Posted on: Aug 27, 2010 01:15PM
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 211 - 240 (414 total)
Sep 29, 2016 11:00AM grainne wrote:
hi brightsocks. That's great about your mammogram and being discharged: it sounds as if you are in a good place. My radition tats were tiny dots, scarcely visible and don't bother me at all. What have you got?
Sep 29, 2016 12:18PM Brightsocks wrote:
I have three small black tats that I should have had the tape for but at the time I really was not thinking. It was when I had my CT scan done the guy the injects in the black pigment.
Oct 5, 2016 10:32PM 614 wrote:
Hello all: I have been working so many hours and I have been going through so much emotional stuff, so I have not had time to login. I had a breast reduction and a breast lift and I did not have any drains. Thank God. I was really worried about drains. I felt fine almost immediately. I was off of work because it was summer and I work in a high school. However, I think that I would have been able to return to work after a week. I would not have been able to exercise though for a while. I didn't try to exercise but it took a while for the incisions to heal. I totally understand wanting to be symmetrical. I was lucky because my breast reduction and breast lift was done at the time of my double lumpectomy surgery. I wish all of you the best.
Oct 8, 2016 03:28PM Kaneli wrote:
614, Thank you for sharing that! I am still undecided on whether to do the breast reduction the PS recommended. It seems a lot more involved than I expected. She did tell me I would have a drain, or maybe drains. No lifting or exercise for 6 weeks. Plus, she said that it takes about a year to see what the radiated breast will finally look like, so she will try to make them similar, but we won't really know how the radiated breast will ultimately look like for another 6 months. So she'll reduce my other breast and hope to match it to the LX breast, but who knows? Aside from that, my insurance company has not yet approved it. They want more info, and evidence that it is medically necessary. Well, is it really medically necessary? I don't suppose so, but I thought that, by law, insurance companies have to pay for reconstruction after a lumpectomy, or mastectomy. But maybe not on the unaffected breast. I'll have to do more research on that. And I wonder if I really want to put myself through it all. Everything is a risk, and does the benefit outweigh the risk? I just don't know....
Oct 13, 2016 12:08PM KatharineNicole wrote:
I am so glad too see all of your posts. I have a 1cm pure tubular. I had a lumpectomy and 15 rads +1 booster. I will not take tamoxifen due to risks. But my oncologist has given me an injection to shut down my ovaries so I can take an AI for 5 years. That has its own associated risks. I am right at 1 cm and am wondering if this is too much or added safety. He said if I'm too miserable on the AI, I can just stop and it won't be that big of a deal. But he thinks it is worth trying for the added benefit. I'm curious what others in my situation would do. Additionally, my Oncotype Dx was a 14. I think this has a lot to do with why he wants me to try the AI. However, from what I have read, the current thinking is the Oncotype is not a good test for tubular, the way it is for regular IDC. In fact, a study tracked 1,100 people with tubular and the median Oncotype was 14.9. I think this must likely DOES prove its not a valid test for tubular. I appreciate others thoughts. Thank you!!!
Oct 13, 2016 04:33PM Kaneli wrote:
KatherineNicole. I wonder the same thing about taking the AIs. I am on letrozole now and it's not bad, although it may be causing me heartburn.I had a rough time with anastrozole as far as moodiness and fogginess. My tubular tumor was .07 cm, so fairly small, but my ER+ count was 99%, (even though I have had a total hysterectomy) so I guess that's why my MO advises me to try to take it for 5 years. Maybe all tubular carcinomas are ER+....I have no idea. My MO did say that it was not the end of the world if I stop taking it, but he still recommends it....so I guess it's worth a try. I would hate to have regrets later. Anyway, good luck with your decision!
Oct 21, 2016 08:20PM Brightsocks wrote:
After having tubular BC just wondering what sort of after treatment care has everyone experienced?
My care is to see my family doctor every 6 months and a yearly mammogram.
Athletic therapy for shoulder and cupping as well.
Oct 22, 2016 05:49PM grainne wrote:
hi, brightsocks. I get a yearly mammogram and another meeting in 6 mths with my r.o. i think that is just to check everything is going ok with the meds because we don't have
M.o.s over here. I am not due my first mammo until feb. Are you due your first soon?
kaneli, hope you are doing ok. Any decision on the surgery?
Oct 31, 2016 05:52PM grainne wrote:
hi, everyone. I'm suddenly fretting a bit about being 'multifocal'. I can't really see anyone else on these boards who has a similar diagnosis, especially in this tubular thread. You all seem just to have one tumour. I have 5 or 6 tiny ones, 3 or 4 within a small area of dcis and 2 more just outside. Is there anyone out there with a similar diagnosis? Does it mean the prognosis is worse? Why should these all form separately at the same time? If the 2 satellite tumours weren't seen on the mammogram, how can i be sure that there aren't any more lurking in there and if the next mammogram will be able to exclude them?
I was doing fine but i have suddenly been hit by a wave of anxiety.
Nov 1, 2016 07:33PM - edited Nov 1, 2016 07:36PM by 614Dear Grainne:
Nov 1, 2016 07:41PM 614 wrote:Dear KatharineNicole:
Nov 3, 2016 06:35PM grainne wrote:
hi 614. You have been through the mill! So far, i know I've had a really easy time. Neither the surgery nor the radiation were any bother at all and, after a horrible 10 weeks on anastrazole i am managing very well on tamoxifen. Mostly i feel ok but then i read or hear something that makes me revisit my prognosis and i start fretting about it and googling and i can't get it out of my head. Truly, for me, the mental and emotional impact has been far worse than the physical. I always considered myself pretty robust mentally. I don't think that anymore.
Nov 4, 2016 06:44PM 614 wrote:
I agree with how you feel. This is why many people who have been diagnosed with bc also feel that they have PTSD. Although I have always been a worrier, I feel that I am really fortunate. I was diagnosed at stage 1A so I am super lucky. I also have amazing doctors. Good luck.
Nov 21, 2016 06:35PM Brightsocks wrote:
Just thought I would share this paper that I found on Tubular BC.
Nov 29, 2016 10:10PM 614 wrote:
Dec 6, 2016 09:43PM Kaneli wrote:
Hi Al! I hope you are doing well....I haven't been on in awhile, for a number of reasons....all good! I decided not to do reconstruction on my unaffected breast. Insurance said they would cover it, but it seemed to be a bigger surgery than I expected. I don't know....my breasts were not that hugely different from each other, and when I considered the possible results, I just felt that it was not worth the risk. I may regret it one day, but I am at peace with my decision right now.
My daughter called me to tell me that the mother of one of her best friends was just diagnosed with BC. My daughter asked that I reach out to her, which I will. It sounds like it might be tubular, or another of the "good" ones. She was told that if you have to get a cancer dx, this was the one that you wanted to have. That's the same thing they told me about tubular. I hope I can give her encouragement. I have to admit....it has been an awful and frightening journey. Very scary. I am not even a year out (Next March) and some of this process has been painful and frightening and confusing. At the same time, I have to say that I am not "living it" every day. I know it's there, I know I am different now, but I feel like things are under control. I'm taking Lestrosole now, which has some mild SEs, but so far manageable. So I hope I can help her, at least as far as understanding what you go through during your early dx. We all have benefited by talking with or connecting with others in the same boat. You can be sure, I will get her on BCO. The information can be invaluable, and it makes a big difference in making one not feel so alone.
Dec 13, 2016 10:01PM 614 wrote:
I'm glad that you are doing well. Don't second guess yourself. Your decision is the right one for you. You can always have reconstruction in the future if you want. No need now. Good luck to the mother of your daughter's friend. Yes, definitely reach out to her and get her onto this website. It helps so many people. I'm so glad that I found this site.
Dec 19, 2016 01:50PM Kaneli wrote:
Last night I had a dream. An unfamiliar nurse came out into the waiting room of wherever I was in the dream, and in a very matter of fact tone, told me that my BC had come back... that it was in the same breast and that it had grown quite a bit. She was not really sympathetic, and was just like a character bearing news to me., which happened to be bad. What a terrible dream. I woke up just crying and crying. The strange thing is, I can go days without even thinking about breast cancer, with the little exception of when I take my daily Letrosole., and when I go braless and notice the asymmetry of my breasts. ;( I really do think though that, for the most part, I have managed to "move on," so to speak and that my BC does not define me. But that dream was a reminder that the fear and the uncertainty still is very real, and probably will be for a long time....maybe forever.
Dec 24, 2016 07:53AM grainne wrote:
kaneli, how bleak and horrible for you. Good for you, getting your head round it so well.
A very happy Christmas to everyone on this thread and a peaceful and healthy new
Jan 11, 2017 09:33PM 614 wrote:
Happy New Year to all! I am sorry that you had such a horrible dream. BC is terrifying. Many people have PTSD after a cancer diagnosis. Good luck.
Jan 14, 2017 04:59PM Brightsocks wrote:
Just checking in to see how everyone is doing. I am now just one year past my lumpectomy operation and all is going well. I have been doing Cupping and Graston with an Alethic therapist on my side of the operation and that seems to help. I have been working on increasing the flexibility of my arm and shoulder. I have been doing Graston over the scar and it is fading away. BC will always be with me but it is no longer the first thing on my mind as it was a year prior. I still have questions pop into my head when I get a twitch or random pain. I am not sure if that part of BC will ever leave me.
Jan 16, 2017 09:26PM 614 wrote:
Good for you Brightsocks!
Jan 19, 2017 08:27PM 614 wrote:
Thanks for asking. I have been working 14 hour days at work, which includes my 2 & 1/2 hour commute to/from work. It is stressful and exhausting. I work in a high school so most of these hours are after school and unpaid. I don't have time for anything else. Luckily, I love my job.
I am trying to walk 10,000 steps per day so that is my goal. Unfortunately, I have gained weight since my breast cancer diagnosis, treatment, and ovary removal. Being forced into menopause and taking AI's have made me constantly hungry and overweight. It sucks. I am proud of myself for walking every day but I need to step up my exercising and cut back on eating (plus I must eat healthier).
I really don't have much time any more to log on to this website. I really miss this website.
I feel well and I know that I am fine, but I am always doing breast self exams now because I am a worrier. I know, intellectually, that I should not be worried about a recurrence but I can't help it. At least, I am not "consumed: by breast cancer now and it is no longer all that I think about. I really am very lucky. I'm glad that you are no longer "consumed" either.
By the way, what is,"Cupping and Graston with an Alethic therapist"?
Have a great night.
Jan 20, 2017 05:36PM - edited Jan 21, 2017 06:54PM by grainne
Jan 23, 2017 12:03AM Brightsocks wrote:
Here is some info on what cupping is http://www.webmd.com/balance/guide/cupping-therapy...
I also have used cupping on a calf pull and it really helped. Where I go for treatment they use a plastic cup and a handheld suction pump.
Here is some info on graston. http://www.grastontechnique.com/patients-info
I just picked a page to show some pictures. This also seems to be working for me. I know there is an issue with massage treatments and bc so I talked to my nurse advisor first and for my case it seems to be fine. I can't recommend this for all.
Mar 17, 2017 01:09PM 614 wrote:
I have been working so many hours and I have not had a chance to login to this website. I really appreciate the information (even if I am thanking you months after you posted.)
I go for regular massages because my oncologist said that this is fine.
I hope that you are doing well.
Mar 20, 2017 02:32PM Brightsocks wrote:
614- Tomorrow will be must last meeting and goodbye to my surgeon. I am not sure if anyone else used vitamin E on their scars but it really helped me. My scar is fading into my skin and is now less noticeable as time rolls along. I am glad to have one less member on my health care team. I will now be under the care y doctor of my family doctor with trip in every 6 months for 2 years then once a year if I have an issue. I have yet to get the call for the removal of my tattoo spots which I really want removed. I should have asked for the tape spots that is my one regret.