Kazza

[Karenborg]

Hi all. Hope your all doing well. In Jan 2023 I had bilateral tumours each being 7mm. Was tested for braca2 came up positive (history of bc in family rife!). Lymph nodes clear. Opted for double mastectomy and oomphaloompha surgery (removal of ovaries and tubes). Its not really called that but close lol. Her2 - er+. Have been on letrozole since Jan even before the operation in march. So far no side effects. Yesterday I went for ultra sound for my chest (where there were once boobs). I have opted to have this done every 6 months just for surveillance. I have been following for months but wasn't ready to share until now. After reading so many posts I understand that the dreaded thing likes to come back after many years! Usually to bones. Recently I've read a possible treatment for women with triple neg and its a dewormer called fenbendazole. Has anyone researched this please? Or even know about it? Will try to add link for those who are interested. open.substack.com/pub/fenbe...

[kokopelli2017]

hi and welcome. sorry to hear of your recent diagnosis of primary BC and all that surgery you went through....not easy. great news that your lymph nodes were clear👍. and also good to hear you are tolerating the letrozole.

statistically speaking, as it stands now....3 out of 10 women diagnosed with primary breast cancer will have it return as Stage 4, metastatic...MBC. which is a LOT of women (and men). however, that also means 7 out 10 women with primary BC do NOT have it return. I guess I am just saying that MBC is not a 'given' for you. my advice, not that you asked for it😉, is to go about your life and not assume the cancer will return. why waste your time worrying about something that may not happen. just my thoughts.

I believe there is a site on health unlocked for those with primary BC that you might want to check out. they are in the same boat as you right now....so to speak. you are more than welcome here as well....it just might make you worry unnecessarily.

best wishes...

carole💜

[Karenborg in reply to kokopelli2017]

Thanks. That's certainly food for thought. Why worry now, save it for when one has too. Besides people are living much longer with all the new meds etc available. So that's also good news. I will look on this site for similar experiences to mine. Thanks once again. But did you read about fenbendazole? Interesting research going on.

[kokopelli2017 in reply to Karenborg]

hi again. I try to stay away from meds as much as possible. definitely not interested in dewormer. but thanks for the post. good luck with all. xoxo

[sonycamera]

Hi I’ve been on letrozol for 3 yrs as well as Ibrance. Yes I’m tired a bit - no other effects. I’ve had breast cancer 3 times. All in breast area. One in 1990. Lumpectomy chem and radiation. 2nd in 2018 - tumors in both breasts - double masectomy. 3rd in 2021 - small in underarm - radiation. Pet scan next month as well as oncologist every 3 months. As you can see the cancer has not spread beyond chest area. Live in gratitude.

Never heard of dewormer nor would I try without oncology input.

Wish u good life.

[Karenborg in reply to sonycamera]

Hi thanks for your kind response. I can see you are a pro at this (unfortunately) yet you seem very positive which helps no doubt. I do wonder why the cancer clinics are so busy but I've put it down to lifestyle etc because back in the day it wasn't so prevalent. I always thought I live a pretty healthy lifestyle yet the beast got me (braca 2). And my older sister had her bc discovery 3 months prior! And I lost my other sister sadly back in 2010 to be. I'm ok travelling along on this journey. Will do my best onwards and upwards. Thanks

[Gallivanter]

I would look into the Care Oncology protocol, careoncology.com, which includes one of the anti-parasitical. I've been mostly on it for several years, with the support of my primary oncologist. There are various valid/NIH, etc., studies on it, I don't recall conclusions (sorry), but that alone tells me that real scientists are taking it seriously. My doctor told me that it's somewhat accepted in other countries and it falls under "might help/won't hurt".

BTW, another of the drugs in this protocol is a statin. When my cancer mutated to triple negative, the doctor at Sloan-Kettering said "you must go on a statin, new studies out of MD Anderson show it's effective". I said, "I've been on one for years..". Point is, who knows what might come out about the other three drugs, in time?

[Karenborg in reply to Gallivanter]

100% just because it's anti parasitic shouldn't deter one. My goodness if only we knew the ingredients in all other cancer meds some being extremely toxic. Yes I've read the scientific studies (trying hard to understand) but it's harmless and it's uses are recommended for other ailments also. Do you know the name of the one your on and dosages please. Thanks hope your doing well gallivanter

[13plus]

I’m from the same party I’m even an Aussie( but living in the US). There is a non-profit here dedicated to people with BRCA ,called FORCE . My best advice is to live your life with awareness but also positivity. My journey started back in 2005, recurrence 3 years later, and then mets in bones in 2018, and still going

Eat well and exercise regularly , everything else in moderation . Get regular skin checks too

[Karenborg in reply to 13plus]

Ok so I see you have been living this for a long time. My point being a long time! That's amazing . Dont get me wrong it sucks for sure but it does go to prove that treatments are extending life with people who are afflicted. I will take on your advice and pinch myself everyday. Thanks 13 plus. You ever coming home?

[13plus in reply to Karenborg]

I wish I could, it was always my hope to return, but sadly I can’t see it happening at this point