tubular carcinoma
Comments
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That's good to hear. I hope all is still good and you are sleeping well. Can I recommend " Killing Eve" box set if you can get it in the US?
Keep in touch. Wishing you all the best.
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Hello Applejuice,
Hope you're recovering well!. Just wanted to mention that if I'm correct, I don't think that the fact that your ER+ & PR+ numbers are high is a negative--just tells you that tumor is receptive to hormones, which is usually a plus because it may be easier to treat with hormone blocking drugs.
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I found a very interesting study, as the first one classifying the cases based on the percentage of tubular cells in the tumors. My tumor was pure tubular and most studies of tubular carcinomas do not clearly differentiate based on the percentage of tubular cells. I post the link just in case someone will find the results interesting. Unfortunately it only reviewed 100 cases, not a large number but hope the information is relevant.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1345032/?page=10 -
I just want to point out that the article was written in 1981...so it is around 38 years old. I believe this article is more in line with what is recommended currently.
https://www.breastcancer.org/symptoms/types/tubula...
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I just want to point out that the article was written in 1981...so it is around 38 years old. I believe this article is more in line with what is recommended currently.
https://www.breastcancer.org/symptoms/types/tubula...
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sorry i overlooked the date it was published, removing the post.
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I'm atrocious at links but from time to time I google "pubmed" and search "tubular breast cancer 2019" (or 2018). I never read anything over about 10 years old. Are you a stats person? I am. The articles are all very reassuring. Have you got your pathology results back? How are you feeling now?
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Applejuice,
FYI, Look at my post dated 4/29/18, for the latest research up to that date.
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I got the pathology back and I was a little bummed. While the margins were clear and there were no other major issues, the type is no longer clear to me! The pathology for the breast tissue after surgery was done by an UCLA Lab and they say: "Multifocal invasive ductal carcinoma with tubular features, grade1". Then, in the synoptic checklist, where it should specify the histologic type, it says "Invasive carcinoma of no special type - ductal, not otherwise specified".
The former Lab which did the biopsy, at another hospital, stated: "Infiltrating well-differentiated duct carcinoma - Pure tubular carcinoma".
I asked the oncologist at UCLA about more detail on the type and she said they go by the breast tissue pathology result and they do not inquire the lab for more details. She is not seeing the tumor as TC
So I feel there is something a miss as the UCLA report says "tubular features" but does not detail on what that means. I don't have a way to contact the pathology lab directly and request more details and the oncologist says no need more details on the type!
I am a bit frustrated because I feel the type TC would be giving a better hand at cancer versus just IDC but i dont know if there is any different way to proceed on this. Maybe it's just me not understanding the types properly?
Thank you, I already went thru all the links you posted to studies related to TC and i much appreciate your effort to provide so much content! The study I initially pointed to was showing a comparison of outcomes based on the percentage of tubular features. I think it was relevant, the data was compiling info of 100 patients with TC, but it was done in 1981, so I prefered to remove it since there was an objection to it.
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Hi applejuice,
Was reading your post to grainne, & thought I'd comment. I can understand your frustration with the pathology reports & tubular versus IDC, but as you probably know, Tubular is a form of IDC. Although tubular has a somewhat more positive prognosis, non-tubular IDC, Stage 1, Grade 1, also has an excellent prognosis. I had also commented previously on some concerns you had about your ER+, etc. values, which are good! I'm not a doctor and understand your worry but to me, given your pathology, treatment, etc., your prognosis looks great!!!I
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Hi Benaya
Thank you again for all the encouragement! Yes, you are correct the overall prognosis looks good and TC is IDC, high Er Pr numbers mean the tumor cells are receptive to hormonal therapies, however my frustration over the details is there. It might be my OCD or the fact that right now i am thinking (luckily) I will live with this for the next 30 years and it'd better be clear so i can classify it accordingly somewhere in my mind.
Were your treatment decisions influenced by the tubular type? In my case, I feel I would chose to treat less aggressively if tubular vs if i knew it wasn't.
I know, I probably should not voice all these here, since there are so many less that lucky situations out there! Thanks for listening; thanks even more for understanding!
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You're welcome, applejuice!! I may be a little out of the norm, but my treatment decision wouldn't have varied significantly had I not been diagnosed with tubular. Initially, after the pathology came back, the surgeon I saw made no distinction between IDC & tubular & I don't think she was particularly knowledgeable about the research. I walked out of her office thinking radiation and hormone blocking drugs were a given--despite the tubular diagnosis. The facility I went to did not have an initial "team" approach which I think would have been helpful. Down the line, the radiologists, etc. become involved, etc. I walked out of there feeling like I needed to do more research myself. I was not as fearful of the diagnosis as I think you may have been. I actually became more fearful about the possibility of being over-treated with radiation and drugs that could have serious effects that I wasn't sure I could handle. I also declined sentinel node biopsy because I feared I'd be in that low percentage of women who develop lymphedema, and I kind of knew, on some level, that it hadn't spread. I did my own research on tubular & doubt any of the doctors would have looked at it much differently at that point in time. When I finally chose a surgeon, they agreed, based on tubular and the research I GAVE THEM, that it was probably safe to forego radiation. They recommended the hormone blockers as did the oncologist but I declined. I was willing to take the risk. I've dealt with a lot of depression, in general, and felt I couldn't deal with some of side-effects of the drugs. Also, I just really felt it wasn't necessary. So, the tubular type made me a little more comfortable with my decision, but it's very likely I would have decided the same without it. I'm probably the opposite of you in my thinking and approach. Also, my goal is not to extend my life as long as possible, but to minimize the daily stressors and try to enhance the quality of my life in the present. I did not think I could do that with any major interventions. Again, this was a risk---but one I was willing to take. I urge everyone to get several opinions from doctors prior to making any decisions.
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I agree Benaya. Everyone has to decide for themselves the approach they want to take. I had a lumpectomy Jan 22 2018. I had a 4 mm tubular carcinoma mass removed. 21 rounds of radiation thereapy (they reduced my 35 rounds after my own research) and no hormone therapy. I was lucky that I have medical professionals in my fam and all of my doctors were awesome and we were on the same page. You have to do what’s comfortable
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Hi CAM8,
Yes, you are fortunate that you had access to medical professionals & awesome doctors!. And, yes, everyone has to do what's comfortable for them but hopefully, with a lot of professional help along the way--with opinions that might vary which can made it difficult to decide--but in my experience, the more opinions the better and if you're in a position to do research yourself, all the better too.
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Yes for sure. Treatments that feel right for some may not be comfortable for someone else.
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I met with my oncologist for the first time last week, and she told me the type of breast cancer I have is tubular. I had previously thought mine was invasive ductal, so it was somewhat of a relief to find out it was the subtype, tubular. However, any cancer is bad news, this is the better of most diagnoses. Based on my conversation with the oncologist, whether there is any sign of cancer in my sentinel lymph node and the score determining the chance for recurrence will determine my treatment plan. I haven't had surgery yet, but a lumpectomy is planned. Once the other tests are in I'll know whether I will need to take aromatase inhibitor (since I am post menopausal) and get radiation, or whether the hormone treatment will be enough. It is doubtful I will need chemo.
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Hi kkayet,
Yes, tubular is a good subtype to have. If interested, I listed several articles awhile back on the topic if you're interested in reading about it.
Let us know how your surgery & test results go.
Best!
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Hi, all. I am home recovering from surgery. I ended up having a lumpectomy to remove a 2.5 cm ductal cancer tumor. No radiation planned and no chemo. Will probably need to take a hormone blocker for five years to reduce the chance of recurrence. However, I meet with my surgeons tomorrow and will learn the results of the pathology. Just for others who may be going through something similar, I had a lumpectomy removing tissue within 10 cm around the tumor. I have breast implants, which the incision affected, so both implants were replaced at the same time since they were at the end of their life (saline implants). Only one lymph node had to be taken (yeah), so I am taking that as a positive sign. By the way, if any of you suffer from post-operative constipation, warm lemon water is the ticket. I drank a mug of it in the morning (the juice of one whole lemon) and it worked wonders; it is a much gentler way to get regular. Best to all of you!
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Based on the pathology report from the tumor, my tubular carcinoma is most likely invasive ductal carcinoma, so possibly a new game plan on how aggressively (or differently) we need to treat the cancer-free breast. I had all clean margins and only one lymph node taken, and it was clean. I'm trying to avoid radiation, but that may mean more surgery. :-(
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I am just home from my 3rd annual mammogram (4 years post diagnosis). Thought i had got my head sorted the last couple of years and started believing it was actually gone and would not return. Called back in to have them redone and magnifications of an "area of concern". Mentally I just fell to pieces. Thank God, it was just scar tissue. I am still shaking.
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Grainne, totally understandable……... every time I go in for my exams I have to take a tranquilizer. It has been over 3 years and so far so good but I get filled with anxiety about a month before my mammogram /ultrasound..
Dx 9/16, Pure Mucinous, Lt, <7mm, Stage 1, Grade !, node neg, ER+/PR+, HER2-
Lumpectory/Radiation/ 2years of Arimidex
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WOW Grainne, glad it was not a recurrence. I have the BRCA2 mutation and get checked every 6 months...all we can do is hope I guess...and keep a watch. Much better to deal with little things than big ones!
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Thanks for the messages. I know we women with tubular and mucinous are the lucky ones and i am grateful for that. I suppose the anxiety will never go away.
This board has been quiet for a long time...I hope that means everyone is ok and just getting on with living their lives.
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- Grainne what is your ki67 value and percentage of ER and PR.
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I didn't get a ki67 value. ER was 100%. Pr was positive but I don't know the percentage. I tried A.I.s but couldn't endure them but am virtually symtom free on tamoxifen.
I see you are quite recently diagnosed. How are you doing? Have you a tubular diagnosis?
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It is not specified as tubular. But pathology report says predominantly arranged in tubes with nests and cords. Well differentiated score was given 1. Overall grade is 1
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Hi Grainne & Prahan: Thought I'd chime in (only check the board periodically). I'm doing fine since my previous posts on my tubular diagnosis and lumpectomy in 2017. I can't recall my Ki67, but it was positive in terms of prognosis; ER, 100% & PR, 60%. I opted out of all treatment (as explained in earlier posts) other than lumpectomy and am doing fine. Latest mammo results this month are negative for recurrence. Good to hear you're doing well Grainne and yes, we are the lucky ones.
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Hello everyone, I have been reading extensively since my diagnosis but this is my first post. I found this topic very helpful and thought I'd contribute.
I was diagnosed with what first appeared to be a 1.5 cm IDC/DCIS in my left breast further to the annual screening (mammo and ultrasound). I'm sure something was there the year before, too (and even earlier) but I guess my very dense breasts made it tricky to see. Anyway, as part of my pre-surgical exams I underwent an MRI with contrast which revealed a number of suspicious masses in the same breast. Subsequent biopsies confirmed multi centricity so the plan moved from lumpectomy + radiation to mastectomy. This was very hard for me to accept, especially since the first BS I saw excluded immediate recon and announced 10/15 lymph nodes dissection "to be on the safe side" due to the multicentric nature of the cancer.
I went for a second opinion and it turned out that despite my multiple masses, as they were all in the same area of the breast sentinel node technique would be possible. The second BS (and the PS in the same breast cancer team) also indicated that a NSM would in principle be possible if I wanted (subject to infra- and post-op confirmation that no cancer cells affected the nipple), with TE placement or direct to implant depending on the state of the mastectomy flap during surgery. It was my choice to go for implants as opposed to autologous flap.
I woke up from surgery with TE, my nipple still in place (yay!) and only 1 node removed, which was a great relief. Surgical margins of the smaller mass (0.3 mm) were very very close but during emergency surgery the next day (due to a large hematoma) the surgeon scraped some more tissue and was satisfied this would be enough. I don't feel so confident but hey...
Histology confirmed 4 invasive tubular cancers ranging from 0.8 to 0.3 mm. Only the largest one, which was close to an approx 1 cm area of DCIS, was picked by the annual mammo and ultrasound. I am still in shock at how ineffective regular screenings can be in case of dense breasts. No-one ever mentioned this to me and having no family history I was blissfully unaware.
Anyway, after surgery I was informed that no chemo nor radio would be needed, but I was placed on Femara. The MO stated that I was "lucky in that this type of cancer is more likely not to return than to return" but AI would still be the plan as they cut the risk of recurrence (MO didn't use the term mets) by 50%. I should add that I was perimenopausal back in 2016 - 2017 when a number of doctors insisted I should take HRT due to my age (45 then). My perimenopausal symptoms were mild and I was concerned about the HRT risks but after a number of consultations I finally started with a combined ER and PR pill. 2.5 years later the cancer diagnosis...
I have looked at statistics online and I know I can consider myself "lucky" in that prognosis is very good with tubular. Still, even if Femara is not a walk in the park, cutting even by 0.3% my risk of cancer-related death in 15 years seems worth to me personally, at least as long as side effects remain manageable. Please don't get me wrong, no judgment here whatsoever! It is still early days for me , so far I have noticed joint pains (for which I try to exercise around 1hr per day and take curcumin) hair loss (I've started Hair Band treatment) and vaginal dryness (both BS and MO were ok with me taking estrogen ovules 1x week . I also add another lubricant 2xweek and all is well so far). BS and MO are also ok with Femarelle (soy-derived) to help with menopause symptoms. In fact, it was prescribed by BS number 1. I cannot help but thinking that if I had a more aggressive cancer they would prohibit it.
Sorry for the long post. Just wanted to say that I am immensely grateful for all the wisdom and information shared in these boards. I hope I can reciprocate at least partly by putting my own experience here.
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Hi Mountainlover and everyone,
I was diagnosed with invasive tubular carcinoma back in 2011 (I have posted on here before about it)...had 2 surgeries to remove it...as they didn't get clear margins the first go around....then I had 16 radiation treatments which were optional...but I decided they were good insurance. I did have my ovaries and tubes etc. removed due to my BRCA2+ mutation the following year. I have gained about 50lbs that I attribute to this surgery and frankly wish I had not done it. I think my risk of ovarian cancer was minimal...but hey, the choices we make...who knows if they are the right ones. I was told that taking tamoxifin would reduce my risk of a reoccurrence by 1% so I declined it. I have been fine ever since...knock on wood. I have mentioned on here that I go every 6 months for a check due to the mutation....it's supposed to be a mammogram alternating with a breast MRI with contrast...but I had an allergic reaction to the contrast so now it's a diagnostic untrasound. I actually have one scheduled for today...my fingers, toes and everything else are crossed hoping for good results.
My poor sister was not so lucky, unfortunately she passed away this past March with bone metastasis. She had DCIS back in 1991 I believe...she was 37 years old and then a new primary in the other breast as well as a reoccurrence at the original cancer site (at the same time) at about 60 years old...5 years ago. She opted for a double mastectomy but refused any other treatment as she had such a bad chemo experience when she was 37.
Personally if I am diagnosed with another cancer, I will be throwing the book at it...I won't risk a metastitsis if there is any chance to prevent it reasonably.
I do firmly believe, that if you are going to have a breast cancer, tubular is the one to have!
Hopefully my 9 years of no more cancer is encouraging to others as well as you Mountainlover! Wishing you all the best with your continued recovery and a healthy future!!! It sounds like you are making all the right moves.
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Thank you so much Isee for your post. I was moved by your attention...
I am really sorry for your sister. I can't imagine.
But your experience is indeed very encouraging. I was unable to write here for a few days but I've been keeping my fingers crossed for you, how did the ultrasound go?
All the best to you as well!
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