mTNBC

Hi SHB,

Thank you for answering. I am grateful that I am not the only one but also I am not glad that either one of us have this. I have already done my gene test and my BRCA gene is negative. My mTNBC has metastasized into my lymph nodes, my pec muscle on my chest wall, my thorax (maybe - testing on nodule not done yet) and my sternum. I am really having an issue with my upcoming chemo because this will be my second go round and the first one really destroyed my body. Can you say stress LOL.

I see that you were doing surgery. Have you decided on a lumpectomy or a mastectomy? How is chemo going? I would feel a lot better if I had someone to walk/talk with on this path that we did not choose.

Again, thank you for your response.

Pat

I think it's pretty scary that you found it in February and you didn't begin chemo until June. As you said this is extremely aggressive and very rare. I'm not really having a hard time with all the testing. Next week I get a brain scan and a PET scan to see how far this has spread. I also signed up for palliative care because of all my issues coming into chemo. Chemo is a huge stumbling block for me and i would probably do better if there was a secret immunotherapy drug out there somewhere that I could use instead. Like I said my body got destroyed on the last chemo and I'm not looking forward to more damage when I am already in pain every single day since getting the last treatment.

I too have read a lot of information on Google and can understand why you would say that it is scary and depressing. I research it so I can ask questions to my cancer team even though it is a major downer. My last question to my surgeon was wanting to take a full mastectomy so I didn't get blown out of the water again like this time. I asked him if it was true that because of this type of cancer that it can recur on the chest wall. He told me that yes the recurrence can happen on the chest wall as well as many other places. I remember my last oncologist telling me that even though they got everything that they could see that doesn't mean that I was completely clean and that at any time I could get cancer again as if some biological signal gave them a go-ahead. And that was a simple Her2 type, a ductal cancer that did not spread to my lymph nodes. I had a lumpectomy and thought I was fine until I discovered this lump in April. Ten years exact between those two breast cancers. Absolutely the opposite kind now and the survival rates are really crappy. It took me awhile to get my mammogram because in my town the hospital will not give you a mammogram if you did not have one on file with them from before. Even if it's diagnostic. Pretty stupid rule considering the fact that I don't have one from up here because I lived down South for 13 years. Ended up going a couple hours away to get my mammogram and some biopsies and ultrasounds when I decided to go to the Cleveland Clinic. They were the only ones I could think of in the area that could deal with something as rare and aggressive as this. I expect my chemo will be happening after my pet scan and my brain scan coming up next week which means I'll have to get my port in. I've already cut my hair having learned the last time that it's no fun having globs of long hair in my drain LOL.

I really pray and I really hope that absolutely nothing happens to your body through this chemo. What happened to me I would not wish on my worst enemy. Another reason I'm going to palliative care is because I cannot get myself emotionally prepared for chemo again. Thanks for talking... and listening. I really appreciate it. It's better than sitting here crying like I normally do LOL.

I'm not on chemo yet. I will see my oncologist July 10th because I still have one more surgery to do on July 7th. I just had surgery yesterday to remove two more toenails that were badly deformed because of my chemo in 2013. That will make three toenails total but as my podiatrist said with chemo I may lose more. My last chemo was herceptin and FEC. Like I said compared to this one that one was a pretty easy one, but don't we say that about all the trials we go through, that at the time the one we're in is a lot worse than the one that we thought was so tough from before that we had worked through?

Doesn't seem like they took your cancer very seriously. I know what that's like though. I just knew that mine was aggressive and advocated myself to get people moving on it before it got too far. I was really surprised to see this was your second go-round and that your last one was 24 years ago. That must have thrown you for a loop, I know it would have thrown me for a loop. Mine is only been 10 years apart and I thought mine was rough. Wow.

I'm planning on getting a port for my chemo. Last time they tried putting it in my vein a few times but I couldn't sit still so I kept setting off the alarm about every 30 seconds LOL. It kept them hopping :-). You have me curious l - you said the thyroid is connected somehow to this type of breast cancer. I was kind of hoping you could expound on that. I didn't know it was connected. I thought it was just something that metastasized.

So grateful to have you to talk to. You are a real blessing to me and I really appreciate you.

Pat