Calling all TNs

Love the news from MD Anderson!

Now, I'm off to find some cannabis...

Karen & Kareybeth:   I hear ya!   I have been in a holding pattern too since I finished my treatment of chemo and radiation on June 28.   I saw my MO and BS but the only follow-up besides a CA27-29 blood test is a mammo next month and a breast MRI next year.   I just don't feel comfortable with that. With small, dense breasts, a mammo is worthless IMO and that is all they are offering after a year of treatments!  Plus, my BS scared the heck out of me when I asked what signs that I should look for and he pretty much told me that if it spreads, it is terminal, but if it was to spread, I should hope it is to the bones as that is most treatable.  

So here I sit not knowing if the treatments even worked.  I keep feeling the lumpectomy area and it feels all bumpy.  I had a huge hematoma after surgery, so that has made a huge concave area too.  I keep feeling like the other shoe will drop too.   So, I have decided to go to a different BS that is about 1.5 hours away (N of Atlanta) to get a second opinion on follow-up care.  A friend recommended her after she saw me in a spontanious breakdown of crying and saying I don't know if I have beat this thing.  I go next week on Wednesday.    I hope I find some peace of mind and hope you do too.  Please let me know if your scans gave you some comfort as I have been wondering if I should ask for a PET or CT so I can move on from this spot I am stuck in.

Inmate and Hope - thinking of you both and sending loving ((((((hugs))))) with the rest of the family here that treatments are kicking FC A*****.

Hey Guys, Isn't it so weird that the doctors don't offer anything up, up front!! On this site they have questions to ask but by the time you are finished with the whole year of waiting, worrying and treatments up front YOU ALREADY KNOW ALL THE CRAP that they do!!

At first I was just told it was not HORMONAL- They never said negative or triple negative. My sister had hormone treatments for recurring LARGE cists that weren't cancerous and they gave her HORMONE treatments. SOoooo she said that it was Great I was positive. I sat with that comforting idea until I was told by the nurse navigator that it is NOT good. They would prefer me to have hormone treatments because now they have to basically shoot in the dark with when and where and if the cancer will return since I do not get anything to keep it away.....insert BIG BOO HOO FEST!! I cried for days. AND at that time she did not say or my onc say I AM TRIPLE NEGATIVE. Insert CUSS WORDS!!

Good thing  I talk to God all day long!! I think is the only one that hears or listens to me.

My take CatWhispurrer & FernMF is THEY DON'T EVEN KNOW!! My sister is going with me on October and of course all my tests and she is going to ask her questions because she thinks I just don't listen and I really don't know what is happening or is going to happen. I would bet her money if I would ever have any that when she is finished she will know a lot less than me because I am the cancer survivor!!

It would be great if they did have resources that we can use or go to so we can know the full scoop but they don't.

I will have Labs(blood taken) every 4 months for the next year and of course at end of year ALL THE TESTS bone, Ct & mammo and mid ways a mammo on my right breasts since it is where I have the lumpectomy. So in between the four months I will just PRAY AND BEG GOD TO GIVE ME STRENGTH AND STAY WITH ME AND HOLD MY HAND

Fern ASK YOUR DOCTOR, no matter what TELL HIM you want to know how proactive he is going to be and outline his plan for follow up!! I would!!

With my treatments, even during chemo I had blood works done before every treatment, and every other week labs from the oncologists. After Chemo I have been scheduled for the tests and every 4 months I have Labs with my visit. As far as I know that will continue so I have been told. I'll have to find out myself?????

Prayers for both of you and PLEASE keep in touch. I would love to know your progress ONWARD & UPWARD. Let's prove em all wrong.

Karen

Journey4Life

I don't know why ALL the doctors are so different when we all sound alike. haha I can only assume it is in the way the doctors think and have learned to decided how much more they can do for each patient ~aka~ the team of doctors. I don't know but after everything is positive for an ALL CLEAR for me I am pretty sure it will be every 4 months for labs and twice a year for mammo and the yearly test scans. PLEASE ask your doctor to explain his plan for you. I sure as heck would!! 

BASICALLY they are saying they can't do anything else with TN until IF or WHEN it should return. PRAYERS for all of us it doesn't & won't!!

Just out of curiosity has it been a full year since dx? Mine will be 3 months after treatments then a year as I was told and every 4 mths until a clean full year. But when you go to your onc/radiologists they also check you don't they? I go to them every 6 months and the surgeon twice then a year. MAKE THEM GIVE YOU A PLAN OR SCHEDULE or ask someone to find a source that will!!

I guess what I am trying to say is they should tell you something about the progress. Dang!! I would call the nurse navigator or one of the nurses and ask her set that all up for you

PLEASE KEEP ME & OTHERS INFORMED. WE HAVE TO TRAIN ONE ANOTHER!!

Prayers

Karen

I'm going to share something.... My Oncologist does not order scans for early stages and insurance often fights it. After my Chemo is done, I will feel aches in several places and he will order the scans...... I am not an advocate of lying, but this little white lie won't hurt anyone and could save my life. We do what we have to do..

My MO says no scans etc unless there is a reason to (ie: symptom).  I am part of the metformin trial though so I will have blood work (extensive) every 6 months.  And between my MO, surgeon and family doctor; one of them sees me every 3 months for a check up.  I have a mammo on Nov. 5th and will have them yearly.  But as for MRI, CT or PET.....no.  I do need to have a bone density scan every year though because of a medication I was on as a child that can cause bone density to decrease.  So I was having that anyway and will continue.  I always have a yearly pap etc so I'll continue that too.

I am also feeling really good but that makes me scared to think that the shoe will drop.  It's hard to try and walk forward when you feel like there's little eyes staring you down and something just waiting to pounce.  I see the counselor at the hosptial every 2 weeks and that helps me to normalize my feelings.  She only sees the BC people so she can tell me that what I am feeling is very normal.  I'm coming up to the 1 year mark in November and it's scary.  I'm back to work on October 1st after being off since my surgery on November 22/11.  

Some days are easier then others but yes I live in fear of recurrence and I am also hoping that shoe NEVER drops (even if it's a designer shoe.....I'm not interested!!)

borntosurvie

Congrats on coming up on your one year. I know in the back of my mind it will always be there. I just have to not let it consume me and I am sure once you get back to work that will help you out tremendously because you will get back to your normal path of living. It just very well may be in their mental markers what they think is best for each individual. I would LOVE to find a decent primary but that too shall come one day. I do also have several doctors in between that watch out. My primary well errrrrr a different situation all together. Working on that on.

Prayers

Karen

Kareybeth, thanks. I hit my one year since dx in Aug. I went back to work in Feb, I missed everyone, and was glad to be back. However, daily someone would ask me how I would feel, and that always seemed to conjuror up memories. I changed jobs this past Aug and chose not to tell anyone about my cancer. Although I have my own daily reminder, since no recon, I manage to go on and at times even forget it. I might tell them but will wait awhile. It seems to help my psyche. I only completed 7 of 8 tx, and no rads. I had open heart surgery for a clot after my 7th tx and mo didn't think I needed last tx. That is hanging over me, and like "born" waiting for recurrence, but until them..living for today!

Gosh, ya'll are talking about all my concerns. My onco does not believe in scans unless I have a lingering problem lasting more than 2 weeks. Other the flip side my rad onco has me doing mammo on my cancer boob every 3 months and the other every 6 months. I have only hada bone scan, before chemo as my back was hurting me more than it had for quite some tim. I go tthe all clear on that. I forget who mentioned that their lumpectomy area is all bumpy- mine is too. I also knwo I have many hard spots from rads and lymphedema. This makes it even more difficult to check myself.

I often wonder why my onco never ordered a PET scan? He said he just does not beleive in running tests unless something warrants it? I guess the blood work every 4 months will suffice.

Yep that's about the size of the whole ordeal. Only if it warrants. My onco may change his mind after my completion of the tests at the end of Sept. Fine with me  Less stress of getting all worked up!!

Pinky you sound like me. I have a very high tolerance and HATE HATE HATE to take any kind of meds including aleeve for pain so I put it in front of me and dare me to take it!! Usually put it right back in the bottle by the end of the day. I also brush off signs of things/pains aches telling me it is all in my head. My biggest downfall.

You know what Lynn that was a good idea to change your jobs. You don't need a daily reminder of things. You need to move on and you took your first important step. Again Congrats YOU ARE A TROOPER AND A SURVIVOR!! YOU GO GIRL. There will come a time when you will want to share and unfortunately I feel it will be when someone needs you to understand their fears and then you will gladly share

Lory the kind of blood test they give is enough, if they pick it up in that, which they will that's when they will move forward. All these machines and scans doesn't seem to be doing us any more good. I pray the day when they don't have to use them anymore. Just a pill or a shot will do it!! haha BETTER YET A FLIPPIN' CURE!! ALL IN?

PRAYERS

Karen

Today is my one year cancerversary, the day I received that blablabla phone call last year!  I had to edit my "signature line" a few times lately.  I am recovering from my BMXw/TE's.

All my TN sisters, thank you for keeping this wonderful site going.  I come here and read, pray, laugh, cry...we are all doing our best at kicking this F@#*! cancer off the face of this earth! 

Hi Sandlake - congrats on one year! A question for you, why did you have a mastecomy one year after the lumpectomy? Did they find another tumor, or did you respond to the BRCA results? If this is to personal of a question, I understand....

Congrats to the anniversaries!

I just want to mention that if any of you has concerns and would feel better getting scanned or more blood tests as follow-up, you should bring that up to your doctor.  If you request a scan and your doctor denies you, then your doctor is liable should something show up later.  This came up when I had hodgkins.  My original doctor laid out a plan for me which included a scan at the end of treatment to be sure the tumers had shrunk and then a follow-up scan three months later to confirm no changes.  I had to move midway through treatment.  My new doctor did not want to do the follow up scans.  I had no symptoms, but I had to know nothing else was growing inside of me.  Eventually, he agreed to the scans.  I was fine and more importantly, I had peace of mind.  Most doctors won't take chances and deny a request.  If you have genuine concerns, don't hesitate to voice them.  You are your own best advocate.

@borntosurvive - What's the metformin trial?  I take that for pcos and have been taking it through my treatments.  Is the drug also in a breast cancer trial?

My MO doesn't believe in scan unless there is a lingering symptom, then he calls for one right away.  I can't stand the anxiety of scans, and have to be careful not to ignore symptoms but I have had some weird things come and go.  Since they "went", I assume they weren't cancer.  One of the strangest has been a burning spot in my scalp.  It was present for months but also began a few months after starting the tamoxifen I take for the 5-10% ER they found after chemo/surgery.  I rarely feel it now.  I have also had rib pain on both sides that has lasted for several weeks then abated.  I've been walking for several months now and cycling some, even up to 15 mile rides on a hybrid bike, but yesterday I cut brush everywhere away from the house as someone tried to break into our privacy fence.  I was so worn out!  I think it just takes a very long time to recover from chemo and the surgery.  Every time I use a new muscle group, I am very sore and fatigued and sometimes get new pains.

My MO does take blood every three months for tumor markers, though.

Hello to everyone.  Seems there are many new names on this thread over the past few days.  Welcome to all.  As I read the signature lines, appears that i am now and "Oldie". 

I wanted to chime in regarding scans.  My last PET scan was 12 months ago due to lingering hip pain....turns out that it is degenerative hip disease.  My Onc offered another PET at my 6 mo appt in April and I declined because i was/am feeling good.  My next 6 mo check up is next month and I am sure she will again offer a PET scan but as of now, I will be declining.  I just don't want to subject myself to the radiation exposure, if I do not have any sympotoms to warrant the scan.  PLUS, the anxiety of waiting for results is HORRIBLE!  I turn into a real emotional mess for the days it takes to find out what is going on.   I know much of my confidence is due to the fact that i am over 3 years out.  That doesn't mean that i am not vigilant with paying attention to my body's messages and I do keep all of my follow-up appointments.  I think about cancer everyday.....just not as many hours or minutes a day as I used to.

I totally agree that it takes the mind and body a long time to recover from all the surgeries/procedures and chemo that is needed to treat this crap.  I know that it was a full year PFC that I even started to feel normal again.  So you newbies.....hang on and keep plugging along, you'll get there.

Love to all of you.......Especially  Inmate and Hope!