Calling all TNs

Cocker_Spaniel

Mike you made me laugh so much. I PROMISE never, ever to call you a fairy.

Sweet emotion welcome to our supportive group of ladies and our F...... I mean Mike lol. They are all a great source of helpful information.

Meadow there was enough food to feed an army at the BBQ but my old feller always cooks too much which is just as well as someone usually calls in and is hungry.

Cocker_Spaniel

Something to brighten your day.

What did the patient say to the surgeon and his team just before they gave him anaesthetic?

Anyone want anything while I'm out.

Lou53

Hi all,

I saw my oncologist the other day and I asked about having a scan when I am done with treatment. In the beginning, he told me I would have one but now he is saying I won't be getting one. I had a lumpectomy with 2 positive nodes removed in October and started chemo in December. He said that the scans give a lot of false positives and we are just trying to kill off any rogue cells at this point which a scan would not pick up. He said they will test my blood and do a scan if I start having any symptoms. I have been thinking about this and this worries me! I have met several people on this journey who went in for other procedures or were in some type of accident and found they had Stage 4 cancer with no symptoms! Have you all had scans? I am so paranoid now that if something has spread it will be too late. Are the blood tests enough?

StefLove

lou, my oncologist told me the same exact thing. I had a lumpectomy and nodes removed (1 positive) and then chemo. after chemo they wanted to do another lumpectomy due to iffy margins and i demanded another scan for that surgery. after radiation i asked about more scans and thats when they said no. they said they only did the scan after chemo to check the lymph nodes, which they removed more of. frustrating, I know!

LoveMyVizsla

I intend to ask my MO about follow up imaging. My tumor couldn't be seen on the mammogram, even though it was easily felt, so what good is it for me to have them? MRI is what I'll be pushing for.

Lou53

I am betting that this is an insurance issue! Mammograms don't do much for me as I have dense breasts and end up getting an ultrasound anyway. I asked if I could just get the ultrasound and skip the mammo next time. I'm mostly afraid of the cancer that was found in my lymph nodes. One of the nodes had a tumor twice the size of the one in my breast. I'm afraid of this moving elsewhere. What are we supposed to do?

Stef, did they find cancer in your lymph nodes after chemo?

jlstacey

I was told the same thing. We just have to be hypervigilant. Until recently, I didn't know exactly how to do that, because I'm one that often just brushes things under the rug (and rightly so, most of the time). I've been having headaches, a change in taste and some weird feelings in my head. Again, I would normally shrug it off. I have MO appointment on Monday as a follow-up anyway, so I plan to as for a brain MRI. When it comes time to get the results, I'm going to be so scared.

I totally get wanting to have the scans regularly. I sort of want that, but also don't. If I let myself, I would get obsessed with it all and spend way too much time reading worst case scenarios (not intending to, though. Those medical journal articles don't paint pretty pictures) but I have taken a huge step back becase I have to.

Cocker_Spaniel

Ladies I think you will find its universal on here, no scans unless you have symptoms. I have an ultrasound with my yearly mammo but other than that no scans. I had cancer in four nodes and one was encapsulated which means the cancer was coming out of the nodes

jlstacey chemo can give you headaches and a change in taste. Even after four years I still cannot taste food as I used to.

Lou53

This is so frustrating! I feel like I will be living on pins and needles. Hope the blood tests are a good indication of anything going on..

Luvmydobies

Thanks for the prayers and well wishes for my appointment Monday! I'm getting really nervous because I've had pain in my upper right side for awhile. Sometimes I don't notice it too much if I'm busy. It hurts more when something hits it like my dogs paw or something. I'm REALLY scared it's liver mets since the pain is in that area!I haven't googled in months and I made the mistake of doing that today which is fueling my anxiety. Ugh! I've also been having heartburn more often but I do notice that's worse if I eat something I shouldn't. Also, this will be the first appointment where I'll be by myself. My husband will be out of town and I'm scared I'll get bad news without him with me! Yikes! I know I've missed some posts and I'm sorry. I'm just a bit of a mess today!

HausFrauMi

I cut my hair bob/chin length and it has red, purple and green chunks in the front on both sides....figure if it's gonna fall out in 4-6 weeks I'm gonna have fun. My Kids say I looks like a rock star! I need to get on the laptop so I can upload a picture to my profile!

MRI Sunday morning.

And I got a good name on a 3rd opinion should I still be undecided after my multidisciplinary clinic on Wednesday. Dr Lisa Newman (new to Henry Ford hospital) not as convenient as my current hospital but 45 mins is still reasonable.

Cocker_Spaniel

LUV will be thinking of you on Monday. Try not to panic until there is something to panic for and in all probability everything will be ok. I feel sure you will be fine. How is your house build coming on are you near to moving in. In your pocket with hugs xxooxx

HausfrauMi you rock already just doing that to your hair. I bet it looks great. I always wanted to do something drastic and out of character to mine but never did so good on yer girl. On the subject of doctor's go with the one you feel more comfortable with.

Luvmydobies

Thanks for the encouragement and hugs Cocker. You're so sweet!! I just have a scary feeling because of the location of the pain. I'm trying not to panic but I woke up a lot last night with that doomed feeling. Ugh!! Anyway the house stuff is slow. They have finally got all the permits finished and should start laying the foundation this coming week. We are stuck in the rental for longer than what we wanted. Last night when I kept waking up I kept thinking what if it's a sign that our new house is so delayed? Like what if this checkup isn't going to bode well and that's why God hasn't let the new house be done. I know He doesn't work that way supposedly but He does work in mysterious ways. Sorry for being so down but I'm really struggling. I've been stress eating a lot and haven't excercised in awhile so I'm hoping If this is mets that it's not my fault. Ugh, crazy thoughts!!!

jlstacey

HausFrau- rock on with that hair! Dr. Newman does TN research. Did you know that? She focuses on African-American/African women in her research, but she would be a great choice! She used to be at U of M. I didn't know about her when I selected my doctors but I did consider switching to her.

CarolinaAmy

Rock the hair, HausFrau!

And Ally, I'm so thrilled to hear that they can't find anything on the scans. That is wonderful!

Yep, another one with no scans. They didn't even do anything during treatment. I get one mammogram after I finish chemo this coming month, and that's it. No MRIs, PET scans, etc. They also don't run blood markers. I'll basically go in every three months, get my vitals taken, and get sent home for the next three months. I honestly don't really see the point when it comes down to it...

We're going out to dinner tonight, and I'm so hopeful that I might be able to taste something and enjoy some food for once. Our old babysitter (who has graduated college and gone on with her life) really wants to give us a night out as a way to support us through all this. Sweet, sweet girl. Hopefully this gets me out of the lousy mood I've been in all week.

Luvmydobies

Amy, they will give you a thorough exam when you go in every three months. They will ask if you have any concerning symptoms and it will be your time to address those if need be. They don't do scans unless there are any symptoms they are concerned about. Let loose tonight and have some fun

Allydp

Thanks everyone. I'm relieved as well and looking forward to my GI appointment in a few weeks so I can knock this reflux out.

AL - you are too funny!

Luv - thinking of you! As you told me last week...as of right now you're NED! Acid reflux and stomach pains can trigger lots of anxiety, but you're STILL NED! I will say lots of prayers and good thoughts for Monday. I think these appointments can be such a trigger, so I'm sure that's not helping anything. I know I start to think about all my pains a little more around my checkups too. And I have the same thoughts about why things happen or don't happen...like maybe it means the cancer is back or coming back... Don't let your mind go there! That's just the anxiety talking! Hang in there. We're all with you Monday. xo

Haus - your hair sounds awesome! And great choice with Lisa Newman. I saw her when she was at UofM for a second opinion and really liked her!

Amy - thanks! How sweet of your sitter. Have a wonderful evening out, you deserve it!

No scans here either by the way unless investigating new symptoms.

ajb_12345

Hi! First time posting in the TNBC forum.

I am 34 years old, diagnosed September 2015. Stage 2B TNBC and positive lymph nodes. I am PALB2 positive. I was able to get a genetic profile of my tumor before treatment which showed many genetic mutations, of interest were PALB2 and STK11. My oncologist said that with the genetic markers of my tumor it was most likely made up of two different types of cancer, one that responded well to TAC and one that didn't. Regiment was to do 4 round of TAC, and if residual cancer left then do clinical trial of Cisplatin and Everolimus.

4 rounds of TAC was completed 12/29/15. A breast MRI and biopsy was performed about 3 weeks after. Roughly 80% shrinkage was shown, and some residual cancer. TAC preformed quite well, but not enough for pCR. The cisplatin is supposed to work well with the TNBC and PALB2 mutation, and the everolimus gets at the STK11. Treatment should start this week. Hoping that this clinical study will bring pCR!!

Luvmydobies

Ally thanks for the prayers love! My husband swears I've complained about this before and nothing has come of it. But still, I'm nervous! I can't remember if I had it before my CT Scan I had last March which was clean or not. I had that done for left sided pain, and my GI is the one who ordered it. Anyway, thanks again for the support!

ajb, welcome to our wonderful group! Here's to tthe new treatment knocking the cancer out of the park! You'll be in my prayers as well as in many other's as well! Hang in there! 80% shrinkage is pretty good and it sounds like your doc is on top of things. HUGS!!

Lookingforward66

hello ladies & gentlemen.

I need an opinion from you all. Or if any doctor has said yea or nay that helps too. I have not been taking the flu shot. This is the second year (this exact time) that I have gotten the flu. Do not recommend for weight loss but does a bang up job of it. How many of you get the flu shot? Any of your doctors recommend it? Please help me decide. I know it mine to make but your opinions are always so on point. I value your advice.

Luv. In your pocket tomorrow.

My MO does scans if I beg. She is aware of the mental side of this CRAP. (Notice Crap & Cancer both start with "C"). Need good words that start with C.

Maybe cute, anyone else got any good "C" words?

Thanks for any & all advice.

Marsha

LoveMyVizsla

I never used to get the flu shot until I got lupus. Since then I get that and I got the pneumonia vaccine as well. I'm not old enough for the shingles vaccine, but I do want that when the time comes. I had a vicious case of chicken pox when I was a kid.

Cocker_Spaniel

ajb 12345 welcome to our site. Great, well not great you are here, but you know what I mean.

Lookingforw I get the flu shot every year. The only time I didn't get it was when I was having chemo and my oncologist said she preferred me not to have it. I believe it does protect you against the worst types of flu so I think it is worth it.

The only word I can think about that starts with C is CURE.

Thinking of you today LUV and in your pocket with hugs.

ajb_12345

My oncologist highly recommend the flu shot for me before I started treatment. I believe I received it the day of my first TAC, or it was a few days before. Time line is a little blurry to me now.

jlstacey

I got the flu shot at my oncologist's office last fall. They had signs all over the office when I went in for a follow-up so I just did it there. I usually get charged for it at my PCP, but did not when I got it at the MO. Go figure?

Meadow

Welcome ajb!

Cocker, yes.....cure.

Luvmydobies

Thanks Marsha and Cocker! XO!!

Marsha, I get a flu shot every year also!

Lookingforward66

Thank you all so much. I WILL be in line next year. Not even want the thought of doing this again. LUV I am snuggling in your pocket tonight so I don't miss the appt tomorrow. I'll wear a mask so you can't catch this.

😷

Marsha

SA8PG

Luv,

Sending you my prayers. Lots of extra love & hugs too.

G

Luvmydobies

Aww Marsha I hope you feel better soon! Said a prayer for you! Get plenty of rest and fluids.

Thanks to you as well SA8PG! You ladies mean a lot to me. I really mean that! XOXOXO!!!

Shopgal2

I got a flu shot from my mo at the time of my 2nd or 3rd AC. My mo said I needed to have it. I was getting neulesta at the time also so noflu symptoms reaction.