Triple negative

Outdoorstom1

My wife was diagnosed as 2b triple negative 9 years ago. She had a mastectomy done, followed by chemo and radiation. She has been cancer free, but we are now going through a scare. She has been experiencing a slight shortness of breath for almost 4 years now and the dr's had not been able to figure it out. Last week she had a cat scan doneof her arteries and the arteries were unremarkable, but the scan through the lungs showed "innumerable cavitary pulmonary nodules. This is highly suspicious for metastatic disease or possibly atypical microbacterial infection." We are awaiting a Friday appointment with an oncologist at Moffit. Our oncologist at home told us it's probably not a recurrence and is likely an infection. Of course that's what we're praying for. I was wondering if anyone here has experienced anything similar or her of anyone who has. Thank you in advance. Friday can't get here soon enough!

KBeee

I do know that lung nodules seem to be mentioned a lot around here, and many are benign. I would for sure want to know what they are and would request a biopsy or some more specific imaging to know what you're dealing with. I'm hoping it is just pneumonia!!!

Outdoorstom1

We met with the oncologist at Moffit on Friday and received bad news. He said the nodules in the lungs are cancer, but coming from somewhere else. He's ordered a PET/CT scan and a biopsy. He also said he thinks its been there a couple years and for us to prepare for the worst. Obviously, we're totally devastated.

pupmom

I'm so sorry you got this news. But you still don't know everything, so try to remain hopeful (I know). I don't have any experience with Triple Negative, but hopefully others who do will respond. (((HUGS)))

SpecialK

So sorry you find yourselves in this situation. It is somewhat unusual for TN to return after this long, has there been any discussion about that? My husband had a CT for abdominal lower right quadrant pain (turned out to be diverticulosis) and the imaging caught the lower portion of both lungs, which were filled with many nodules, too numerous to count - a number over the 5mm threshold for concern. His are benign and unchanged over years now, I am so hoping that this could be true for your wife as well. I am here in Tampa, have received some of my treatment at Moffitt and some at FCS, is the biopsy to be done as VATS?

KBeee

Hoping the biopsy turns up good news. Please do keep us posted.

Outdoorstom1

Thank you everyone for your kind words. I have to admit to being surprised to hear the Dr say it was cancer even before the biopsy is done, to know it's not lung cancer, and to say she's had it for a couple years. Yesterday my wife had an appt with her GP to renew the prescription for her thyroid medicine and hepulled the scan up and told her he's not convinced it's cancer. He said it's possibly an infection and the sudafed she takes daily for her allergies is masking symptoms. We are really on a roller coaster ride. We want to believe he may be right, but don't want to have false hope.

Specialk - He never mentioned VATS and I didn't know to ask him. All he said was it will be a needle biopsy.

KBeee

The biopsy should put an end to all of the roller coaster opinions. Once you get the results, it might be a good idea to get a second opinion...no matter what the results is!

Outdoorstom1

Late yesterday we got a call from the office where the PET scan is going to be done. They said they had been trying trying all week to get approval for the scan from our insurance company, but had not been able to, so the Monday scan is cancelled. The insurance company said they need a peer to peer consultation before they'll approve it. Sure would have been nice if they wouldn't have waited until it was too late to talk to anyoneon a Friday afternoon. Very frustrating. My wife thinks they may want to wait for the biopsy results before approving it. The biopsy is still scheduled for Wednesday.

Outdoorstom1

What an emotional day. I have never seen my wife so upset......it started when she came out after a blood draw at 7:00 this morning. It REALLY sunk in that she's back here after a 9 year hiatus. The CT guided lung biopsy went well, with no complications. Now we wait 2-3 days

anotherNYCGirl

Outdoorstom, - i am so sorry that you and your wife are dealing with this.

Hoping for your B9 report!! Keep us posted!

Hugs to you both

Motherofall6

prayers this all comes back negative. Please keep us updated

KBeee

I hate that your wife has to deal with this. It totally sucks. There's just no two ways about it. I know being a caregiver is challenging too because you want to take the hurt away. It can be a helpless feeling.

Outdoorstom1

We were really hoping to get the biopsy results before the weekend but that didn't happen. Hopefully tomorrow. We're in Florida until May but two of my wife's friends flew in on Thursday and her daughter arrived yesterday. LOTS of love and support, plus keeping my wife busy is a very good thing.

Outdoorstom1

Ok, I need to vent. The biopsy was Wednesday morning and here it is, Monday night and not a peep. We were told 2-3 days....very frustrating

KBeee

Call them. Every day. The squeaky wheel gets results sooner.

Sorry you have to wait so long

Outdoorstom1

Just got the call. It's cancer in her lungs, now a pet scan to determine where it's coming from. I thought they would be able to tell that from this biopsy but that wasn't the case. Petscan next to determine where the primary is

anotherNYCGirl

Outdoortom, - Strengthen that FIGHT MODE now!! Get 2nd opinions, and third if you arent confident in those!

I think there is a board re lung mets, - no doubt others have been through this, too.

There will be good advice there, I am sure.

Hugs and BE WELL wishes.

Outdoorstom1

The petscan shows that my wife's endometrial cancer has come back. She had this the same year as her breast cancer., 2009. We have an appointment with a gyn oncologist on the 25th. I guess I won't post here anymore since we're not dealing with breast cancer. Thanks to everyone for your support. God bless you all.

KBeee

You are welcome to post here regardless. Hoping the cancer responds quickly to the treatments. I highly encourage you to go to the caregiver threads here. Also update here from time to time. Thinking of your wife. And you.

Outdoorstom1

Thank you KBeee. We have been to Moffitt the last two days. On Wednesday we met with the gyn oncologist and really liked her and her Nurse Practioner. As we knew, the petscan showed activity in her pelvic region but apparently doesn't show the size. We went back yesterday for a ct with contrast. The tumor size will dictate whether we go with hormonal therapy (megace 2x daily for three weeks, followed by 2x daily tamoxifen for three weeks, alternating) If the tumor is large we start chemo on Monday. This will consist of 6 rounds of Taxol/carbo, once every three weeks. My wife's attitude is amazing....she's such a strong woman!!!

KBeee

She sounds like a very strong woman, and she is also lucky to have such a caring, supportive husband at her side. It matters more than you can imagine.

Outdoorstom1

We got the catscan results today and there are three tumors in the pelvic area, not 1. 2 of them are over 5 cm's. We start chemo on Monday morning and pray she responds to it.

KBeee

Praying she responds quickly to the chemo.