tubular carcinoma
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.
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I didn't have a pure tubular cancer which, as you stated, is rare. I had invasive ductal (IDC) with tubular features. To be considered a pure tubular cancer, the tumor has to demonstrate a high percentage of tubular features - something like 75% -100% depending on the pathology lab doing the testing. IDC with tubular features is also usually a low grade/grade 1 tumor but exhibiting less than the 75-100% tubular features that's required of a pure tubular cancer.
But I do understand why you would wonder if so much treatment is necessary for that type of breast cancer. You obviously have a fairly good understanding of the type of cancer you have or else you wouldn't even be pondering that type of question. Personally, I don't think it's necessary but current standards of care don't really take the very low risks associated with tubular breast cancer into consideration when making treatment recommendations.
Perhaps when someone is very young it makes a bit more sense to be more aggressive with treatment of a very low risk breast cancer, but I had just turned 49 when diagnosed and was already in menopause. I didn't allow any treatment other than a wide excision lumpectomy and SNB (just one node removed) and honestly didn't have much, if any, reservations about doing so once I got over the initial shock of diagnosis and could think clearly. But I wouldn't have hesitated, even for a New York second, had mine been a pure tubular. I feel very fortunate that my invasive BC was just a small, low grade IDC with tubular features, but I would have been even more pleased if it had been a pure tubular like yours.
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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.
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Hello Aner18,
I too was diagnosed with tubular breast cancer (altho I think mine was mixed). There is a very good scientific paper entitled: Tumor Characteristics and Clinical OUtcome of Tubular and Mucinous Breast Carcinomas. Its in the Journal of Clinical Oncology vol. 17 (May) 1999. pg1442-1448. This is probably the best scientific publication on tubular breast cancer.
Best,
Every8thwoman
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Thank you all for your responses. All great feedback and information which helps me so much. I so much want to be done with tamoxifen and all the follow up visits, and all the ramifications from treatment. I am resonating with the fact that tubular carcinoma is low risk, not no risk. I have less than two more years to be on it and then I will be up to 5 year mark. I think the last of the long haul is difficult, but I have to go through it and make it to the finish line.
Thank you all. I so much appreciate the posts.
Aner18
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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.
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Just went to a genetic counselor about BRCA test. She metioned that having tubular cancer is actually in my favor as it is often not associated with gene mutations. So, all in all it seems like a favorable type of cancer (if there is one!). Have a good day, ladies!
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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. :-)
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My oncologist finally called about my Oncotype results. Seems that there wasn't enough tissue left from my 2mm tumor for them to test. So no results for me. My oncologist is not recommending any additional treatment at this time. He feels the risks of tamoxifen outweigh the benefits in my case. I'm not sure how I feel. Part of me says be thankful that it's tubular, stage 1, grade 1 and move on. Part of me is paralyzed because we don't have the test results to base decisions on.
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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.
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Hi everyone,
I am a 52 year old female with a very strong family history of breast cancer. Mother, aunt, sister (at 37 years), great grandmother. My mother and sister had DCIS and are both fine. My sister is now 56.
I was recently diagnosed with Invasive Tubular Carcinoma after several mammograms, an ultrasound, and a fine wire biopsy on Jan. 28th. They initially thought it was either Stenosing Adenosis or DCIS. The sample had to be sent to another lab for confirmation of the diagnosis which I received 13 days after surgery. The pathology report states "The sections show breast containing a very subtle invasive tubular carcinoma...It is associated with many ducts showing DIN1B (so called atypical ductal hyperplasia) and DIN1A (so called flat epithelial atypia)." On Feb. 16th, I had a partial mastectomy (my breast still looks pretty normal) and sentinel lymph node biopsy and am currently waiting for the pathology report that will give an indication of if this cancer has spread ....or remains localized in the breast tissue. I'm confused about the ITC diagnosis...It sounds to me like there is also a lot of DCIS in this breast, but I thought it had to be 75% Tubular to be called TC? Is the prognosis for ITC the same as for TC ...are they the same thing? Any thoughts on this? I'm hoping to get more information early this week. My surgeon said that if we don't get clear margins on the surgery I had on the 16th, that I would have to have a 3rd, possibly a full mastectomy. As of now, he says I will need radiation and if the lymph nodes are not clear, I will also need chemo. I hate the waiting...
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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
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Hi girlsmom3,
Thanks for your reply...that all makes sense...including the DCIS component...you must be correct and it must be ductal carcinoma of a tubular nature.
Very sorry to hear that they can't find your suspect spot again. Hopefully they will without too much more poking and proding! Please let me know what your results are.
I'm so glad I found this site...thanks again for your reply and I hope you have a marvelous Monday!
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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.
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I am SO in the same boat with the rad/tamox opinions.
Since the first OP was a barn job and most taken out on CNB, without a DEFINATE fins in my last iopsies I can NOT justify treatment. HOWEVER even though it is tubular, there are still instances with mets (bone being the favorite as far as I know) It is not harmless, it still is cancer...maybe like strep throat instead of double pnumonia
The rads terrify me incase of a bigger situation in the future and the tamox, even though I am 100% E (and 75% P) still will send me into a health anxiety whirlwind.
It is so hard to be on the fence. It is so hard to pick a side too. I almost feel as if <i'm damned if I do and be really damned if I don't. How i wish to the heaven above that my lumpectomy wasn't screwed up
((( going on 2.5 months with no answer.....i kind of pray that tomorrows reult with show just 1 tiny cell....just so we can continue with a clue as to what step should e taken next. 0 -
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.
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I know that my tumor also has mucinious features. I do not yet have my fnal pathology report. I read that the mucinious and tubular are very slow growing cancers. They rarely invade nodes or mets. I have read and heard of a few women who have had later stage mucinious cancers...rare! My question is how many women with tubular cancers died due to tubular cancer? Sorry, but I'm trying to see how serious this type of cancer really is. I'm dealing with this right now.
I heard a doc say this isn't the type of cancer that's going to kill you.... hmmm...what does that mean?
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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.
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girlsmom3 did you get your results today?
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Hi isee...i am NEGATIVE all the way around.....mri and both core needle biosies....not one single cell....the result is Fibrosis NOT tubular!!!!!! next step, the lawyers office when i get my strength back from all of this.
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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!
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Evebarry thank you for your kind words. I should have added that I take my Survivorship Planning very seriously and I am on a strict regime of a breast coil MRIand ultrasound [no radiation involved] at six months, full physical with very experienced breast surgeon [his breast exams are intense and strange and almost as strong as the compression from a mammogram] and a mammogram, with out without ultrasoud. I spread these visits out over a 12 month period. I am resigned to or accepting of the need to keep up this regimen for at least next 5-10 years and possibly the rest of my life. Mammograms have - to my mind- unacceptable failure rates especially in dense breasts like mine and are less sensitive at picking up invasive cancer compared to MRI. MRI more sensitive at detecting invasive cancer BUT less sensitive with other types. I keep an option for CTscan up my sleeve in the highly unlikley event I get mets - I wasnode negative BUT there are rare cases of mets developing through other systems in the body and by-passing the axillary lymph nodes. Each CT scan is the equivalent to 2,000 xrays so I am not going to expose myself to that without serious justification! Many Drs support physical exams as the main follow up BUT most specialist tell me the lump has to be 1cm or more to enable them to feel it and I don't want to wait till its 1 cm for it to be detected. Also, after the manual breast exam from the highly experienced breast surgeon,I realise NO manual breast exams ANY other Dr had performed on me had been anywhere near as intense or thorough. I would not rely on a GP for my breast exams nor even an inexperienced surgeon. I have seen recent research to the effect that the women with BC who survive the longest have one characteritic in common - highly experienced breast surgeons. I also feel doing breast exams myself is practically useless although I know there is this empowerment movement encouraging us to do it. I simply don't have the skills although obviously I keep a close eye on any changes. Bottomline - whether you have Tubular carcinoma or not, and irrespective of the treatment you opt for, as breast cancer survivors we must take control and insist on active follow up to ensure survival.1
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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
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I have tubular and didn't take care of it when I should've. Not my fault. I blame my PCP doctor and radiologists for calling all wrong two years ago EVEN THOUGH I HAD A VERY OBVIOUS PALPABLE MASS. Now, the tubular hit one of my nodes so all the so-called good news about having pure tubular is way overrated. I just finished having the lumpectomy Apr 2011 and will most likely start Rad next week.1
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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.
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Isee,
My Doctors have not talked to me about how HER2 goes from positive to negative when it becomes invasive. Most DCIS is usually positive. I have not seen a medical oncologist or radiology oncologist yet that could explain that to me---BUT SOON.
If it's any consolation to you about my 1 node positive for PR and Keratin (The 99%ER+ just disappeared altogether when it hit the node-- so go figure), my surgical oncologist does not believe I need a completion axillary so I'm happy about that. I came to find out that even having positive node or two is not the end of the world. Keep in mind, my BC is not IDC, it's TC (Tubular Cancer) which is supposed to a favorable subtype of IDC but only time will tell. Good luck to you and don't worry too much.
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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.
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Hi fellow ITCers. I just got the results of my genetic testing. I do have the BRCA2 gene mutation.
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Hi, everyone. My initial biopsy path report says:
"Invasive Ductal Carcinoma with Prominent Tubular Features; ER, PR, HER pending"
Anybody else have that exact phrasing on their path report? Any chance that meets the threshold of 75% tubular? (The word "prominent" I mean)
If you had such a notation on your biopsy path report, please tell me what your final staging and prognosis and treatment was. For the first time in days I have hope that I'm not dying!!!!
xoxoox
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I just received a call from my oncologist stating I may not need to have chemo after all! I don't know what to think because my cancer this time was stage 2, I actually had one lymph node positive. I'll find out on th 23rd about yes/no chemo once the Tumor Board looks at it.
Anyone else have mixed tubular and other types AND a positive node? I always knew I was special, but is is ridiculous! I already cut my hair super short for chemo! Haha0 -
Hi Rain...sorry you are dealing with this sh-t a second time. I had ITC...I checked out the other thread and saw that you are having chemo...was glad to hear this as if it's in your nodes, I would think it would be imperative. So much for ITC rarely going to the nodes eh? (Pardon, I'm Canadian)
I hope your treatment goes well!
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