Posted on: Aug 28, 2010 03:45AM
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.
Posts 31 - 60 (398 total)
Oct 16, 2012 09:05AM RainMaze1962 wrote:
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! Haha
Nov 6, 2012 01:14AM - edited Nov 6, 2012 01:15AM by isee
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!
Jan 25, 2013 10:33AM vrsecond wrote:
I was just diagnosed 1/14/13 awaiting MRI 1/29/13 then meet with surgeon to determine course of treatment. I'm scared. here's the path report notes:
Invasive duct carcinoma well differentiated (tubular carcinoma). No in-situ component present. ER/PR+ Her2neu Negative
Anyone have any insight for me? thank you for your help!
Jan 25, 2013 10:55AM voraciousreader wrote:
Vrsecond... Register at the NCCN website and check out the 2012 breast cancer treatment guidelines... Professionals version... Not the patients version. Tubular and mucinous ( which is what I have) have their very own guidelines. Our mucinous thread is a little more active than the tubular thread. I hope someone with tubular will reply. I will say that pure tubular and pure mucinous BC have favorable prognosis'. I wish you well!
Feb 19, 2013 03:19AM TaTaForNow wrote:
Vrsecond, Just saw your post and Voraciousreaders suggestion to check the NCCN treatment guidelines - great idea. How are you now and have you made your treatment choices?
Mine was a pure tubular Got a second pathology report from another hospital to be sure it was pure (that is, over 90% tubular). For me this helps to figure treatment. I think if it's less than 90% tubular, you can get different treatment outcomes - so the data in these studies may not apply.
Local oncologist and radiologist offer the standard treatment (rads, no adjuvent per the NCCN guidelines). However my breast surgeon understands I don't want to overtreat and is agreeable to increased surveillance if I don't have the rads (ultrasound, breast check. maybe MRI at 6mos).
Cocococo, Voraciousreader, MarieKelly and others - you really helped me learn to think about this problem and consider treatment decisions. Thank you.
I'm getting a second opinion from a teaching hospital next week - by the end of the month I should be able to make a decision that makes sense to me. Which may be nothing more than increased surveillance.
Also, Oncotype and KI-67 cell proliferation test make treatment (for me anyway) more of a reasoned decision. Although there is still a guesstimate factor.
Good luck fellow tubular!
Feb 19, 2013 04:20AM BookWoman wrote:
This is my first time posting. I've been debating where to start as there are several threads that apply. I was glad to see the tubular thread had some activity. I was diagnosed in December, had BRCA testing as this is my second BC in just over two years (negative ) and am now waiting for Oncotype results.
Feb 19, 2013 05:26AM - edited Feb 19, 2013 05:27AM by voraciousreader
Welcome sisters. Hope this thread doesn't have to become too active! I hope you all can come back here and can help others thru their journey. On the mucinous thread, I put links to all the journal studies on mucinous breast cancer. Some of the studies include tubular... Perhaps one of you can do the same here....there needs to be a place for the newly diagnosed to find as much info on our rare favorable types of BC.
I wish all of you newly diagnosed well during the time it takes to make a treatment decision and especially well during active treatment.
Feb 28, 2013 02:09AM voraciousreader wrote:
momof5inva...I found this abstract:
Clinical-pathologic features and long-term outcomes of tubular carcinoma of the breast compared with invasive ductal carcinoma treated with breast conservation therapy.Liu GF, Yang Q, Haffty BG, Moran MS.
Department of Therapeutic Radiology, Yale University School of Medicine, New Haven, CT 06520-8040, USA.
To evaluate our institutional experience of treating tubular carcinoma of the breast (TC) and invasive ductal carcinoma (IDC) with conservative surgery and radiation therapy, to compare clinical-pathologic features and long-term outcomes.
METHODS AND MATERIALS:
A review of our institution's tumor registry from 1975 to 2007, followed by a central pathology review of available slides, yielded 71 cases of Stage I/II TC and 2,238 cases of Stage I/II IDC treated with breast conservation therapy. Clinical-pathologic features and outcomes were analyzed by subtype to detect significant differences.
The median follow-up was 7 years. The TC cohort presented more frequently with pT1 disease (97% vs. 80%, p = 0.0007), pN0 disease (95% vs. 74%, p = 0.0004), hormone-receptor positivity (ER+, 89% vs. 62%, p = 0.0001; PR+, 81% vs. 52%, p = 0.0001), and HER-2 negativity (89% vs. 71%, p = 0.04). Clinical outcomes also favored the TC cohort, with lower rates of breast cancer-related death (1% vs. 10%; p = 0.0109) and distant metastasis (1% vs. 13%; p = 0.0028) and higher rates of 10-year overall (90% vs. 80%; p = 0.033), cause-specific (99% vs. 86%; p = 0.011), and disease-free (99% vs. 82%; p = 0.003) survival. There was a nonsignificant trend toward improved breast cancer relapse-free survival for the TC cohort (95% vs. 87%; p = 0.062) but no difference in nodal relapse-free survival or contralateral breast cancer relapse-free survival (all p values >0.05) between the cohorts.
Our institutional experience suggests that TC, when compared with IDC, is associated with more favorable clinical-pathologic features and comparable, if not superior, outcomes after breast conservation therapy, suggesting the appropriateness of a conservative approach to this rare subtype.
Notice there were 71 cases of Tubular bc. Of them, 89% were ER Positive. So, while Tubular is rare, Tubular that is ER NEGATIVE is rarer...occuring in 11% of cases. But notice, according to this study...at 10 years...disease free survival was 99% for all cases. So, even those who were ER NEGATIVE, they had EXCELLENT outcomes.
I think it's a great idea to have the Oncotype DX test. However, for Tubular and Mucinous breast cancers, the test is not as strongly validated as it is for "traditional" types of breast cancers.
Good luck. Let us know your score and decision.
May 27, 2013 12:47PM - edited May 27, 2013 12:51PM by raspberry
- in this rather small group of people. It is strange to be diagnosed with a rare-ish form of IDC. I gather mine is pretty much a "pure form" - they don't give me as many details as I would like on these histology reports.
Anyway, survival rates seem to be really good with or without radiotherapy, but in New Zealand, where I am, although they are careful not to over-treat, I still still have to do radiotherapy, with my first session tomorrow, the dry run for measurements etc.
I wonder if they have considered that I may not need the radiotherapy. Although lumpectomy followed by radiotherapy is standard for all breast cancers in NZ, as a minimum treatment it seems. I got off having to take Tamoxifen though, as it only improved my survival by 1.7% and my surgeon said "it is not an innocent drug". I hated the sound of the side effects. I have my ovaries, but had an abdominal hysterectomy last year. Although I don't get periods I have absolutely no symptoms of menopause yet at 50. I really am glad I can go naturally towards that and not suddenly.
I am more afraid of depression than anything and there was a chance of that with Tamoxifen. That definitely was the worst disease I ever had.
As my tumour removed was 1.6cms I am ok about having radiotherapy, as anything over 1.5 can mean it could have gone somewhere, although my lymph node was clear (the removal of that is much ouchier than the breast part of the op isn't it?)
Anyway, is there anyone out there who had a lumpectomy only, because it is tubular carcinoma, because their doctor recommended no further treatment?
I believe I may have caused this cancer by drinking alcohol, a moderate to heavy to drinker, only had about three days off per week and when I did drink it was 4+ either wine or a third of vodka, a bit heavy I must admit.
Since diagnosis I have completely stopped drinking and lost four kgs, as a result. I am at my perfect weight for me, under 63kgs
My doctor took large margins, as I requested, since the affected breast was quite a different shape and larger (it had become a different shape - that was my symptom, but it had always been larger). With such large margins, they were clear.
Along with the 1.6cm cancer there are 8mm of cribriform carcinoma in situ, so 2cms all up of bad stuff.
May 27, 2013 09:59PM voraciousreader wrote:
Rasp....First off, I'm sorry to hear that you were diagnosed with tubular breast cancer. As you know, the prognosis for tubular breast cancer is excellent. Regarding radiotherapy, as you mentioned, the standard of care for most patients who have a lumpectomy includes radiotherapy. You can check other threads here at bc.org regarding radiation therapy. Most patients who do decide to have radiotherapy do well with few side effects.
Regarding alcohol consumption, there are numerous MIXED studies. In April a small study suggested that mortality rates of breast cancer survivors INCREASED from alcohol consumption. Likewise, there are studies that have said that overall survival improved from moderate drinking because of it's effects on the heart. The good news for you is that your decrease in alcohol consumption improved your weight. There is evidence that for ER positive tumors, additional weight is a no-no because it fuels your body's estrogen which in turn affects breast cancer. So, IMHO, I would suggest if you want to drink alcohol, that you consume it wisely and try not to worry. I wholeheartedly agree that depression is an awful illness. So you need to concentrate on feeling well and do the things that keep depression at bay, and of course, do the things that make you happy.
I wish you well.
May 27, 2013 10:53PM auntienance wrote:
Thank you all for all the information you have provided. I have a very confusing diagnosis. Although my tumor was 95% tubular, my oncotype score came back a 26. When discussing my treatment options with my MO I questioned him about what seemed a rather high score for such a tumor type. His opinion was that the test caught something that the human eye (pathologist) missed. Obviously not very comforting to someone looking for the most positive outcome. At any rate, I'm happy to read about others experiences with this diagnosis. Info is sometimes hard to come by.
May 27, 2013 11:33PM voraciousreader wrote:
auntie...Here's a retrospective study from 1999 regarding tubular and mucinous breast cancer:
Regarding the Oncotype DX test and tubular and mucinous breast cancer.....For our types of BC the NCCN do not mention doing the Oncotype DX test even though it is recommended for "traditional" ER positive, HER2 negative tumors. I am pleased to hear that your doctor and mine recommended the test. I can only guess why the NCCN guidelines do NOT recommend the test for us. First off, it "usually" means we have an excellent prognosis AND the test is NOT as strictly validated for us because it is so rare. However, there is some research which seems to validate that most patients who are OncotypeDX tested, will receive low scores. But, as your situation shows us, there are ALWAYS outliers. Thank goodness your physician had the foresight to request the test!
I wish you well.
May 28, 2013 09:34PM - edited May 28, 2013 09:41PM by raspberry
Thanks Auntie and Voracious - so today was just a consultation with the oncologist, not the measurements etc., so that is next week. An MR scan and all (eek, a bit claustrophobic).
So now the oncologist is surprized I haven't been recommended Taxomifen as well and I told her the surgeon thought I didn't need it. I was told I needed six weeks radiotherapy and then today I was told it was three weeks plus a booster into the bed where the tumour was, 56 gys all up I think?
Opinions sure do vary out there amongst the medical professionals. Oh, I just want to get on with the radiotherapy and then I won't feel weirded by the next unknown factor of this journey.
I haven't heard this for years, but she said I was "young" to get cancer at 50 and that in itself was something of a risk factor because I am still premenopausal, as far as I know (no uterus, just ovaries).
The oncologist also said lumpectomy and tamoxifen is as effective as lumpectomy and radiation? - that's a new one?
In regards to alcohol, I find it hard to have just one drink, so I just abstain - I like 4! but now I haven't been drinking, I don't want at all. Its about as attractive to me as smoking, which I gave away 30 years ago.
My main reason why is that even three drinks a week, spread out over a week, is known to triple the chances of reoccurence for those who have had BC (as someone said above - much worse for someone who has had BC).
In regards to a score, I had a score of 12 for a test for ovarian cancer about 1 year ago - but since then it turns out that test is more accurate testing breast cancer. That 12 was in relation to 32 being the limit where it becomes suspicious for cancer circulating - I wonder if this is the same test. I must find those bits of paper.
Jun 1, 2013 09:28PM raspberry wrote:
The penny just dropped for me "breast conserving therapy" is a two step process - it always involves radiotherapy, as well as surgery, unless you are over 70 years of age, on some kind of hormone therapy, have clear nodes, small tumour etc.,
So there you have it. Only experimental studies are having women try lumpectomy with no radiation. Of course, I can opt out, but it would be a bit foolish. All the predicting programmes online assume both steps are taken.
Jun 2, 2013 12:38AM voraciousreader wrote:
Rasp.... Looks like you are voraciousreader 2!! Good luck with your active treatment. I wish you well!
Jun 9, 2013 06:59AM - edited Jun 12, 2013 08:54PM by raspberry
I am probably not going to go for radiation. I will be my own experiment. I will be going for another meeting with the RO, this time I will know more and she assures me that she wishes to discuss a number of interesting points I raised in regards to my statistics. I was blind sided by her not even mentioning any specific to me at the first meeting.
I went home and looked up my stats and wow, there isn't much benefit in rads for me. An absolute maximum risk of 8.3% recurrence rate which could be improved down to 2.5% recurrence rate with rads, but I don't want rads for such a small shaving off that percentage, when 7.3% is the New Zealand rate for women AFTER radiotherapy.
I think I will take my chances. I felt very irresponsible when I first decided I didn't like the sound of "pretty much guaranteed lung scarring", and I have had a couple of really bad days trying to make up my mind - in fact, this decision has been the worst part of it so far, and hopefully the last part of it. I think I will fly free from further treatment. I have massive clean margins, no LVI, no nodal involvement.
She assures me the next meeting will be just so I am sure of whatever my decision is, as opposed to the veiled threat I got from my nurse when I told her I didn't want radiotherapy "if I had known you were going to be like this - we would have given you a mastectomy".
Aug 23, 2013 12:24AM voraciousreader wrote:
Yep! Rare breast cancers need more than one and even sometimes more than two reviews! Glad to hear you went the distance and thanks for the update!
Dec 5, 2014 07:25PM becca333 wrote:
Age 64, Dx 4/07/2014, IDC, Type- Cribriform Tubular, 1cm ,grade1, stage1, ER+95%, PR+90-95%, HER2-, Node Negative, OncotypeDX Score 8.
Surgery: 5/15/2014, Lumpectomy (Right), Clear Margins.
Recommended Treatment: Radiation Therapy - 25 secessions with 5 secession booster, Hormone Therapy (anastrozole for 5 years)
After doing extensive researching on both the type of cancer that I had versus the recommended standard treatment given me, I discovered that the treatment recommended for me was the same for patients having stage 2, 3, and 4 ER+,PR+, Her2-, Node Negative cancers. How could that be? I chose not to do radiation or hormone therapy. Instead I would detox my body by eating right and exercising. I would find out how I got cancer in the first place.
What was causing my estrogen and progesterone levels to be so high? What could I do to naturally lower my estrogen and progesterone? While researching how I could test my estrogen levels, I came across articles and ads about cancer patients and the importance of testing ones PH levels. The articles explained how cancer grows and thrives in acidic environments and environments low in oxygen, and that cancer CANNOT thrive or grow in alkaline environments or environments high in oxygen. The articles claimed that cancer patients have acidic PH levels. Was that true, was my PH level acidic like the article had claimed? I rushed to the drug store to buy a package of PH testing strips to check my PH level. To my surprise I was totally acidic. I immediately began researching on what I needed to do to become alkaline. While researching, I came across articles about how by taking 1 teaspoon of baking soda with a glass of water will immediately bring a persons body into an alkaline PH balance. Better yet, by taking 1 teaspoon of baking soda with a glass of water once or twice a day, (depending on how acidic a persons PH level is) will not only prevent a person from getting cancer, but will also prevent those who had or have cancer from their cancer returning. And even better than that, the article claimed that baking soda also gets rid of cancer tumors within a six week period.
It was now 5 months after my lumpectomy. I had started on the baking soda regimen for 3 days. I noticed a small lump in the same spot that the tumor was removed. Could it be scar tissue or another tumor forming? To be safe I went to see my family doctor. After examining the lump, my family doctor recommended that I have an ultrasound done. After leaving the doctors office while driving home in the car, I started to second guess myself as to whether or not I did the right thing. Should I have done the radiation treatment, would that have helped? And what about the baking soda, it was only day three. Should I immediately rush to make the ultrasound appointment or should wait 5 1/2 weeks to see if the baking soda regimen really worked or not. How would I know if I didn't at least give it a try. So I decided to wait. As the weeks went by I kept feeling the lump. Some days it seemed smaller, than others days it seemed to feel the same. On week five I went in for the ultrasound. It was on a Thursday. The ultrasound reading came back reporting a suspicious malignant tumor. A mammogram was also done confirming the ultrasound reading. A biopsy was scheduled for the following Tuesday. Over the weekend I kept feeling for the lump. It was there on Thursday, I had taken a picture of the tumor on Thursday from the ultrasound screen with my iphone. It was now Sunday and I couldn't feel lump. Was it possible that the tumor could disappear that fast!
My husband went with me for the biopsy. When my name was called, both myself and my husband were escorted into a sterile operating room where biopsy instruments were lined up neatly ready for the surgery. I was told to put on the famous hospital gown, to relax and not to worry, that the doctor would be in shortly. Within a few minutes the doctor came in the room. After washing hands, the doctor put warm ultrasound gel on the area of where the lumpectomy tumor was located and began going back and forth over the area to locate the new tumor of which it could not be found. The markers from the lumpectomy were located but nothing else. No tumor, nor scar tissue, no nothing. I couldn't believe it!
Another month and a half has passed and I haven't missed a day of taking 1 teaspoon of baking soda with a glass of water. I couldn't feel any better than do or be any happier than I am. I am still shocked by the whole thing. To think that something as little as baking soda can change a persons PH balance from acidic to alkaline, and also dissolve cancer tumors, not to mention prevent cancer tumors from forming.
I hoping that this information will be of help others. And I'm wishing everyone the very best no matter what cancer treatment options they choose.
God bless all.
Dec 5, 2014 09:45PM - edited Dec 5, 2014 09:46PM by Moderators
As you noticed this thread has not been active in awhile and that may impact your receiving responses. Perhaps you might consider starting a new topic and posting your experience, maybe under the Alternative Medicine forum would be a better option, for to the content of your post.
Mar 21, 2015 12:11AM 99eagle wrote:
I had an initial biopsy showing DCIS. I recently had a lumpectomy but the sentinel node was not removed. The biopsy from that showed tubular carcinoma. Now the oncologist is wanting the sentinel node removed for biopsy, but since the tumor is less than 1cm I am resisting. Will have radiation therapy.
Has anyone had tubular carcinoma where the sentinel node was not removed, and what was the long-term outcome. I am 75 years.
Mar 21, 2015 02:38AM voraciousreader wrote:
eagle...I strongly recommend that you register at the NCCN'S website and read the professional version (red logo) of their breast cancer treatment guidelines. Specifically, read the page devoted to mucinous and tubular breast cancer. That said, when there is invasive cancer, the standard of care recommends checking lymph nodes. Furthermore, there is evidence that older patients may not need radiation.
You don't mention the size of the tumor nor other specifics. If it is ER + andHER 2 negative, you might request the OncotypeDX test. Please keep in mind that for favorable rare types of breast cancer, the OncotypeDX DX test is not as strongly validated as it is for other types of BC.
I wish you well!
Apr 5, 2015 02:11AM carolh75 wrote:
I had a lumpectomy 2 days ago. The sentinel node was not removed. I am 72 years old. I have an appointment next week to see my oncologist. I have a pure tubular carcinoma, that is 4.5 mm. I hope to forgo radiation and hormones. I will find out more next week.
Apr 5, 2015 02:33AM voraciousreader wrote:
Carol...I hope you will read the NCCN's breast cancer treatment guidelines (professional version-red logo) at their website. Specifically, read the page devoted to tubular and mucinous. From your description, you may very well be able to CONSIDER NOT having additional treatment. Your prognostics are excellent. That said, because you have excellent prognostics, you have many choices to make. I wish you well.
Jun 3, 2015 02:36PM NATSGSG wrote:
Just stopping by to wish everyone well, and to share a hello a link that contains scientific articles of Tubular breast Cancer that I hope will be informative and of use to you. You may have to sift through the titles and find the ones pertinent and interesting. I've posted the same at another thread of the same title, but thought pasting it here will make it convenient for you.
Also, please consider going to this site, the Society for Immunotherapy for Cancer (SITU) to see if they have anything on this disease using immunotherapy (current hot topic in cancer treatment) to treat it. You may wish to consider having them include you in their distribution list for any latest development and updates?
Below VIDEO link tells you what the current hot topic in cancer treatment, Immunotherapy is. Fascinating to watch.
Sending everyone daily well wishes in your journey. Do take care, and have a wonderful summer @@!@@
Jul 22, 2015 05:49AM Dina44 wrote:
hi need help
The symptomatic lump lateral to the nipple is 29.20.29mm irregular low reflectivity mass calcification a are seen at11-12o'clock with irregular segmental low reflectivity tissue with associated increased vascularity u5U
Us axilla RT multiple small nodes a couple of which have vortices which appear thickened in relation to short axis
Distortion spanning at least 40 min the breast centrally with malignant segmental calcification extending from within 2 mm of the nipple which is slightly retracted
Can any one help me please