Topic: tubular carcinoma

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 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 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 03:39PM 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 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 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 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 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 31, 2016 03:07AM Kaneli wrote:

Hi Debowma,

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!

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 2, 2016 06:16PM grainne wrote:

kaneli, your storm made big news over here. I hope you got through it ok,

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 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 12:16PM isee wrote:

Hi Briley,

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 02:29PM Kaneli wrote:

Dear Briley,

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?