mTNBC

Sadiej

Looking for others who have/had been diagnosed with mTNBC.

SHB

https://csn.cancer.org/discussion/326649/mtnbc

Hi I was recently diagnosed with invasive ductal carcinoma, stage 3 triple negative. Started chemo June 1st, carboplatin, paclitaxel, pembrolizumab, every week for next 3 months then every 3 weeks for another 3 months before surgery. Just had a CT scan to see if it has spread anywhere else, currently as far as two auxiliary lymph nodes and waiting for results of genetic testing which will determine further treatments and type of surgery.

Sadiej

https://csn.cancer.org/discussion/comment/1706412#Comment_1706412

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

SHB

https://csn.cancer.org/discussion/comment/1706425#Comment_1706425

I was told if I am positive for the BRCA then it’s definitely mastectomy as well as removing ovaries because chance of ovarian cancer. So far I’m doing good with chemo. No ill effects other than my WBC are dropping which is the norm because of the drugs. So far not low enough to withhold chemo or send me home with injections to help increase neutrophils. I'm worried it’s spread farther than my two lymph nodes under my arm, hopefully it was caught on time but seeing this is a very aggressive cancer anything is possible. I don’t seem to be as stressed now that treatment has started. I found waiting for all the tests, surgeon visit, oncologist visit , much more stressful especially since I found the lump mid February. It is nice to have someone that is taking the same journey to talk too. Google just depresses/scares me.

Sadiej

https://csn.cancer.org/discussion/comment/1706427#Comment_1706427

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.

SHB

https://csn.cancer.org/discussion/comment/1706435#Comment_1706435

What drugs are you on for chemo? I get chrmo drug Paclitaxel once a week, and Carboplatin and immunotherapy drug Pembrolizumab (Keytruda) added every three weeks.

Originally when I found the lump in February I thought it could be a hematoma as I fell on ice in the driveway two weeks prior and had a nasty bruise. Made arrangements for s mammogram which ended up being end of February. Came back concerning so they wanted a spot mammogram and ultrasound. Had those mid March, two days prior I found the one lymph node swelling. Then they wanted a core biopsy which ended up scheduled mid April. Next was breast MRI after biopsy came back positive for cancer. Had that beginning of May. Couple days before it found another lymph node just starting to swell. Mri did pick it up. Saw surgeon mid May who sent me to oncologist as he wouldn’t do surgery before chemo. Here I was ready for surgery not chemo. Oncologist appointment was quick after that and started chemo June 1st. Pretty much the same timeline from when I had breast cancer 24 years ago. Different cancer and lumpectomy apparently got it all so no treatment needed. Only a couple cells in the needle biopsy showed the original cancer, lumps were clear. Never thought I would be in this situation again. Pretty sure my treatment is working. The lymph nodes under my arm have shrunk, the second one I had found is no longer swollen and the first one is almost undetectable now. I’m sure the CT will confirm it since they did put titanium markers in the area when they did the core biopsy. The lump I found has shrunk as well, feels smaller in diameter. I just pray it isn’t anywhere else. However same time as all this my thyroid started acting up so now I’m anticipating them to tell me I have thyroid cancer as well. Something I didn’t know was the two are connected. Go figure. I cut my hair short a week before I started chemo. So far no hair loss but I’m ready. Even purchased a wig that is same length (before cutting) and colour of my hair. My oncologist and nurses at the cancer clinic say I have beautiful veins and won’t need a pic or port. I’m glad cause I really didn’t want one. Hopefully they stay nice. One arm I let them do blood work on and other I save for chemo only lol. Wonderful talking to you as well, take care and it’s ok to cry. Talk with you soon.

Sadiej

https://csn.cancer.org/discussion/comment/1706440#Comment_1706440

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