manish_vkgTeamBCI9 years ago

thanks for sharing such a nice information!!!

made2b2gether in reply to manish_vkg9 years ago

Dear Manish_vkg. Absolutely. We are all in this together and any vital information to share and to help one another is important. Hope it helps. The guidelines keep changing so its best to check with NCCN periodically and also to speak to a qualified breast surgeon / oncologist, and never hesitate to take a 2nd Opinion to qualify the 1st Opinion or to get another Opinion that can give more insight into important treatment decisions. Just like us layman, doctors are also humans, and frankly, none of this is about EGO. Its about care, humanity, and the will to want our loved ones to heal and to live well.

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sumeet_shahAdministrator9 years ago

made2b2gether, this is very useful. I will 'pin' this thread, so others can view it regularly.

NCCN Guidelines is what, most of the world follows. They are based hundreds of large trials.

I saw the links you have placed, and they have explained in a beautiful manner and in a very lucid language.

Each and every lady diagnosed with breast cancer and their care givers, MUST read the above links. The management of cancers will become crystal clear.

made2b2gether9 years ago

sumeet_shah (TeamBCI) - Dear Sumeet, please go ahead and pin it. I thought it may be of good use and with too much information on the internet it is good to have access to good "reliable" information in "one click" / or with easy access. We're done with Chemo and now we're gearing up for surgery. Took the p53 genetic test also just as a precaution (as my wife is 29), and it was advised by a Stanford Doctor whom we met at the Tokyo TNBC Conference back in June. Next month we have pre- surgical scans coming up and then the surgery is set for August 13. . Praying for a good pathology report. Hope you are well Dr. Please stay well and keep up your good work with Team BCI. (Note I say We because my wife and I are a team - We're in this together). Stay well!

imprincess9 years ago

Well said made2btogether. We all are a team. Dr Sumeet is really an angel. Though I too wish and do efforts for this noble cause of bc awareness but sometimes people's response really discourages me. Sometimes people react like I'am there to help them only they even forget I'am also fighting it and alone.

Once I asked Sumeet sir, how you get this much of spirit ,like some people logged in just to ask their queries, and once their problem get solved, they get disappeared, sir replied keep working don't let these things bother you.

And, yes I will keep working till Sumeet sir is with us. He is really an inspiration for all of us.

All the best.

manish_vkgTeamBCI in reply to imprincess9 years ago

rana keep doing....its not so easy for everybody to help other bcu few people dont have courage to take the pain of others on their shoulders...bcu when we give support over this forum so many times i have tears in eyes and no one want to remember this BCS...they just want to erase these memories....but rana u r really a brave girl and we have such a inspiring doctor with us...so no worries definitely one day we won this battle...this is like, god has chosen us to support others that's why god fill us with little more courage and humbleness.

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greenbear9 years ago

Read the links given above.

Is pertuzumab available in India? Why is it not being prescribed here in India?

I had gone through the cost of pertuzumab in US$ and I think it is out of reach for most of us.

kontakTeamBCI9 years ago

Hi made2btogether - its worth reading. Everybody should read so that awareness will be created. Thanks for sharing. Stay in touch with this forum

made2b2gether9 years ago

Dear Kontak, absolutely will stay in touch. My wife is still very much in the thick of things and is still on treatment (she was diagnosed with TNBC Stage 2a in Jan, 2014). She just finished her 12 x taxol and 4 x FEC infusions and now she has scans on August 6 followed by the surgery on August 13. Being 28, when diagnosed, and 29 now, we took the whole panel of genetic tests BRCA 1, 2, MLPA (BART) and p53. So far she has tested positive for no mutations, but the p53 test is still pending. The p53 test is not exactly necessary or does not have any treatment implications (per se), but it is important to note that 1. my wife is under 35 years of age, 2. with a p53 mutation, a patient is at a higher risk of breast cancer, soft tissue sarcoma, and colon cancer, brain tumors and other cancers (so they need increased survellance), and lastly, if one tests positve for the p53 mutation, they need to worry about radiation sensitivity (this is an important point) - so treatment using strong radiation or even frequent PET Scans are not highly recommended for p53 mutation carriers. It's something to discuss with the doctor. It may make one consider a Mastectomy over a Lumpectomy, to avoid radiation, but that also depends on spread to the lymph nodes, and also on what the medical doctor recommends as radiation can also be a critical element of your personal treatment and sometimes it cannot be avoided. One must keep in mind, the only test that one should test for heriditary cancer or if you're diagnosed fairly young is the BRAC 1, 2 Test. These tests were only futher recommended to us and this may be a personal recommendation as my wife is under 35. Now all we can do is pray that the surgery goes smoothly and there is little to no residual. pCR or close to a pCR is very important with TNBC and we hope for the very best. I will be in touch. You all stay well and keep up the good work with BCI. I wish all the ladies on here (this forum) well. As a caretaker (and husband) I urge all husbands, boyfriends, brothers, and fathers to be there for their sisters, mothers, wifes, and friends. The ladies need us to be understanding and supportive. Afterall, we all realzie what an important anchor women are in our lives. Love to all. dw. Hope you all heal and come out of this soon. Good health to all.

kontakTeamBCI9 years ago

Yes you have rightly said - all the family must stand including brothers, father, husband. She has done so much for the family and our life - its now our turn to be with her. Lets give what the best we can in all means so that she should never feel tense and alone

greenbear9 years ago

i don't think the guidelines are being followed by all. like, as per the guidelines i am eligible for sentinel node clearance but my surgeon believes it is best to have good axilliary node clearance. so ultimately we need to go to a good oncologist/ oncosurgeon and trust his/her knowledge and experience to follow what is best for us. however, knowledge is always useful to understand things better.

sumeet_shahAdministrator in reply to greenbear9 years ago

Most Oncologists in Mumbai very much follow these guidelines. You may be eligible for SLN (Sentinel Lymph Node Clearance), but you may not know the situations where it may not be done or it may not be feasible. It's best to discuss with your Oncologist about it.

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shubhac9 years ago

made2b2gether, thanks for the guidelines. At least this is from some authentic source, which even the oncologists would be following.

made2b2gether9 years ago

Dear Shubhac, yes. absolutely. However, its best to read up, have your own questions and to be diligent and an active participant in your own treatment, or perhaps have someone in the family read up, and be active in participating in the treatment to check if it is as per the guidelines. The doctor, afterall went to med school and is the most knowledable source, but since treatments Worldwide are rather standardised, it is good to follow NCCN guidelines, and constantly keep checking on what is the latest and best available for each case. It would be a blessing if such guidelines were translated in multiple Indian languages to help the many women and even those that do not speak fluent English. There is so much to get done. But to get anything done "one has to start with that first positive step". Stay well and take good care.

Deepraj_Das8 years ago

Here I need to inform something and that thing is breast cancer can be genetic and hereditary also. The Root Cause Of Breast Cancer Resides In Gene/s like BRCA1 and BRCA2 genes. Except doing therapies and treating with chemo, we (researchers) need to do the proteomic and genomic study of those gene/s, responsible for cancer as well as breast cancer. Guys if you want to know more, then can go through this goo.gl/My901j