TNBC spread to Lung

LMW211

Hi, I'm new to the group and have been diagnosed with triple negand just received news a mass was found on my lungs during my PET scan. I really need to hear survivor stories right now if anyone else had their's spread! I can't take any more bad news. I'm a stay at home mom with a 2 year old and need some hope desperately. Thank you!

Moderators

Hi LMW211 and welcome to Breastcancer.org,

We're so very sorry you find yourself here, and for the recent update to your diagnosis. However, we're really happy you've found us. Our incredible community is a wonderful source of inspiration, advice, and support -- we're all here for you!

You're sure to get some great responses here soon from others who have experienced a similar diagnosis. It's a scary time, but we're sure others will help you feel a little more hopeful about the future.

In the meantime, you may also want to reach out on this thread, where others share their experiences with triple negative breast cancer that has spread.

We hope you find encouragement and inspiration here -- please let us know if you need anything at all!

--The Mods

santabarbarian

LMW211 I sent you a PM.

People newly diagnosed with a serious cancer are well advised to seek expert second (or third!) opinions. Especially if there is more than one possible approach, it is wise to hear from experts. There are TNBC experts around the country... Tiffany Traina at MSK and Melinda Telli at Stanford are two, off the top of my head. You could google the nearest large cancer hospital to you (MD Anderson, Mayo, etc) along with 'TNBC' and more names will come up. The national experts are often more aware of clinical trials and cutting edge research.

Integrative Oncologists are also worth their weight in gold. They can recommend complimentary practices to boost the results of chemo. They are more scarce but they exist. They know about things regular MOs do not.... and you want to do it ALL against this cancer.

You want the tumor tested for any mutations that might prove actionable. If you have the "right" mutation, it can open up a lot of treatment possibilities. Foundation One or Tempus are two testing programs. They will slide on price if you are in need.

I have two friends with primary lung cancers (not BC) who both received surgery for them. One had a complete cure and is about 15 years out with no further problem. One who was stage 4 de novo NSCLC and has had *5* great years of NEAD on Tagrisso, due to an EFGR mutation. Your disease is treatable -- you just need to hone in on the most aggressive and effective approach with the fewest side effects.

There is some debate about removing the primary tumor in the breast once it has spread. Ask about the pros and cons of that. Ask about curative intent-- are the trying to manage your cancer, or cure it?

The grade of the cancer is very important as is the "type " of TNBC (there are several varieties of TNBC: luminal AR, basal 1, basal 2, etc) and they respond differently to treatment. Get an AR test (androgen) as that might open some off label options too.

TNBC is scary, but it can respond really, really well to the right chemo.

Ask about Metformin -- tons of evidence it is anti-cancer -- easy to add to any treatment regimen, with no SEs.

Ask about a ketogenic diet, which tends to help against TNBC. (Keto should be a 'vegan/pescatarian' veggie-based keto not a cheeseburger w no bun keto....)

Ask about fasting-mimicking prior to chemo (Dr Valter Longo USC).

Ask about high dose vitamin C IVs. At worst they do no harm and hydrate you and reduce chemo SEs. At best they are effective against the stem cells which drive cancer, with no toxicity to the healthy cells.

Ask about chemo before or after surgery. My advanced TNBC was treated with chemo first. The advantage being, you can watch the tumor shrinking and know you are on the right chemo. It fet weird not to have surgery first but in retrospect I think it was really smart, as well as receiving systemic treatment more quickly.

There are a lot of things you can throw at this beast!!

Pop in to "Calling all TNs" - it's a very active thread and you will get a lot of support.

santabarbarian

PS by the current staging I was stage 3C when diagnosed.