Jul 28, 2016 02:44PM 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?
Posted on: Aug 27, 2010 02:15PM
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 151 - 180 (399 total)
Jul 28, 2016 02:44PM 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 04:07PM Moderators wrote:
wke, we just wanted to say thank you for joining and posting! We're sorry you're having difficulties, but you'll find our community very supportive and helpful.
Please let us know what you and your doctor decide. We hope you're feeling better soon!
Jul 28, 2016 06:00PM 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.
Jul 28, 2016 10:55PM - edited Jul 28, 2016 10:58PM by Brightsocks
WKE- I was not given any form of hormone treatment for the risk of taking the hormones in my case did not work in my favour. I reviewed the pros and cons of the treatment and came to this conclusion with a medical team understanding my condition. I fully support the use of hormones for those who have been prescribed such treatment.
I would go for a second opinion in your case and ask questions about how the hormones, tubular breast cancer and further treatments.
We all have different issues and there is not one correct path to take for BC that is what I have found from just reading all of these great postings.
Jul 29, 2016 09:32AM wke wrote:
Thanks for your responses. The stats I were given by the oncologist were that Tamoxifen would give me a 1% increase in survival and 5% increase against breast cancer. These stats are all study based and the studies are not based on all patients like me who had a small tubular no spread and who elected to have a double Mastectomy so I think my breast cancer risk would be considerably less than the study based stats.
I was not any given any stats however on the increased risks of ovarian cancer, Uterus cancer or blood clots which in my case may very well out weigh the benefits of taking Tamoxifen.
I think I need another opinion. The hospital I went to for all this less me less than impressed. I got 2 post op infections, they put a picc line in my arm to give me antibiotics and it gave me a DVT in my clavicle vein. The cancer actually became the least of my problems!
Jul 30, 2016 03:11PM Brightsocks wrote:
WKE- It would be great if this all were easy and we can know what will happen down the road but that is impossible. There are many stats and odds out there to review on BC. When one has a rare non aggressive BC it is harder to get a clear understanding. I have found some studies but they are limited. I am happy with my choice and feel that I have taken all the necessary treatments offered. I have friends who have had BC and they question why no hormones? They then talk about the stats but they have not read up on Tubular but just all breast cancers in general.
Jul 30, 2016 03:39PM grainne wrote:
brightsocks i agree. I wish some clever post grad would do a comprehensive paper on all stats. We on this thread are the lucky ones. I'm taking tamoxifen and so far it's grand but I've only been on it a month. If it starts causing problems I'm going to stop. I'm exercising for 40 mins a day 6 days a week and it may be that is keeping ses at bay. To be honest, i feel pretty good! There is a thread on this board called 'Let's post our daily exercise' which is very upbeat and cheerful and keeps me motivated. I take a daily low dose aspirin, only drink on special occasions and am trying to cut down on sugar and stress. All of those either don't ( so far ) affect my quality of life or actually enhance it. I can't do any more. I'm six months on 2nd august from diagnosis, a day that i can't think of without horror, and I'm due my first review on tuesday. I don't know if i get a mammogram or not. If everything is ok, I'm going to tell my kids ( i want them all to be together and either one or the other has been away or someone has had exams for the last six months ) . Then I'm going to make a determined effort to stop thinking about it morning, noon and night and stop trawling the internet and scaring myself to death.
Wke, you've had a rotten time and you are due a break. I hope you get a second opinion from someone who will actually answer your quastions. Keep posting and let us know how you get on.
Aug 1, 2016 09:33AM 614 wrote:
Aug 2, 2016 06:09PM grainne wrote:
thanks 614! All went well. I don't get a mammogram until feb but the bs did a physical and found nothing. He was very reassuring and said if there was any bother with the tamoxifen he'd be happy enough if i wasn't on anything as the benefit is marginal. He reiterated how good the prognosis is, which is always good to hear...in fact, i can't hear it enough! I'm trying to steel myself to tell my kids. There are grownup and all at uni but i know once i tell them , even with the good prognosis, nothing will ever be quite the same. I have 2 daughters who really have a right to know for their own health and if i tell them i have to tell my son too. I just cant bear the thought of it.
Aug 10, 2016 01:21PM wke wrote:
I obtained my pathology report and my diagnosis was Tubular left ,1.2cm ,stage 1, 0 nodes, ER+ / PGR+ /HER2-
I went on cancer maths and my cancer mortality was 0.8% and the life expectancy shortens by zero years over 30 year period.
Will definitely be going to get a 2nd opinion and in the meantime I will stay on the half dose 10mg of Tamoxifen which I can tolerate.
Will post after I have had a 2nd opinion.
Regarding telling kids Grainne it's hard. I have girl 18 and boy 16. It has been harder on the boy. It changed him for sure.
Aug 10, 2016 04:40PM grainne wrote:
hi, wke. Totally agree re 2nd opinion. You can't even input the double mx to cancermath so your risk must be minute . Our pathology is v similar but i just had a lumpectomy so a new primary is my biggest risk, i think. I'm still ok on 20mg tamoxifen and iI'll stay on it until I have a reason to stop. have you any side effects on 10mg?
told the kids. I could hardly get my mouth to form the words. It was awful but i think they are ok with it. I was worried they would be angry or hurt that they had been kept in the dark for so long while so much was going on. They were ok with that and i was able to give them the diagnosis and the prognosis in the same few sentences so they were spared the dreadful prolonged anxiety of waiting for path results. My son took it very hard. How has your son changed? Does he talk about it to you or his sister?
Have you fully recovered from all the complications?
Brightsocks, were there any special reasons why the risks of tamoxifen outweighed the benefits for you or did your mo do a straightforward statistical analysis? i hope you don't mind that question. Ihad a v late menopause and really no symptoms so i think my estrogen levels must have been high, which may have contributed to the problem. I sort of welcme the nightsweats, which aren't too bad at all and seem to be lessening, as confirmation that tamoxifen is working.
Aug 17, 2016 12:26AM Brightsocks wrote:
Grainne My team went over all the pros and cons of hormones for my case. They felt there would be no benefit and it was the risk of the side effects of the hormones would not be beneficial. I keep saying in my case for we are all so different that some of us have been prescribed hormones and some not. I know of a case in which a woman just had a lumpectomy and that was it. So the stats of the medication did play a role but my total health/life style was also a factor. So to answer your question I have no other heath issues or even a family history of breast cancer.
Aug 19, 2016 12:41PM wke wrote:
I have recovered from all the complications and I feel very well.
Tamoxifen makes me feel tired nauseous and achey but its tolerable with a 10mg dose.
I am 53 and show no menopausal signs. Clearly Estrogen issues and maybe why the Tamoxifen.
I wake up in the night feeling sweaty but that could be cos it's been a blazing hot summer.
My son took it hard but there was a delayed reaction. Whilst it was all going on and I was in hospital he seemed fine. A few weeks after I got home he suddenly started breaking down. He talks about it a lot with me. We were always close but it has made us closer. Interestingly it has made his relationship with his father worse. If my husband says the slightest thing out of place my son will really go at him.
My daughter was initially in shock and a state of fear but she knows it was caught early and the prognosis is good.
Aug 20, 2016 11:01AM grainne wrote:
thanks, both of you. Wke, the father /son friction is pretty standard, bc or not! Mid teens is just when you would expect it to manifest. The bad news is it can last for years (sorry!).
Aug 20, 2016 07:55PM 614 wrote:
My daughter was 18 and my son was 15 when I was diagnosed. I have had numerous excisional biopsies and core biopsies since I was in my 20's. I told my kids that I had breast cancer but that I was Stage 1 and that I had an excellent prognosis. I told them that I was fine and that I would continue to be fine. They took me at my word and they have been ok with the diagnosis. My daughter was greatly relieved when the genetic testing came back negative. I do have a VUS (Variable of Unknown Significance) possibly for the colon but I didn't mention that since no one knows what the VUS is for. My daughter had a 3cm X 4cm benign fibroadenoma when she was 17 so she had an excisional biopsy when she was a senior in high school. I am lucky that my kids handled my dx well. However, I did not make a big deal out of my bc and I think that went a long way towards helping them to cope.
Good luck to everyone and to your families too.
Aug 30, 2016 04:50PM - edited Aug 30, 2016 04:58PM by debowma
I have only had surgery. I was going to take evista, but couldn't tolerate it. So, we'll see. Sometimes I think I should have had radiation, but tubular cancer rarely recurs so I skipped it. And my doctors felt my cancer was so small that radiation wouldn't really benefit me, nor would hormone therapy. I had surgery June 2nd. My only issue right now is feeling really tired. Not sure what that's about because I only had surgery but I guess I'll ask my doctor in September.
Aug 31, 2016 03:07AM Kaneli wrote:
I am curious as to what your dx was . I assume you had pure tubular, What were the other stats? For example, I had pure tubular, .07 mm size, grade 1, stage 1...no node involvement. I had a lumpectomy, with totally clear margins, Brachytherapy (accelerated partial beast irradiation) and am now taking AIs for 5 years. I wonder if that's overkill for Tubular, with such minimal involvement!
Aug 31, 2016 11:28AM grainne wrote:
hi, debowma and kaneli. my diagnosis was the same as kaneli, except i had a 1.3cm of dcis with 3 or 4 foca of pure tubular, the largest of which was .2mm. I had 15 sessions of radiation with 3 additional boosts as one of the margins was narrow, although all were clear. i was told i had a 4 or 5 % chance of recurrence inthe same breast, cut to 1% by radiation. I'm now on tamoxifen which cuts that risk by a furher 30 % so the benefit is marginal. However, it cuts the risk of a new primary in the contralatrral breast by the same 30% That risk is .5% in each year, as far as i can tell...you have probably already found out how difficult it is to access accurate stats. I'm
not sure if there is some slight confusion between the risk of recurrence and the risk of metastasis which is v v rare with tubular. I couldn't tolerate a.is but find tamoxifen ok. I found the surgery and rads v easy but have struggled greatly with anxiety about recurrence. I'll take what i can to reduce that risk. How are you feeling?
Sep 1, 2016 01:21PM Kaneli wrote:
Hi Grainne and Debowma,
Well, I'm sitting in my living room in Tampa Florida, watching the weather! They just included my county (Pinellas) in the Tropical Storm warning list. Plus, I live on Honeymoon Island, and am surrounded by water! No mandatory or recommended evacuation at this point, but it sure is windy and rainy! I have my flashlights and candles ready, a tub full of water and wine in the fridge! Anyway, yesterday I went for my first left breast diagnostic mammo after lumpectomy in March. After the films were taken, I sat in the room waiting....it seemed like it took forever. At one point, the technician poked her head into the room and looked at me and immediately closed the door. What, did she think I was not there anymore? Was she trying to determine my demeanor before delivering bad news? Of course my anxiety was mounting every moment I waited....Finally she came out and gave me a big smile and said, "Great news...Everything looks great!! Go on home, no need for ultrasound or anything further..." What a relief! Then today I saw that they had sent my results to my portal, so I signed in. Among other things which indicated that it looked normal for post lumpectomy breast, It said " BI-RADS CATEGORY 3: PROBABLY BENIGN - SHORT INTERVAL FOLLOW-UP" Oy Vey! PROBABLY benign? That sounds a little different from what the tech told me when I left yesterday. So....more anxiety. I have an appt with my BS in a couple of weeks so I'll get my list of questions together and try to stay calm....and just enjoy the drama of the incoming storm!
Sep 1, 2016 02:06PM grainne wrote:
how really annoying ! I would suggest it's something your bs might put in context after a lumpectomy. My bs told me the first mammogram throws up many changes after surgery. I dont get one for another 5 months, although we were diagnosed at the same time. I can't believe you would have been given such a chirpy reassuring message if there had been any genuine worry. Maybe 3 is the only catagory there is to describe post surgery changes. It is so horrible having to worry. Will we ever be able to leave this behind?
On the plus side, you do have wine!
Sep 2, 2016 06:16PM grainne wrote:
kaneli, your storm made big news over here. I hope you got through it ok,
Sep 2, 2016 06:37PM - edited Sep 2, 2016 06:39PM by ChiSandy
BIRADS 3, “probably benign," means “there's something we see, but it bears all the hallmarks of being benign, so let's follow it up down the road to make sure." BIRADS 2, “benign," is usually the designation given after a biopsy confirms it's not malignant. BIRADS 1 means “everything's normal;" BIRADS 0 means “something's amiss, but we can't tell what it may be without further imaging." BIRADS 4, means “after doing diagnostic imaging [because of a reading of BIRADS 0] it's suspicious for malignancy, i.e., there's a chance it might be malignant, so a biopsy is necessary." BIRADS 5 means “highly suspicious for malignancy [very likely to be malignant]." BIRADS 6 is “we've confirmed by prior diagnosis [&/or via past treatment] that it's malignant, but we need to biopsy to see what kind it is or whether it's a recurrence."
BIRADS 3 is a good place to be, especially when you consider that 80% of even BIRADS 4 (“suspicious for malignancy”) turn out to be benign.
Sep 3, 2016 08:39AM Kaneli wrote:
Thanks ChiSandy! That explanation puts it in a better perspective for me. I guess it's a good result! Grainne, yes the storm was a bigger deal that we expected around here. Even though we did not get a full frontal assault from Hermine, I guess the outside winds on the east side of the storm are the stronger ones to contend with. Today things seem to be settling back into a normal pattern, although it does look like we have some more rain coming in soon. Ah the joys of Florida in Aug/Sept!
Sep 3, 2016 10:43AM Briley73 wrote:
hi everyone... I have been reading this forum now since I was diagnosed in mid July and it has provided me with the best information! I was diagnosed with tc 7mm grade 1. I am 52. I'm still deciding on treatment. I have gone for a second and third opinion... Just wondering those of u who have had sentinel nodes removed what are the side effects u r experiencing? Right now I'm stuck on whether to do this.. From what I read tc less than 1cm tend to not involve the nodes.. It's routinely performed as part of the "gold standard of care" that I keep hearing about!
Sep 3, 2016 11:14AM grainne wrote:
hi and welcome. I had 2 sentinel and i palpable nodes removed in early feb. I had no side effects whatsoever and was very glad of the reassurance that they were clear. Can i ask if you have had a lumpectomy already and are considering a separate snb? If not, how was your tc diagnosed? and how did you manage to get a second and third opinion over here!! Are you trying to get hold of statistics to try and inform youf decisions? Tc is so rare it is very difficult. Your diagnosis is very recent...how are you feeling?
Sep 3, 2016 12:13PM Briley73 wrote:
hi grainne thanx for your response! It was diagnosed thru ultrasound and not the mammo! No I haven't had a lumpectomy yet but I am considering a snb if the tumor turns out to be larger... The BS told me the other day that sometimes they turn out to be 1-1.5 cm with some women... The first BS suggested I go for a 2nd opinion since I am uncomfortable with the treatment he is proposing.. But it was something I was automatically considering anyway.. Well the BS I was interested to see was on hols so they sent me to another BS at another hospital but that was a disaster really horrible exp the way I was spoken to etc.. So I finally got an apt (I had to push for it)with the doc I wanted but to be honest she was only slightly a little better and u don't really get a second opinion anyway in Ireland cos they are all from the same conventional box! It's not common here and the reaction I got made that abundantly clear!
Sep 3, 2016 12:16PM isee wrote:
I was diagnosed with Tubular Carcinoma at 52 as well, 5.5 years ago. I had a lumpectomy, but they didn't get it all, so they then did a partial masectomy (they took a bit more) a few weeks later. My surgeon was excellent and my cancer was on the side, so you can hardly tell. It's just a bit smaller. I had the sentinal node and the 2 closest to it removed to be checked. They were clear. I did have some cording for a few months after going down the inside of my arm, but it eventually went away. I have had no other problems with it.You can read about it here if you like... http://www.breastcancer.org/treatment/side_effects... I found the injection around the nipple of the tracing agent before the biopsy to be the most painful part of my entire ordeal. So if they do this to you, be prepared for it to hurt. I screamed bloody murder. Not sure if others have experienced that....
I decided to have radiation, but refused Tamoxifen due to the potential side effects and the fact that it would have given me only something like a 1% reduction in a new or reoccuring cancer. It sounds like you have had a biopsy, you know how large the cancerous area is...I had the sentinal node biopsy at the same time as my partial masectomy (2nd surgery) probably because they were sure it was cancer at that point. As you probably know, tubular is not generally a lump, but rather a spiderweb structure branching outwards. It is interesting that they know how large yours is already just from a biopsy (unless I'm misunderstanding you). Given this structure, I felt it was important to not only make sure they took all the cancer out during surgery, but also to make sure it hadn't spread...consequently the node biopsy. I also had radiation as insurance. Although Tubular Carcinoma has a great prognosis, I figure cancer is cancer and I wanted to make sure it was gone! Due to the fact that my family has a huge history with breast cancer, they tested me for the BRCA mutations, and lucky me, I am BRCA2+. I didn't find this out until a year after my diagnosis, so I'm glad that I opted for the treatment that I had. If my doctors had known my status at the time of treatment, I suspect they would have also done chemo...so I'm happy I dodged that bullet. Also due to the BRCA2 mutation I had a bilateral salpingo-oophorectomy...removal of tubes, ovaries and pretty much everything else down there. I was told this was a must surgery for me due to the risk of ovarian cancer. It's really too bad I agreed, as new research seems to show that my risk with BRCA2 mutation for ovarian cancer with no familial history is minimal. Since the surgery, I have gained 30lbs., that I seem unable to lose, and am really missing the little bit of estrogen and who knows what else that these organs produced even though I was post menopausal at the time. If I could do it over again, I wouldn't. Due to the mutation I receive high risk survellance and have a mammogram every January and an ultrasound in September. The ultrasound should have been an MRI, but I developed an allergy to the gadolinium so I can't have them anymore. Anyway, good luck with your treatment. I know this is way more info than you asked for, but what the hell....lol
Sep 3, 2016 12:39PM grainne wrote:
briley, sorry your experience has been so unpleasent, even apart from the diagnosis. To be honest, i think i would have the snb at the same time as the lumpectomy. The c may turn out a little larger than it appears and you would not want to face separate surgery later. Unlike isee, the injection of the tracing agent didn't really hurt much at all. They were not able to diagnose my tc from the biopsy :they could only tell me it was dcis/idc. WHat treatment is proposed that you don't like?
What part of ireland are you in? I'm in co. Antrim
isee, i see you were diagnosed as grade 2. I thought all tcs were grade 1?
Sep 3, 2016 02:29PM Kaneli wrote:
I had the SNB at the same time as my lumpectomy in March. I was diagnosed with tubular at my breast biopsy and utrasound, and they estimated it to be at about .5cm. After The lumpectomy, they said it was .7cm.. so a little bigger. I only had the sentinal node biopsied, which was negative, and it has caused me no distress, or side effects. The incision has healed really well. Like Grainne, I experienced no pain from the injections of tracing agent beforehand. They did use lidocaine on those though, and I think that's what the difference was. I have heard that it is really painful without the lidocaine laced injections. I am really happy they did the SNB on me. The peace of mind is priceless.
Grainne, I live in the USA, but my father's family came to the States (Buffalo, NY) from Antrim in the early 1900s. My father's name was McDonnell. I am sure there are a million McDonnells in Antrim! I have visited Dublin and Shannon and outlying areas, but have never been to Antrim. Small world though, huh?
Sep 4, 2016 07:29AM grainne wrote:
kaneli, that is so interesting! Do you know the village or townland your father's family came from? Mcdonnell is a very popular name with a long history in the glens of antrim, which is a beautiful area along the north coast. Some of my husband's ancestors left from there around the 1900s and went to brooklyn. You will almost certainly have relatives over here.
I've been following your posts as we were diagnosed at the same time,although we were given different stats on recurrence and survival. I'm not brave enough to take any risks so i take tamoxifen and try to welcome the hot flashes, which are very tolerable , as proof the medication is working. How are you doing?