risks. Given that the tc prognosis is so good, it seems a bit self indulgent to seek ever more reassurance and if i had a less favourable diagnosis and looked at these posts i would feel resentful and envious. However, i find myself obsessing about stats and my failure to pin down reasonably accurate ones. As you know, I've been told that the risk of dm is negligible and the risk of local recurrence 1%. Are there any stats on the increased risk of a new primary in the same or contralateral breast?
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grain.....your last question is a great one. Recently, there have been two great occurrences which speak to your question. At last week's ASCO meeting, a study concluded for high risk of recurrence patients, 10 years of an AI improved a patient's risk of a local and/or distant recurrence BUT, so far, hadn't improved survival. There has been a ripple of studies that are showing for most high risk of recurrence, endocrine therapy has benefitted, with small risk. That said, nailing down precisely who is at most high risk has been hard to nail down. I guess it is about the gritty details.
Another area that is encouraging is the use of genetic testing in trying to determine EXACTLY who would most benefit from endocrine therapy. In addition to OncotypeDX, there is now Mammoprint and the BCI tests that are attempting to narrow down the risks and benefits. Interestingly, I recently had the BCI test and it said I would derive only 1% benefit from continuing endocrine therapy. I told my MO that that figure was pretty close to the lifemath score measuring 15 years! Didn't need to spend money on a genetic testt!😉
However, getting back to the initial ASCO study with regard to the AI's, the study proved that when it came to a new breast cancer in the opposite breast, the endocrine therapy was effective for most patients.....
My MO told me it was my call if I wanted to continue endocrine therapy. I haven't made a decision yet.
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I am glad that I found this thread.
I was diagnosed with Invasive Tubular Carcinoma as a second primary breast cancer. My Invasive Tubular Carcinoma was discovered in my pathology report so it was a surprise to me. I am very lucky that my ITC was discovered as this lump was previously biopsied years ago and found to be benign. It was biopsied again at the time of my bc dx and it was found to be benign again. I insisted that this lump was removed along with my "malignant" lump at the time of my bc surgery. The area of Invasive Tubular Carcinoma was 4mm and grade 1.
I had the double lumpectomy, whole breast radiation to my left breast (both tumors were in my left breast), an oophorectomy (after taking Zoladex to suppress my ovaries), and I am taking Arimidex/Anastrazole. (I had to be medically induced into menopause so that I could take AI's for the PILC.)
I have NO SIDE EFFECTS from Arimidex/Anastrazole.
My MO told me that had I only been dx with Invasive Tubular Carcinoma and not with PILC/PLCIS, that the lumpectomy would have been the only treatment that I would have needed for Invasive Tubular Carcinoma. She would not have recommended radiation or hormonal therapy.
For me, this is a moot point. However, for those of you who are figuring out your tx plans, please consider what my MO told me. You may not need to take hormonal therapy or to have rads. The decision is very personal and you must do what is right for you. I am not a doctor. You must feel comfortable with your tx plan. Good luck.
As to the person who is confused about the DCIS/Tubular DX - I would ask your MO and BS many questions. You can also ask your pathologist questions. I joined a bc support group and that is very helpful too. Good luck.
As far as when will you stop worrying? I don't have an answer for you. I am constantly doing breast self-exams and I always "feel" lumps (that aren't really there). Everyone is different. I hope that your anxiety abates quickly. Good luck.
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cimgraph: I'm wondering if you have finished your radiation and how it went for you? It's great to have it over and put it behind you. I hope you didn't find it too tiring.
614, welcome. I found your post very interesting. What is an M.O.? I am posting from ireland. I have a G.P., that is a general practitioner who is a doctor I can see anytime, a breastcancer surgeon and an radiological oncologist. I don't have anyone to advise generally in relation to, say, nutrition. I feel very well looked after but i don't feel my constant questions are particularily welcome. To some extent, I understand why, as a lot of them are very stupid! I have no background in science and a poor grasp of statistics. I think I'm asking something straightforward with a simple yes or no or percentage answer and then the answer i get reveals i simply haven't grasped the relevant issues. I have to absorb that later and then I think of something else and so it goes on. I've always been used to accessing information from books or the internet but that doesn't seem to work for bc.
i hope everyone else is ok. We have an expression over here "keep her lit" which means keep going, keep trying, keep hopeful. So ladies, #keepherlit.
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MO....is a Medical Oncologist. That type of doctor follows the adjuvant care, such as chemo and/endocrine therapy.
Regarding rads, usually, older patients can forgo radiation. Younger patients are offered radiation. That said, my sister's best friend had partial breast radiation for tubular breast cancer and had a recurrence in the breast. She subsequently had a mastectomy with reconstruction and is doing well. She is 3 years out from her second diagnosis and is doing well.
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Dear Grainne: I can certainly understand your worry and frustration. Breast cancer is terrifying. It doesn't matter what type of bc, stage, or grade that someone is diagnosed with. Yes, more advanced breast cancer is much worse, however, all bc is scary and anxiety provoking. You need to feel that your doctor listens to your concerns and that your doctor has the knowledge and experience to answer your questions. You don't want to feel rushed in your doctors office.
MO: Medical Oncologist. My MO is the person who oversees my care. I will be seeing my MO for years. I love and trust my MO. I am so lucky that I am her patient. She is the BEST! I just found out on Monday, that some people go to their BS: Breast Surgeon for this service and not their MO. I see my RO: Radiologic Oncologist too because he is the doctor who meets with me after my mammograms, sonograms, and/or breast MRI's. I absolutely LOVE him too. He is wonderful. The problem that I have is that I was treated in Texas (M.D. Anderson Cancer Center) and I live in Florida, so it is hard for me to travel/take time off of work/cover the expenses to see my RO.
It seems as if the doctors who you will be seeing on a regular basis will be your BS and your RO. Your GP is similar to the Primary Care Doctor in the US. Your GP is a wonderful doctor, however, s/he may not know much about breast cancer, since that is not his/her specialty. You absolutely must see a doctor who knows about breast cancer. That is crucial. Do not settle for someone who does not know about breast cancer.
Please keep asking your doctors questions. NONE of your questions are stupid. Please don't feel that way. Rephrase your questions and as them again if you are not satisfied with the answers that you are getting. If you think of new questions, then ask those too. This is a great website for information. Do not Google. Googling is not always helpful as there is much mis-information out there. A good idea is to join a support group for breast cancer. I have learned so much from my support group and from this website.
A good book is Dr. Susan Love's Breast Book. I don't remember the exact name but it is something like what I just typed. She gives great information.
One of the posts alluded to the fact that someone told the person she should not worry because she was "only" dx with tubular carcinoma. That is such a ridiculous comment. Tubular Carcinoma IS invasive cancer and it is extremely frightening. The tx definitely involves surgery (either lx or mx) and possibly rads and hormonal therapy. I know someone personally who had a double mastectomy due to her Invasive Tubular Carcinoma.
I hope that I answered all of your questions. If not, ask me more. I will answer what I know. Good luck.
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Grannie "Are there any stats on the increased risk of a new primary in the same or contralateral breast?
That is the exact question my husband asked about my other side and was told 1 in 8 women get BC. Just because it was found one side does not mean it will be found on the other.
A question to ask your Doctor when they are talking about stats is does that include all types of breast cancer or are they talking just about Tubular? The 20% chance we were told that is including all forms of BC. Which there are many papers on treatments for breast cancer that show by having radiation can improve ones chances by 20%.
We also talked about the 1% chance of protection with adding hormones after radiation but the risk factor for adding hormones are than higher than 1%.
I think there are so many different factors that influence our bodies reaction to treatment or non treatment that there is no clear path for all of us to take with tubular. I am just glad not to be alone and learning from what others have been saying about their experiences.
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hi, brightsocks. I think the answer your husband got was, at best, lazy. I've been doing some more research. I do google but i try to read only robust studies and academic aticles. Despite my profound ignorance of all matters scientific, there is usually an abstract and always a conclusion which i can follow. There seems to be a general acceptance of a new primary in the contralateral breast at a rate of .5% in each year. It is less likely, though i have no idea by how much, if you were
Older at diagnosis
had a less aggressive tumour on first diagnosis
Were er+ on fd
are not overweight
had no lobular features on fd.
i do not know if the same applies to a new primary in the same breast or if that percentage is reduced if, say, you had radiotherapy. i would be very interested to hear anyone else's views.
it occurs to me that it is ludicrous that we are trying to pick our way through the stats ourselves. Is there no single source that will tell you in broad terms:
The risk of recurrence
the risk of a new primary in either breast,
the risk of dm
the risk of death?
614, thank you for your encouragement. I note what you say regarding asking questions several times. The difficulty is that i am a lawyer. I am good at asking the same question in several different ways to try and get the answer i want to hear. i have found myself trying that with the medics and had to stop myself, in case i manage to talk someone in to giving me a more favourable answer than is warrented.
Hope everyone is having a good day.
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by the way, is anyone trying a daily low dose aspirin and/or excercise?
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There is a new study out looking into fitness and breast cancer.
https://myhealth.alberta.ca/Alberta/Pages/the-ambe...
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Dear Grainne: In your post, you mention factors that mitigate recurrence. I guess that I may be at a greater risk for recurrence because in addition to my invasive tubular carcinoma, I was also diagnosed with pleomorphic invasive lobular carcinoma and bifocal pleomorphic lobular carcinoma in situ before I hit menopause.
Both tubular and lobular carcinomas are very rare and not researched as well as other, more common types of bc, such as invasive ductal carcinoma. The subtype of lobular called "pleomorphic" is even more rare.
Luckily, my MO is well versed in all areas of bc so I feel very reassured by her. She does not treat her patients in a "cookie cutter" fashion.
I hope that your questions are being answered to your satisfaction and I wish you the best of luck.
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hi, 614. The factors i mentioned were related to the chance of getting a new primary in the contralateral breast. I think maybe I'm getting a bit stat blinded! I hope you are feeling well and confident about the future. Thanks for your advice.
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Here is another study I found.
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Dear Grainne and Brightsocks.
Thanks.
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I am new to this website and was curious if any of you could provide me with some insight regarding your diagnosis. I had a core needle biopsy on 3/16/16 in which several passes of tissue were collected. My area showed clearly on mammogram, but not as clear on Ultrasound, so the mammogram was used to guide my biopsy. It was identified I had an 8mm area. It had VERY long spiculations. I was told my biopsy results would take 3-5 days, but mine would be run STAT b/c she knew it was cancer, so I could expect the results in 2-3 days. On day 6, there was still no word so I called. I was told mine were needing extra stains. The next day they did call me back and confirmed it was breast cancer. I was told my cells were so close to normal cells and so slow growing, it took extra staining and a second opinion to confirm it was cancer. My pathology report was ER+ 90%, PR+ 42%, Her2 -, Ki-67 3%. Bloom Richardson Grades: Architectural Score 1 of 3, Mitotic Score 1 of 3, Nuclear Score 1 of 3. For a total score of 3/9, low grade. No carcinoma in situ identified. Additional wording was "The morphology and immunophenotype are compatible with a tubular carcinoma." Upon meeting with my surgeon to review my report, all she said regarding the tubular part was I had IDC with tubular features. My BRCA tests were negative and my ONCOtype DX is 14. My pathology report was done by a different hospital than my pathology report after surgery. There were two opinions and then the head pathologist at the the hospital of surgery also reviewed the report. After surgery, a staff pathologist prepared my report and it was not reviewed by another pathologist b/c it was in line with the original report. I had no idea until I recently started researching, that Tubular Carcinoma is actually a subtype of IDC. I called my nurse navigator Friday and asked if the they could provide me with my actual % of Tubular cells. She told me that an architectural score of a 1 means greater than 75% were tubular. When I explained I wanted the exact number, she acted like I was crazy and I already had all the lowest scores and best case scenario possible. When I guided her to the verbiage on my original report, she agreed it was worth emailing the lead pathologist at the hospital and having him take a look at it. I am assumming if it was 90%, that would have been indicated??? But even if it was not, with all of my other scores so low, I want to know where that fell between 76-100% tubular. Do all of you think this makes sense to know? From everything I have read, the closer to 90% I am , the better. Any insights of your opinions and your personal diagnosis is appreciated! Thank You!!!
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I can also add, I had a lumpectomy with clear margins. 3 nodes were removed, all were negative. I am currently in the process of receiving 16 rounds of radiation and am scheduled to take Tamoxifen for 10 years.
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hi, katherinenicole. Sorry you are here but welcome. I think you are right to want every last piece of information you can get. Tubular is the least aggressive type of b.c. and your stats sound very reassuring. I have been browsing some pathology websites and it seems to be clear that pure tubular and tumour size of less than 1% is the best possible result. I have seen stats of 100% survival. I had an area of 1.3 dcis with 3 or 4 small areas of pure tubular within it and i was very glad when people on this website were able to confirm that the dcis element didn't compromise the pure tubular prognosis. I am amazed how much of a grasp you have of your diagnosis already. You don't say how you feel, and maybe you don't want to , but i am only now beginning to feel as if it is possible to move on. I was very healthy and well and a bc diagnosis after a routine mammogram just knocked me sideways. My treatment is the same as yours but i am a bit further down the road. I have no science background and over here in ireland we don't seem to get nearly as much info about the pathology as you do. Because tubular is so rare, this thread is sometimes quiet. Try posting on the stage 1 idc thread. There are some really wellinformed people about. Good luck to you. If i can help in any way I'd be glad to.
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Dear KatharineNicole:
I am sorry that you were diagnosed with BC but I am glad that you found this website. I would ask your MO many questions and keep asking until you are satisfied with the answers. Go for a second opinion if necessary. Bring someone with you to your appointments. Good luck. (I cannot answer your question except to agree with what Grainne said.)
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in hHi Katherine Nicole,
I've had a similar situation with my treatment center. My surgeon was the only one of the team to really discuss what Tubular Carcinoma is, and what the prognosis is. He talked me out of opting for a bilateral prophylatic mastectomy based on the pathology report and I am grateful he did. But, I'm not seeing him anymore and the radiology oncologist is less open to discussing the path reports. She did say my score had been downgraded since the negative sentinal node pathology came back but I don't see how that can be since that has nothing to do with the excisional biopsy report, right? The grades were 1 2 1 so the only downgrade that could occur would be with the nuclear grade and I don't understand how the doctor could determine that after the initial report. I am also curious, since the architectural grade is 1, how much of the tumor is "tubular." I realize it must be over 75% but I also would like to know exactly how much out of curiosity and for future treatment choices, such as whether to continue on with Exemestane for 10 years or stay with for only 5. It's important, and I do think we should have access to this information without being made to feel guilty. I'm going to ask for printed reports this week when I go in for radiation appointments. Let us know how you make out in getting your "numbers:))"0 -
Dear BirdsandTrees: Do you have a Medical Oncologist? You need to find a MO if you do not have one. Please ask your MO all of these questions. Your MO will be able to go over your pathology report with you. Good luck.0 -
could you update on your treatment? I had a 1.3 cm tubal cancer removed. Had clear margins and noinvolvement of lymph nodes. Not sure how I'd do with radiation. I'd like to hear how you did
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hi and welcome. I had dcis of 1.3cm with 3 or 4 small areas within it of pure tubular cancer, no lvi, no lymph nodes and clear margins. For me, radiation was absolutely grand, a nuisance more than anything else. I had no side effects at all and continued working. I was told it reduced the chance of recurrence for 4 or 5% to 1% and i thought that was worth doing. I definitely don't regret it. I took an a.i. for 10 weeks but found the side effects intolerable. I've now been on tamoxifen for 3 weeks and so far so good. I was diagnosed at the beginning of feb at a routine mammogram and the diagnosis just knocked me for six. I am finally beginning to feel like myself again and as if i really can walk away from this. I'll be glad to tell you anything i can.
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I had a 4mm invasive tubular carcinoma along with pleomorphic ivasive lobular carcinoma and bifocal pleomorphic lobular carcinoma in situ. I had a double lumpectomy and whole breast radiation to my left breast. I am taking Arimidex/Anastrazole. Good luck to you.
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Hi GinsengSlide,
I had pure tubular and 16 radiation treatments. I found the radiation stressful but that was only the fear of the unknown. I kept on working and doing sports which kept my distracted. That is all that was required for my case. I was not given hormones for the odds of the side effects for me were greater than the benefits.
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I was diagnosed with Tubular last September. I elected to have a double mastectomy which may have seemed drastic but I had strong family history, I was being called back every year with areas of concern and I was sick of it. 1.2cms with nodes all clear so no follow up treatment
Results cane back as Estrogen receptive hence now on Tamoxifen. Prognosis was "as good as it gets".
Standard dose Tamoxifen 20mg made me feel tired, nauseous and achey:- ( I weigh 118lbs). I am now taking 10mg and can tolerate it but MO not happy about it.
Given my choice of a double Mastectomy I am questioning why I am taking Tamoxifen at all. My chances of a recurrence have to be slim given I have no breast tissue and Tamoxifen is not without other risks.
Is anyone else in my situation and are they taking Tamoxifen in these circumstances?
Incidentally I have been gene tested for BRCA1 BRCA2 and all 61 known cancer genes and all came back negative which was somewhat unexpected given mother sister and I all diagnosed around age 50.
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Dear Wke: Go for a second opinion with another MO. It may ease your mind. Good luck.
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i agree with 614. Also, go to cancermaths breast cancer tools and put in your details. It gives you the risk of death over 15 years. Yours will be very low. Did you ask you current m.o. for any stats?
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wke, we just wanted to say thank you for joining and posting! We're sorry you're having difficulties, but you'll find our community very supportive and helpful.
Please let us know what you and your doctor decide. We hope you're feeling better soon!
--The Mods
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Tamoxifen reduces your chance of distant mets and a new (er+ ) primary in either breast, as well as a recurrence. As you have had a double mastectomy i think your risk must be v v small. I should add that my bs told me the chance of distant mets with tubular bc is almost negligible and all the articles and surveys seem to confirm this. I think my biggest risk is a primary in the other ( unradiated ) breast. What risk exactly does your m.o. want tamoxifen to reduce and what will that reduction be?
i was told it is v unlikely for tubular bc to be genetic. It is very difficult to get clear and reliable stats for all these separate risks.
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