Topic: tubular carcinoma

Aug 28, 2010 09:38PM tamgam wrote:

aner18- I was diagnosed with tubular carcinoma in Jan. 2010.  I have only met maybe 2 or three other women with same tyoe.  I had been undergoing biopsies and tests for 2 yrs finding LCIS and atypical hyperplasia so when I got my diagnosis I had had enough.  The markers all indicated a risk for bilateral invasive cancer so even though the tubular cancer was not very large I chose bilateral mastecomies with Lat flap recon. Radiation just scared me more than the bmx.  I was just 40 at dx with small children so my decisions were made with them in mind.  It may seem extreme to some but I have NEVER regretted my decisions.  I feel pretty comfortable  and actually think I look great in clothes.  It is an emotional journey for us all but I feel as if one can never do enough because once you get the cancer dx even with bmx we are never really free of worrying about this beast!

Best of luck to you in your tx.

Sep 3, 2010 05:09PM hopefor30 wrote:

I was diagnosed with pure tubular about three years ago when I was 47 years old.   It was very small -- only 3mm -- and was found after I had an excisional biopsy for DCIS.    I had a mastectomy with DIEP reconstrution due to the amount of DCIS.   I did not have radiation or chemo.    I was then put on tamoxifen which I am still on, but I will be switching soon to an AI.

After just over 2 years on tamoxifen, I developed a thickened endometrium and an enlarged uterus.   I recently had total hysterctomy and bilateral ooph. 

I had done a lot of research and everything points to pure tubular being a more favorable prognosis.   Let's hope so.   I can't say I felt that positive when first diagnosed since i initially thought I had DCIS only.   

Did you have the Oncotype DX test?   I did and my score, although in the low range, was a 16.   I was expecting it to be lower since pure tubular is favorable, but I have seen other women without tubular who have lower scores.   Who knows?    I am now three years post diagnosis and doing well besides the fact that I also had thyroid cancer last year.

I personally feel safer doing the standard hormonal therapy and my onc has never suggested that I skip it.    He does tell me, however, that tubular is low risk, not no risk, but low for recurrence.   I hope he is right.

Sep 21, 2010 11:19PM JRae wrote:

I too have been diagnosed with tubular cancer (2 mm).   Currently waiting for test results for Oncotype.  Depending on oncotype score, tamoxifen is being discussed.   Hopefully the results will come in this week.

Sep 22, 2010 07:19PM janey47 wrote:

I had tubular carcinoma and had lumpectomy & radiation.  I declined tamoxifen.  I had a discussion with my medical oncologist about it and told her that I preferred not to take it and asked her about the chances of ovarian cancer if I take tamoxifen vs the chances of recurrence of breast cancer if I did not take it.  Turns out the chances are just about equal, maybe a slightly higher chance of ovarian cancer on tamoxifen.  So I said no thanks, I'm comfortable with the risk level, especially considering quality of life issues related to side effects from tamoxifen.

But yeah, when my breast surgeon called with the news that it was tubular carcinoma, she was practically jumping up and down, she was so happy.  :-)

Nov 27, 2010 10:55AM Cocococo wrote:

Hello All,

I had TC T1, NO, MO - 6mm removed via wide local excision. Sentinel node biopsy clear of cancer. Histopathology report stated tubular with tiny spec of DCIS [less than 5% of 6mm]. I am a statistics person through and through. I notice a lot of women don't appear to be and my treating specialists keep telling me I am unusual in this regard. Anyway - my strong recommendation is you ask your specialists for the print out of your stats with/without radiation, with/without adjuvant therapy etc. Its the fastest method I have of not wasting my and the specialists time. Many of these nomograms and algorithms are available on the internet so I crunched all my histopayhology results in before my meetings with specialists so I already had a solid handle on my stats. Bottom line - for adjuvant therapy it could only benefit my survival by 30% of 1% ie., 0.33%. Am I going to have chemo and/or hormones for 0.33% boost to survival? no way especially considering the mortality and morbidity associated with adjuvant therapy was much, much higher. Radiation a little less dramatic - stats showed I had a 95% chance of no local recurrence without RT and with RT, it went up a measly 3% to 98%. So I declined RT as well. The main issue is RT is invariably a one shot deal and in case I had a relapse I did not want to waste my one shot at RT on this cancer. Finally, I recommend you get the ki67 score to check out the cell proliferation index - how fast or slow your cancer is growing, Mine was less than 1% [it runs from 1-100 with 100 being the highest] so it was as slow growing as is possible to measure. The ki67 index assisted my treatment decisions, as did my Oncologist who told me I had the most trivial cancer he had ever seen! And warned me the greatest danger posed to me was over treatment. So yes there are those of us out here who have taken the path of no treatment other than wide local excision, but of course you need to have a solid handle on the stats. 

Feb 21, 2011 11:48AM girlsmom3 wrote:

Hi Isee...TC IS an invasive caner ; categoraly. I also have ben diagnosd with TC/DCIS. I had a lumpectomy on Jan 7th but it strongly apprears they were in the wrong area of the breast. I have been for a 2nd opinion/mri and 2 more coreneedle biopsies last thursday, result should come tomorrow. They are trying to *find* it again. My treatment was/is to be 6 weeks 5x a week rad and tamox. I wss told that a lesion so small (7mm) doesn't at all warrant a mx. the answer of got ( a smart ass one if you ask me) is that the TC had to come from somewhere, meaning the dcis was also tubular nature.

my sentinal was also clear. it is not common for it to spread and it usually remains rather small.

my oncotype was 16 and chemo has never, ever been suggested 

Feb 21, 2011 12:35PM Hindsfeet wrote:

cococo...thankyou for your post! It is the voice of reason that I needed to hear. I can't submit to standard treatment of care when my tumor isn't standard. My tumor so far...1 centemeter...IDC, with mucinious and tubular features. They took two small biopsies January 5th. My surgey is March 8th. I am also having a hard time wrapping my head around this type of cancer. Aggressive or radical cancer treatment for a cancer that most likely isn't going to spread or kill me feels like overkill in light of conventional therapy side effects. 

Feb 21, 2011 07:01PM isee wrote:

This is an interesting study. It is a slight bit more current then the article referred to earlier in this thread and apparently does not agree that chemo is not necessary...unless I read it wrong...

ANZ J Surg. 2001 Jan;71(1):27-31.

Tubular carcinoma of the breast: prognosis and response to adjuvant systemic therapy.

http://www.ncbi.nlm.nih.gov/pubmed/11167594

CONCLUSIONS: Compared to other histological types of breast cancer, tubular carcinoma has a better long-term prognosis. Adjuvant chemotherapy may further improve prognosis and involvement of axillary nodes may not be an indicator for early death due to breast carcinoma.

Feb 21, 2011 10:58PM - edited Feb 22, 2011 08:28PM by isee

Well...the way I look at it, any cancer will kill you eventually if you don't take care of business. I also agree, based on what I have been reading, that you won't die of TC of the breast, but if not treated, I would imagine that at some point, it would show up elsewhere in the body, and that could be even worse.

I plan on doing pretty much what my doctors recommend. I don't know what it is like elsewhere, but after my experience so far, I feel very glad to be living in Canada...I can't imagine what this would have cost me so far if I was having to pay cash. I'm also sure my docs are not going to recommend something that I don't really need. The bottom line for me, I want to be treated as they would treat their wife, mother or daughter.

Feb 28, 2011 08:55AM hopefor30 wrote:

I would also like to point out that you can always try tamoxifen and see how you react.   You don't have to stay on it if it bothers you.    Although my pure tubular was only 3mm, I had a 6cm span of DCIS  - high grade with necrosis.    I had two different kinds of cancer.    Tamoxifen is also good for high risk DCIS.     You didn't say what the pathology on your DCIS component was...

I had a mastectomy due to the DCIS not the tubular invasive.    I have now been on tamoxifen for 3.5 years and doing well.   The panic before taking it is much worse in some cases than the reality.   I read all the bad stuff and was afraid to take it, but now I am glad that I did.    I did not, however, do chemo or radiation and I am glad to have escaped that. 

Mar 10, 2011 02:10AM isee wrote:

Hi girlsmom3,

Thanks for the update....very happy to hear that you don't have BC ...really sorry to hear that you had to go through all this though.

I'm still waiting to hear my pathology report...tomorrow is my big day. Been waiting about 3 weeks!

Mar 16, 2011 09:48AM - edited Mar 16, 2011 09:51AM by Cocococo

Evebarry  if you log on to Adjuvant online as well as other breast cancer survival calculators such as those on the Livestrong Lance Armstrong site, you can input your histopathology results and come up with stats, pie charts, graphs etc about all sorts of things including overall survival [OS] , cancer free survival and disease free survival. My stats were with tubular BC and other features I had, I had a 5% chance of BC recurrence in next 15 years . My BC death stat was 1%. I well qualified Swedish Radiation Oncologist calculated it separately for me and came up with 0.87% so that is pretty consistent.

Another way of analysing it using these tools was to see how long with BC cut off my life - answer was around 9 months so instead of dying in 31 years, I would pop off at 30 years and 4 months. The IF about all this is of course if I have no mets. You can slice and dice the stats in these various sites in many chilling but interesting ways!T

May 18, 2011 01:32AM - edited May 18, 2011 01:38AM by isee

Hi peppopat,

Really sorry to hear about your situation....what did your docs tell you two years ago and how could your HER2 status change?

I meant to add my diagnosis to this thread but guess I forgot...so here it is at the bottom of my post....I had my 10th of 16 radiation treatments today. My radialogical oncologist is having another look at my risk assessement to see if I can get away without Tamoxifen. I am a bit concerned about being under treated if I don't take it...and after reading that you are node positive peppopat, I'm even more concerned.

Oct 9, 2011 09:13AM - edited Oct 9, 2011 09:14AM by Cocococo

Hello Peppopat,

Its been a few months since your post and I was wondering how you were faring? Also wanted to comment:

1. when I said TC is favourable I did not mean TC that is left alone or untreated.  If its TC it is invasive cancer so not having it removed would be a very risky  move. I meant and I think most reseachers mean TC is favourable when treated. The extent of treatment required/recomended/desired depends on a host of factors. I listed my considerations when I accepted Oncologistsstrong  recommendation for no chemo and no hormonal or other adjuvant therapy. Radiologist still recommended I have radiation but after rewviewing all the stats and facts said he perfectly understood why I might chose not to have it as the benefit was so slight in my case. Other more advanced TC may have stronger stats in favour of radiation. I have not encountered anyone thus far who has recommended zero treatment for TC. 

 2. It is not unusual for HER2 status to change. A number of researchers are recommending that the test be done as time goes on for this reason. Also, it is always possible for the original HER test to have been wrong. Theories about why HER status change vary but some think the treatment itself could cause this change while others think it may be a variant on the way particular cancers evolve. Another theory is that being unwell or run down could make this happen.  

Oct 18, 2011 08:31AM hopefor30 wrote:

I had pure tubular as well -- my BRCA was negative.