tubular carcinoma
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Hi CAM8: The surgery went well & thanks for asking!! I'm sore & may have a small hematoma that doctor said not to worry about at this point; will see her for follow-up Thursday. Still awaiting pathology report--should be in today!! Called to follow up but haven't heard back yet.
I'm glad you're doing okay & your symptoms are relatively mild.not too bad at this point.
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Benaya did you get the pathology report?
CAM8 you are almost done!!!!!
I am doing very well 😊
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Got pathology---clear margins!! Thx. for asking, Valentina & glad to hear you're doing well!!.
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Benaya great!! How do you feel?
B0 -
great news!
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I'm doing well & thanks for checking in!! Other than this seroma (not a hematoma), which only bothers me in certain positions, I feel good. Doctor said there's nothing to do but wait it out. Since I've opted out of other therapies, I'm fortunate not to have a lot of side-effects. Also had a vascular mass on the right that turned out benign (angiolipoma) which is great but in hindsight, I think we should have waited and watched, but since it's a rare occurrence they wanted to eliminate possibility of malignancy.
BTW, for those interested in doing future research on tubular ICD, let me know & I'll post cites to articles.
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So happy things are going well Benaya! I also had a Seratoma right below where they took the lymph nodes out. I was told to not wear any restrictive athletic bras that would impede the drainage of fluids. As soon as I did that it slowly went away within five days. Hope you are at 100% soon
My last rad is tomorrow! Glad it’s almost over!
CAM
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Thanks for the advice, CAM!! I wasn't told anything but to wait it out, but I'll try not wearing anything tight. Having some support, though, has helped with soreness. I've read on this site that it can take months!!
Glad you're just about done with the radiation & faring well.
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I wore a cami that encompassed the Seratoma and it applied pressure to it. That sped up the recovery. Good luck!
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Benaya- Glad to read anything you can find out tubular.
Cam8- Once I had the okay from my medical team I worked on scar management and flexibility. I went to an athletic therapist who did a technique called Granston. My scar is just a faint line and I have increased my flexibility.
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Hi Brightsocks.
I'll try to get the cites together for you in the next few days.
Also, regarding my seroma, doctor now says I don't have one---just typical swelling which will go down soon, which is great news.
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Hi Benaya,
Sounds great. I do like to read more and now that I have finished all treatments there is less of a panic to learn everything all at once. I found that a hard part of the whole process not knowing enough about what even to ask about. I am now over two years from the first phone call and treatment.
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Hi Brightsocks: Yes, I agree that not knowing what questions to ask is difficult, and it's also difficult to have to research on our own, which we really have to do or in the alternative, get several different opinions from doctors. I'm finding that because tubular is so rare, some doctors don't know that much about it and don't treat it as a subtype with unique characteristics
Finally got to this article list.
Pure & Mixed Tubular Carcinoma: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC26267...
Textbook of Uncommon Cancer: http://onlinelibrary.wiley.com/doi/10.1002/9781119...;
https://mayoclinic.pure.elsevier.com/en/publicatio...
https://www.ncbi.nlm.nih.gov/pubmed/25567000
https://www.ncbi.nlm.nih.gov/pubmed/19917872
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Benaya-Thank you for these interesting reading. I wonder in 20 years will they treat this form of BC differently?
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I brought the summary from the Textbook on Uncommon Cancers into my doctors. It clearly states that tubular can be treated less aggressively. My surgeon and oncologist felt okay with my decision to bypass sentinel node biopsy & radiation---that it could be safely bypassed due to the tubular subtype. They would've liked me to at least try estrogen blocking drugs but I chose not to. So, they definitely viewed tubular differently---though I'm not sure how they would've approached it (prior to me) with a patient who wasn't questioning the issue of over-treatment, had research, etc. I think they'll think twice with future patients. I also spoke with a radiologist earlier on who felt similarly--that tubular just doesn't do much--even when it spreads. Maybe they'll do some more studies on it at some point in the future.
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Thank you for all the great info! How are you feeling Benaya? I’m feeling good. Radiation side affects almost gone! Hope all is well with everyone!
CA
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Benaya thank you for the info. There is only one thing I worry about TC, we know it is not aggressive and has great prognosis but I also read it is associated with breast cancer of higher grade in the other breast...this worries me a lot. That is why I am taking Tamoxifen...did your doctors tell you anything about this?
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Hi Ladies! While I agree that tubular carcinoma is very nonaggressive, my doctor said that if there is a reoccurrence, it will not necessarily be tubular carcinoma. When cancer cells multiply, they are not always the same type of cancer cells. That’s what convinced me to undergo radiation therapy. It was the right decision for me but everyone has to do what they are comfortable with.
CAM
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Val and cam, I agree. The risk of contalateral bc is low but may be slightly higher for tubular and if it occurs will not necessarily be as favorable. I took the view that, having been told by my bs that the chance of mets was tiny and the chance of recurrence in the radiated breast is now less than it was before diagnosis, my only real risk, albeit v small, is in the other breast. I tried ais for 10 weeks and was utterly miserable. I would not compromise my quality of life so significantly for such a small risk but I tried tamoxifen and found that for me the side effects are minimal and I'm happy to take it. I like to feel I'm proactive. Don't forget exercise...it is supposed to reduce recurgency by up to 40%... It also helps reduce side effects. I had whole breast radiation as I had 2 tiny satellite tumours. I feel I have had the optimum treatment for me and I have no regrets.
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Val and cam, I agree. The risk of contalateral bc is low but may be slightly higher for tubular and if it occurs will not necessarily be as favorable. I took the view that, having been told by my bs that the chance of mets was tiny and the chance of recurrence in the radiated breast is now less than it was before diagnosis, my only real risk, albeit v small, is in the other breast. I tried ais for 10 weeks and was utterly miserable. I would not compromise my quality of life so significantly for such a small risk but I tried tamoxifen and found that for me the side effects are minimal and I'm happy to take it. I like to feel I'm proactive. Don't forget exercise...it is supposed to reduce recurgency by up to 40%... It also helps reduce side effects. I had whole breast radiation as I had 2 tiny satellite tumours. I feel I have had the optimum treatment for me and I have no regrets.
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Anyone use dried-ginger or/and turmeric as an additional treatment?
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Year three and still holding my breath as I walk in for my yearly mammogram. I still feel the stress in the little room waiting for the "all clear you can get dressed now and go". My eyes fill with tears as I leave the office walking down the hall in the mall. Thinking what stories we all have to tell and what we all have inside that keeps us strong and moving along. "Large tea" I say smiling ordering my drink.
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what about a large gin and tonic???? Good to hear all is well!
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what a beautiful post. Thank you. Hope everyone is well. By the way, I would opt for the gin and tonic as well!!!!
Cam
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Brightsocks- congratulations. That’s great news. I am new to this thread and know nothing about my tubular carcinoma. I was just focused on IDC. I’ll need to do more research
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Thank you all for posting your experience with tubular cancer in this thread. I am one of the few diagnosed recently and I feel good about the team of doctors i was referred to. My stats reflect standard text book TC and I decided to go with bilateral mastectomy.Diagnosed at 48 on routine annual mammogram, non‐palpable lesion
Dx 11/30/2018, DCIS, Tubular, Left, 1 cm, ER+/PR+, HER2-
Surgery 1/23/2019 Nipple spare, Left Sentinel Lymph node removed, negative
Surgery 2/1/2019 DMX
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Hello, Applejuice, and welcome. We have one of the very rare cancers which means this thread is often dormant. I'm sure you know by now that the prognosis for TC is generally excellent and all your stats would support that. I, too, was diagnosed at a mammogram, which came as a complete and utter shock. I felt quite shell shocked for months, although physically I was grand.
I see you are having a DMX tomorrow. How are you feeling?
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I fell good, pretty much all normal on my side.
I cant wait to get over it in a way, and hope that life will go back to normal, but on the other way i am a bit anxious to see the pathology of the tissue and make sure there is nothing else hiding out of sight!
I am reading as much as i can and i understand that each and every case is different. As you know, the more we learn the more questions we have and the more we expose our mind to think of the possibilities out there. My ER+ PR+ are very high > 99 and I am not sure how that will affect the future for me. For now, i choose just to inform myself and take one step at a time. Once this step is completed will discuss next steps with the MO and decide what's best.
How is the hormonal therapy going on for you?
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You sound as if you have your head in a good place...everything you say is eminently sensible. You are right in thinking life will get back to normal, sooner than you think. The diagnosis can sometimes prompt some of us to take decisions that we would otherwise have kept putting off which actually mean life is better...that was true in my case. The worst thing is the anxiety about recurrence but that lessens as time passes. I totally understand about waiting for the pathology report..my phone sat on my desk like a hand grenade when I was waiting for my results.
I tried to take aromatose inhibitors but couldn't..I had horrible night seats, joint pain and, worst of all, depression. I switched to tamoxifen which i have been on for 2 1/2 years with minimal side effects.
I highly recommend exercise. It helps with side effects, reduces recurrence and really improves mood. It doesn't have to be drastic...brisk walking is grand.
Is your operation over now? I hope everything went well. Let us know how you are. X
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Surgery went well and i am back home.I hope the recovery will be easy and boring, not terrible pain right now but i understand that might change. I plan to enjoy all the itme off and binge watch netflix for a few days.
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