Topic: tubular carcinoma

Jun 7, 2016 01:02PM - edited Jun 7, 2016 01:03PM by grainne

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?

Jun 8, 2016 11:37AM 614 wrote:

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.

Jun 8, 2016 03:29PM voraciousreader wrote:

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.

Jun 9, 2016 10:15PM Brightsocks wrote:

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.

Jun 10, 2016 10:51AM grainne wrote:

by the way, is anyone trying a daily low dose aspirin and/or excercise?

Jun 14, 2016 09:40PM 614 wrote:

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.

Jun 16, 2016 09:36AM Brightsocks wrote:

Here is another study I found.

http://meetinglibrary.asco.org/content/154858-163

Jul 9, 2016 02:12PM Katharinenicole10 wrote:

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!!!

Jul 10, 2016 03:05AM grainne wrote:

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.

Jul 17, 2016 07:58AM Birdsandtrees wrote:

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:))"

Jul 25, 2016 02:26PM - edited Jul 25, 2016 02:38PM by GinsengSlide

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

Jul 25, 2016 03:58PM 614 wrote:

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.

Jul 28, 2016 09:01AM wke wrote:

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.

Jul 28, 2016 11:44AM grainne wrote:

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?

Jul 28, 2016 03:00PM grainne wrote:

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.