Ginny Mason
@ibcresearch1.bsky.social
Research advocate for inflammatory & advanced breast cancers. Exec, Director Inflammatory Breast Cancer Research Foundation, the only IBC nonprofit advocating for patients & research for over 25 yrs. www.ibcresearch.org. RN, full0time volunteer
As #pinkoctober winds down, I hope you've learned the importance of knowing & paying attention to your body & Realizing not all breast cancer has a lump. Know that evidence-based treatment is needed when dealing with cancer. learn more at www.ibcresearch.org
October 30, 2025 at 2:13 AM
As #pinkoctober winds down, I hope you've learned the importance of knowing & paying attention to your body & Realizing not all breast cancer has a lump. Know that evidence-based treatment is needed when dealing with cancer. learn more at www.ibcresearch.org
In 1994 there was no 'standard of care' for #IBC. The NCI tumor board suggested neoadjuvant chemotherapy based on a published study. Since then, we've learned that #chemofirst works best for aggressive breast cancers. Speak up if your doctor suggests surgery first....or get a new treatment team!!
October 22, 2025 at 10:35 PM
In 1994 there was no 'standard of care' for #IBC. The NCI tumor board suggested neoadjuvant chemotherapy based on a published study. Since then, we've learned that #chemofirst works best for aggressive breast cancers. Speak up if your doctor suggests surgery first....or get a new treatment team!!
It's hard to advocate for yourself until you learn. Check out www.ibcresearch.org for info and if your treatment team has limited experience with #IBC, direct them to NCCN.org for guidelines developed by physicians for physicians. (check the patient guide they offer as well) #Youareworthit
October 21, 2025 at 1:57 AM
It's hard to advocate for yourself until you learn. Check out www.ibcresearch.org for info and if your treatment team has limited experience with #IBC, direct them to NCCN.org for guidelines developed by physicians for physicians. (check the patient guide they offer as well) #Youareworthit
Oct 16 was #NationalMammogramDay. While they can be useful, they seldom pick up #IBC. Don't let a Dr dismiss your concerns just because they didn't see a lump. YOU know your body, so keep pushing for answers. #AdvocateforYourself
October 18, 2025 at 11:01 PM
Oct 16 was #NationalMammogramDay. While they can be useful, they seldom pick up #IBC. Don't let a Dr dismiss your concerns just because they didn't see a lump. YOU know your body, so keep pushing for answers. #AdvocateforYourself
Last yr there was no IBC specific ICD code. It was difficult to obtain accurate numbers of ppl dx with IBC. Thanks to the the #IBCCollaborative, we made that happen! Share this info with your HCP's and don't forget to tell them about the #IBC Diagnostic Scoring Scale as well!
October 15, 2025 at 8:38 PM
Last yr there was no IBC specific ICD code. It was difficult to obtain accurate numbers of ppl dx with IBC. Thanks to the the #IBCCollaborative, we made that happen! Share this info with your HCP's and don't forget to tell them about the #IBC Diagnostic Scoring Scale as well!
October is all about PINK & happy stories. 1/3 of #inflammatorybreastcancer pts are stage 4 at dx, 1/3 develop stage 4, remaining 1/3 are NED/no evidence of disease. Don't ignore stage 4....be there for those whose treatment goes on and on and on. They need your support & help. #stage4needsmore
October 13, 2025 at 2:22 PM
October is all about PINK & happy stories. 1/3 of #inflammatorybreastcancer pts are stage 4 at dx, 1/3 develop stage 4, remaining 1/3 are NED/no evidence of disease. Don't ignore stage 4....be there for those whose treatment goes on and on and on. They need your support & help. #stage4needsmore
Only 5-10% of breast cancers are hereditary. Most breast cancer is sporadic/random. Get your mammogram and clinical breast exam. Check your breasts for anything that looks 'different'. Look in a mirror...look under the breast. Know your body!! www.ibcresearch.org
October 13, 2025 at 1:00 AM
Only 5-10% of breast cancers are hereditary. Most breast cancer is sporadic/random. Get your mammogram and clinical breast exam. Check your breasts for anything that looks 'different'. Look in a mirror...look under the breast. Know your body!! www.ibcresearch.org
Breast pain doesn't always mean cancer but symptoms that don't go away within reasonable time or with home care need evaluation by your HCP. Take it seriously & keep pushing for answers. www.ibcresearch.org
October 9, 2025 at 2:34 AM
Breast pain doesn't always mean cancer but symptoms that don't go away within reasonable time or with home care need evaluation by your HCP. Take it seriously & keep pushing for answers. www.ibcresearch.org
#Clinicaltrials can be a great option for treatment but it can be tough to find one that includes #IBC patients. Not everyone can travel a distance to find a trial, insurance may not cover other care out of state and it's tough to leave your support system. Things need to CHANGE!
October 7, 2025 at 10:35 PM
#Clinicaltrials can be a great option for treatment but it can be tough to find one that includes #IBC patients. Not everyone can travel a distance to find a trial, insurance may not cover other care out of state and it's tough to leave your support system. Things need to CHANGE!
Think you're "OK" because you had a negative mammogram? Nothing showed up on my mammogram yet #Inflammatorybreastcancer was growing! Don't rely on a mammogram for #IBC....keep pushing for answers! www.ibcresearch.org
October 6, 2025 at 8:38 PM
Think you're "OK" because you had a negative mammogram? Nothing showed up on my mammogram yet #Inflammatorybreastcancer was growing! Don't rely on a mammogram for #IBC....keep pushing for answers! www.ibcresearch.org
Happy #InternationalWomensDay! Lift each other up as we work to improve our world.
March 8, 2025 at 5:02 AM
Happy #InternationalWomensDay! Lift each other up as we work to improve our world.
