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LouiseTurner's avatar
LouiseTurner
In Memoriam
13 years ago

Research junkies

Hi all, if anyone is like me and can't stop researching for quality info on your breast cancer since your diagnosis, then you might like this site. http://www.breastcanceranswers.com/ It is current and varied in its information. Basically you can view or ask questions and breast surgeons, oncologists and others make video responses based on their experiences and current medical research and standard of care. I have found researching everything on my condition, includes reading personal experiences on the BCNA forum, very useful to ...... 1- inform me of up to date information to better be informed for doctor appointments ( they can be tough & intimidating) 2- to fill in the waiting which is agony. I am seeing the oncologist and surgeon tomorrow (post op for re-excision after initial lumpectomy of 2x grade 2 IDC revealed previously undiagnosed 7cm DCIS, no clear margin). I will finally have a treatment plan and hopefully keep my breasts. Cheers, Louie

6 Replies

  • Hi Mitch, After taking the 2 tumors and the surrounding mass, the pathology revealed high grade DCIS previously undiagnosed. So she went back in a few weeks later to have another go, taking another cm. She was confident of course that she'd get it all. But she is really making experienced guesses, as this DCIS is molecular so not visible, and not coming up in scans. I was not keen to have third excision blind, and of course she will not leave it, so she suggested an MRI. Of course this is also delaying start of chemo. The tissue is towards the surface, so should be easy enough. Hopefully the MRI will either show more cancer and we will head toward mast, or it will show no additional leasions and guide her to getting a clear shot third time. She has done a sensational job so far, and my breast looks great, so it will be a shame to lose the lot. But nothing in this bc world is strait forward. Your arm sounds painful, what a crappy side effect for you. You just can't escape it. L:)
  • Hi Janet I will look at those books online....my hubby thought ths was a great time to get an iPad, so easy to go to the online store. This iPad makes it so easy, anywhere, anytime. My appointments did not really go as planned. The margins were again not clear, so I have had an MRI today to help decide my next move. The onc does not really want to be delayed to much for surgery again and again. Anyway, we now have the weekend to worry and hopefully an answer early next week. Cheers L:)
  • I've been reading a lot about breast cancer too since my diagnosis - treatments, risk factors, minimising chances of re-occurence. I agree it's good to be as well informed as possible when talking to doctors but I think it also gives you some sense of control over the situation.  With cancer it's like some insidious evil thing has invaded your body. I feel that by learning as much about it as I can and taking some steps to minimise the chances of it coming back that I am taking back some control. Knowledge is power I reckon.

    Some books I've read that you might find interesting are:

    The Whole Food Guide for Breast Cancer Survivors: A Nutritional approach to Preventing Recurrence by Edward Bauman and Helayne Waldman. (A lot of detail)

    Fight Now: East & Live Proactively Against Breast Cancer by Aaron Tabor (Very straightforward and easy to read)

    Breasts: A Natural & Unnatural History by Florence Williams (very recently published, lot of info about environmental risk factors)

    I found these books by searching my kindle but I guess you could probably find them in book shops or mayby libraries or online.

    Good luck Louis. I hope all went as well as possible with your consultation this week. Janet

     

     

  • I've been reading a lot about breast cancer too since my diagnosis - treatments, risk factors, minimising chances of re-occurence. I agree it's good to be as well informed as possible when talking to doctors but I think it also gives you some sense of control over the situation.  With cancer it's like some insidious evil thing has invaded your body. I feel that by learning as much about it as I can and taking some steps to minimise the chances of it coming back that I am taking back some control. Knowledge is power I reckon.

    Some books I've read that you might find interesting are:

    The Whole Food Guide for Breast Cancer Survivors: A Nutritional approach to Preventing Recurrence by Edward Bauman and Helayne Waldman. (A lot of detail)

    Fight Now: East & Live Proactively Against Breast Cancer by Aaron Tabor (Very straightforward and easy to read)

    Breasts: A Natural & Unnatural History by Florence Williams (very recently published, lot of info about environmental risk factors)

    I found these books by searching my kindle but I guess you could probably find them in book shops or mayby libraries or online.

    Good luck Louis. I hope all went as well as possible with your consultation this week. Janet

     

     

  • Hi Louie

    Wishing you luck at your post op appointment.  I hope it is good news you recieve.  Keep us posted.

    I also like you and like to read read read about our journey and get as much info as I can.  I also enjoy reading other peoples journeys because it gives me strength and knowledge to carry on.

    Fingers and everything else crossed for you.

    Mich xoxo

  • Hi Louie

    Wishing you luck at your post op appointment.  I hope it is good news you recieve.  Keep us posted.

    I also like you and like to read read read about our journey and get as much info as I can.  I also enjoy reading other peoples journeys because it gives me strength and knowledge to carry on.

    Fingers and everything else crossed for you.

    Mich xoxo