tubular carcinoma
Comments
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Has anyone had their radiation tats removed?
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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?
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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.
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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.0 -
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....
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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!!!
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I think current research shows the Oncotype test is not a good predictive test for tubular anyway the way it is for regular IDC. Hope this makes you feel better.
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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!
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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.
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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?
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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.
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Dear Grainne:
I totally understand your worry. I was diagnosed with bifocal pleomorphic LCIS, pleomorphic ILC, and Invasive Tubular Carcinoma plus numerous atypias (atypias are benign but they raise one's risk for bc). Six months after my double lx and radiation, I had another biopsy but thankfully, that was benign. Six months after that, I had another biopsy and ALH was found. I am always worried. I can't help it. Not only that, but I have extremely dense breasts so I feel lumps everywhere. I know that these lumps are my "new normal" so I don't need to worry about them. It is still terrifying. I did not have as many tumors as you had but I certainly understand your anxiety levels. Also, prior to my bc dx, I had 2 excisional biopsies and 1 double excisional biopsy, as well as 6 other core needle biopsies. I may have even had another biopsy that I forgot to count. lol. (That doesn't include my double lx for my bc surgery, my medically necessary breast reduction and breast lift at the time of my bc surgery, my sentinal lymph node surgery, and the 2 biopsies that I had after my bc dx.) I sometimes feel that I am a hypochondriac and that my worry is crazy. However, I have been through a lot. Thanks for listening. I hope that you feel better.
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Dear KatharineNicole:
I couldn't take tamoxifen either and I was not in menopause when I was diagnosed. I took the zoladex injections to shut down my ovaries so that I would be able to take an AI. I didn't want to take the extra medication so I had my ovaries removed. It was the best thing that I ever did. No worries now about ovarian cancer. I don't have side effects from Anastrazole so I am really lucky. I have been taking Anastrazole for exactly 2 years this month. Good luck.0 -
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.
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Dear Grainne:
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.
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Just thought I would share this paper that I found on Tubular BC.
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Thanks
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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.
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Dear Kaneli:
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.
Happy Holidays.
614
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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.
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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
year. Xxx
Grainne
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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.0 -
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.
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Good for you Brightsocks!
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614- How are you doing?
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Dear Brightsocks:
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.
Sincerely,
614
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hi, brightsocks and 614 and anyone else browsing this thread. It's good to hear from you. 614, I'm amazed you can pack 10,000 steps into such a long day. That sounds a fantastic achievement. Are you planning to cut your working hours down soon or is that just the way it's going to be indefinately? I took the decision to wind up my small legal practice. It was tremendously stressful for about 3 months and part of the deal was that i went to the firm that bought us out as a consultant for a year. I'm now working slightly longer hours than i did previously but i have done 2 1/2 months and I'm counting down the months until i can just walk away. I'm 58 and I've been doing the same stressful job for over 35 years. I just don't want to do it any more.
i wish i had got to the point you both have:I'm afraid bc is still my first and everpresent thought. Physically I'm fine. I have scarcely any scarring, full flexibility and I'm even starting to run a bit. Mentally, i feel like my life is ruined. I have lost the confidence i had that i would grow old. Planning for the future seems at best risky and at worst absurd. My sisters and friends think I've just left it behind and don't mention it to me any more. Sometimes i almost gasp out loud with the sheer horror of it, which i know seems absurd. I wonder if it has been so hard to absorb because it was just such a shock: i felt completely healthy and simply could hardly believe i actually had cancer.
I have my first mammogram on tuesday after diagnosis, almost exactly a year ago. I am very nervous. My heart fails me at the thought of sitting waiting for the result. Like you, i know how unbelievably lucky i have been with the pathology, and how grateful i should be and I am, indeed, very grateful.
sorry this is such a self indulgent rant but it is a relief to put it into words.
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Hi 614,
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.
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Dear Brightsocks:
THANKS!!
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.
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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.
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