Sign up Calendar Latest Topics
 
 
 


Reply
  Author   Comment  
nosurrender

Avatar / Picture

Moderator
Registered:
Posts: 7,476
Reply with quote  #1 
No one is going to do it for you.
If something feels wrong, you know your body best.
Go to the doc and insist on checking out every pain that is concerning you.
If you want to follow the two-week rule, that is fine. If your pain is still there two weeks later, MAKE AN APPOINTMENT.

Mets caught early are easier to treat. Early detection - no matter what your stage - is essential.

You should be getting follow-ups on a regular basis- at least every six months.

If you still have your breasts you should alternate mammos with MRIs every six months.... for example, in January get a mammo in June get a breast MRI.

You should have baseline:
Bone Scan
Pet/CT Scan
Abdominal/Pelvic CT scan

If you are on Tamoxifen you should be getting U/S on a regular basis including trans-vaginal U/S.

If you have an onc that says to you that it doesn't matter when you find mets because they are incurable, change oncs.

There are new treatments out there that can help stabilize mets and in some cases, return you to NED.

The following things need to be considered:
Exercise 4-5 times a week for at least a half hour reduces risk of recurrence by 50%

Diet that is plant based, low fat and contains very little muscle meats improves survival

Stay on your AI. If you are having side effects- don't stop the drug- speak to your doc about management.

Vitamin D. You need at minimum 1,200 IUs a day

New and Exciting: Ask your onc about prophy Zometa. Studies have shown that metastatic stem cells start in the bone marrow- bi-annual infusions of Zometa can protect you from those stem cells from growing.

FIGHT FOR YOUR FUTURE HEALTH.
No one will do it for you.
Be a pain!!


__________________


WE WILL PREVAIL





csp

Moderator
Registered:
Posts: 1,940
Reply with quote  #2 
 Gina this is so true.
I am not bashing professionals but you don't always get what you need. Research, speak up and ask questions  . Insurance companies play a huge part in what type of treatment and follow up is received.  If you are persistent and don't back down you can get what you need. If your doctor doesn't like it, I say you need a new doctor.
 
Lv&Hgs,
Carrie
  

__________________
courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
~maryanne radmacher
snhb

Goddess
Registered:
Posts: 105
Reply with quote  #3 
This is absolutely true, you MUST be your own advocate.  You must fight for yourself until you are comfortable with the care you are receiving. 
It's unfortunate that we must act this way, especially when you are not feeling well and dealing with difficult doctor's or insurance companies is the LAST thing we need, but it has to be done.
Case in point.  I was scheduled for a breast MRI, and received a notice from my insurance company, that "my surgery and diagnosis was not extensive enough to "qualify" me for a diagnostic MRI!! (my dx: Stage IIIA, lumpectomy, mastectomy, chemo, rads)
Well, needless to say, I got on the phone ASAP to speak (go ballistic) with the insurance company.  When I got through and gave my name, I was immediately put through to a supervisor, who started out our conversation with an apology to me.  She then went on to say that my surgeon had called her personally on my behalf to get me approved, and that she had asked them to "make sure that I did not receive that rejection letter, but that the mailing had already gone out. I learned two lessons from this experience : 1) My breast surgeon is a great doctor, and 2) I have to fight for my rights. 


CurlyGirly

Avatar / Picture

explorer
Registered:
Posts: 10
Reply with quote  #4 
Gina,

I was dx'd in Jan/03 (stage 2,2+ nodes, er/pr+, her/2+). I had a mastectomy and CEF chemo. I was on tamox for 3 1/2 years and on aromasin since. I've had no scans since before chemo. I get a mamo yearly and see the breast surgeon who does a breast exam. I had blood work done every 6 months except when I was in a Tykerb trial and saw him every 3 months. Now I am to see him yearly. When I asked about scans he explained that we don't go looking for cancer and that finding mets early makes no difference it the outcome, that treatment was only for relieving symptoms. Have you been told differently? Should I be changing oncologists?

Jan


Karen1956

Goddess Forever
Registered:
Posts: 1,218
Reply with quote  #5 
Jan - I am only going on 3 years since Dx.  I love my onc.  He only does scans if the patient asks for them or if indicated  such as any pain longer than 2 weeks. He does blood work at each appt (I am still at 3 months), physical exam and detailed history.  Onc does not say that there is no difference in finding mets early or not, but that a month or two would not change things significantly - that is why he always says to call for any pain greater than two weeks.
I would say that if you would feel better with scans, then ask you onc if he is willing to support you in doing so - this would be important for insurance purposes. 
I think the other thing to ask yourself, is do you feel comfortable with what onc is doing for you and telling you.  You could always get a second opinion.
But Gina knows so much more than me...Just thought I would share. 
StacyL

Avatar / Picture

Goddess Forever
Registered:
Posts: 263
Reply with quote  #6 
AMEN to that. I am learning to speak up more all the time. I ask tons of questions. I read up whenever I get the chance. I have all of you who are so informative. My Onc. says she loves that I do all of this. I bring in printouts of info from the Internet to her sometimes. I'm not so sure she loves that. But, I am my own advocate and if I have questions, even if it seems I'm second guessing her, I ask. No one else will.

bac10

Avatar / Picture

Goddess Forever
Registered:
Posts: 203
Reply with quote  #7 
I was diagnosed in August of 2007, went through chemo and 7 weeks of radiation.  I finished in March of 2008.  My breast was so sore and painful all of the time (still is) that I just wanted to cry.  None of my doctors (surgeon, oncologist, rads or family doctor) wanted to listen to me or answer any questions.  A cough or a sneeze would literally cause me to double over with pain in my breast and rib area.   A friend recommended that I go to the Mayo Clinic five hours from here because they have a breast cancer center there.  I started going in September and have gotten the best care I think I could get anywhere.  Dr. Stephanie Hines is my doctor there and after spending an entire hour with me on the first visit she asked if I would mind having another mammogram there (I had one here in July that was clear).  I told her yes and she ordered it for that afternoon.  I ended up having a mammo and then a compression mammo to check out a spot.  The radiologist recommended an MRI and is 90% sure that it's a lymph node but it's at the spot where the original tumor was.   Dr. Hines also ordered a chest CT where they found spots on each of my lungs and one on my adrenal gland.  I asked for a break during the holidays and will go back next week for further testing.  I am so, so glad that I followed my doubts with the doctors here and found someone else to take care of me.  I've always been very pro-active with my health care and felt like I was beating my head against the wall with the docs here.

My surgeon was happy to give my all of my records as was the radiation oncologist and my family doctor.  The oncologist was furious with me for getting a second opinion without talking to him first.  He called me at home and chewed me out for disrespecting him.  He claims that I never told him about any pain in my breast and that it wouldn't be necessary for me to ever come back to his office again.  When I did finally get copies of my records...it's in his notes..."patient complains of breast pain".   It just wasn't worth it to me to even point it out to him. 

Dr. Hines thinks the pain is just from the trauma to my breast...nerves were cut, nerves were irritated and the radiation caused some problems.  It will just take time to heal. 

I have now had two mammograms, an MRI, a chest CT, a sinus CT (another whole story...sense of smell was damaged by chemo) and a full body bone scan at a hospital I trust and under the care of a doctor I trust.  She's willing to listen to me. 

__________________
Bev

nosurrender

Avatar / Picture

Moderator
Registered:
Posts: 7,476
Reply with quote  #8 
Bev! My gosh- your old ONC- SHAME ON HIM!!!
I am so glad you followed your gut and got proper care.
We are left with all sorts of nerve damage and bruising and even chemo-arthritis not to mention rad damage....
You were so right to do what you did. Prayers are going out to you that all comes out OK. That old onc needs a whooping.

Jan,
Many oncs believe as yours does. However, it makes no sense to me and I am very happy I have a proactive medical team. It is not true that once you have mets that is it so why bother getting scanned. In the case of Bone Mets- they are so highly treatable that if you catch them early they can be eliminated with the latest in therapy available today. A small metastatic tumor found on a lung or lymph node is more successfully treated than 20 tumors found too late.
Sometimes you have to be the squeeky wheel. Fight for scans. If anything, it will give you peace of mind when you know for SURE you are totally NED.

Big hugs to all,
g


__________________


WE WILL PREVAIL





nosurrender

Avatar / Picture

Moderator
Registered:
Posts: 7,476
Reply with quote  #9 
A gentle reminder! Bump

__________________


WE WILL PREVAIL





onecent

Avatar / Picture

Goddess
Registered:
Posts: 158
Reply with quote  #10 
I need to learn how to be my own advocate in life and not just in my medical life.
I am fearful of the future because of finances bringing us down.
Thank you No surrender for being such a positive force.
Warm regards,
Pen

__________________
I believe
Karen1956

Goddess Forever
Registered:
Posts: 1,218
Reply with quote  #11 

Penny...I hear you...these are such hard times...having cancer s***** and then to have to worry about the financial just double s****.  Just makes you want to bury you head in the sand...but that does not accomplish anythings...you are so right...advocacy...stand up for yourselfs...but it is a skill to be learned/practiced and one that I still need to work on.Sending you hugs.  Karen

onecent

Avatar / Picture

Goddess
Registered:
Posts: 158
Reply with quote  #12 
yes Karen, exactly my point.
We can't even ask for help from our folks because they have lost all of their savings. I wish I was in the position to help them- not the other way around.
I am worried not just for our family future, but for the country's future.
Blessings to you,
Pen

__________________
I believe
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.