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HOPE

kamcat1962's picture
kamcat1962
Posts: 40
Joined: Mar 2013

Dear Sisters and Brothers,

How is it that sometimes hope makes us so naive? I was diagnosed in 2008 with Stage 2b breast cancer. I am not going to go through all the gorey details of my fight with the disease my first time around but suffice it to say I thought I was pretty knowledgeable about the disease and all the lingo.  I had so much hope that it was gone, done, never to be seen or heard of again.  My doctors said it to me at every check up, "Cathy you don't have to worry you are disease free and I know you are going to stay that way for the rest of your life.". So, here I was secure in my bubble of hope, happiness and no cancer. It took only 3 1/2 years for that bubble to burst. The monster was back and from the look on my doctors faces I felt it wasn't good. They said "it's only a reoccurence in the lymph nodes on the chest wall of your original cancer." So I said okay more chemo and we will be back in remission right? No remission, very aggressive we just have to contain it so you can have more time. No remission. What did that mean?  More time. How much more time? Don't know. Needless to say here I am over a year later with 3 surgeries (pain pump), 7 different chemos, 13 radiation tx and 3 hospitalizations under my belt.  What did I get from all that? Metastises. And not to the bones, or lungs. or liver or brain(oh no not brain I don't have one of them) LOL. No it went to my skin.  Your skin is the largest organ on your body. Breast cancer on the skin is rare and ugly and very, very scary. But I still had my hope. Why? Because all this time I still thought I had Stage 2 breast cancer. Our healthcare system gives you a sort of"discharge paper" everytime you see a doctor or have a procedure. It has your allergies, medcations, upcoming tests and your present health status.  Since July 2012 when the cancer had mets to my skin  up until 2 months ago my health status said "Stage 2 breast cancer". Evidently someone forgot or just plain neglected to change it and my Onco never said anything either. I guess he just assumed I knew. I didn't know. I didn't ask the right questions and in some cases I didn't ask any at all. Well that changed somewhat when the Palliative Medicine DR came to see me when I started the chemo I am on now. I was on my 1st tx and she said that I should start thinking about hospice if and when this chemo didn't work. I started to cry and I asked her to go away. And my hope went out the door with her. My chest felt like it was caving in. How can I be thinking of hospice when I am only Stage 2? Luckily I saw my grief therapist that week and I told her what had happened.  She gave me good talking to about being so naive and afraid.She told me that I really needed to start asking the tough and ugly questions. I didn't see my onco for 3 weeks so I made an appt with the Palliative Med DR and I gave her "what for" because she obviously didn't notice the health status on my chart and also for the way she approached the hospice issue.  She apologized very sincerely and told me that yes, I was Stage IV now. Well the world did not cave in and neither did my chest.  My hope is still there and getting stronger every day.  This new chemo (kadcyla) is working at least on the breast cancer on my skin. I get my  PET scan on Tues the 22ndand then DR on the 23rd and hope is coming with me and holding my hand the whole way. Promise yourself when you start ths journey of breast cancer that you ask the right  questions and never let anyone just assume you know what is going on. Don't let fear, anger and yes, even hope make you blind to the truth of what is going on inside your body. Knowledge makes you stronger but hope makes you hopeful and doesn't let fear and anger steal your joy. And remember "MIracles Happen Every Day" Bless you, Cathy K.

New Flower
Posts: 3993
Joined: Aug 2009

Hi Cathy

I wish you good results  on 23d when you see your oncologist and continue holding your hope. I had mine today and my scan shows stable conditions. I was naive twicw First time, assum**** that breast cancer never comes before kate fifties.  I was shocked to be diagnosed at 46. I aslo thought I was cured, however being on this board taught me otherwise. My first oncologist, a very famous in breast cancer field told me that I will live until 90 when I was 48.  Two years later I had a progression to my bones and become stage IV. It is a difficult fight physically and emotionally and hope always should be our friend.

Hugs to you

RozHopkins
Posts: 464
Joined: Dec 2010

First few times I saw my Oncologist he talked to be for a while when I realized he hadn't read my notes past the first page.  Thought I had had lumpectomy, which never happened had bilateral.  This happened two or three times..........

Like most of these professionals, very nice people but some are clueless, would never happen I feel if it were their partner in the patient chair.

Sorry your medical info was not clear and for your unwanted news.  You have one great attitude.  

If not too intruding may I ask of your symptoms leading up to this last diagnosis?  

 

Head up.

kamcat1962's picture
kamcat1962
Posts: 40
Joined: Mar 2013

I had progrssive pain in my right arm and shoulder began in feb or Mar 2012 and became excruciating by june.  Cancer had reoccurred in the lymph nodes of the rt brachialplexus (bundle of nerves in shoulder area.). drs would not even do any testing before the pain got horrible.  Inside I knew the cancer was back. I even told my grief therapist and she told me that many of her cancer patients know that their cancer is back way before the doctors do. I have learned my lesson and from now on I intend to be a total pain in the arse.  I am going to ask any and every question that I have because I am my own advocate and I do not intend to be misled again.  I have a lot to live for and many people to thank for the life I already have been given. I will just keep on hoping and praying.  God Bless all of those who have done the same for me. Prayers and hope for you too.  Bless you, Cathy K.

hope67's picture
hope67
Posts: 165
Joined: Apr 2013

you are so right, we have to be advocates for ourselves and we should never just let it go. Because nobody else is. I am so sorry about bad news and the way you got it. Please keep hope and faith.

Hugs, Carmen

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

I am so sorry to read your story however it is a lesson to us all - fear & ignorance have NO place in our lives - we must be our Own advocates. I sort of sailed thru my 1st ca dx in a kind of 'blissful' ignorance - no longer tho. I am on the case now with all of my follow ups, treatments etc & feel far less fearful because of it. I am not naive enough to believe I am 'cured' like most family & friends like to believe! But I know I am living with what I have & doing pretty well but will face up to any new dx with knowledge (& no real surprise!!!) AND there is always hope & I am a FIRM believer that whilst having a positve mental attitude can't cure you it can go an awful looooooooooooong way to helping & making life just that much easier. 

Sending hugs and positive thoughts :). 

Michelle x

CypressCynthia's picture
CypressCynthia
Posts: 3956
Joined: Oct 2009

I was a little different.  I always thought, as a healthcare worker, that I wanted just the facts.  Well, from the beginning, I have asked lots of questions and gotten a lot of tough answers.  

But I also learned a lesson.  We all need hope.  Not hope that is based on ignorance and will hurt or deceive us, but hope that will keep us moving forward, active in particpation with our healthcare team, and fighting as hard as we can.  

Thank you so much for your honest and imporatnt post!  I believe you have helped many of us today.

sandra4611's picture
sandra4611
Posts: 121
Joined: Sep 2013

You are so right about hope, no matter what your stage. You and the others fighting so hard are such an inspiration.

On "another website devoted to breast cancer" the thread was about what to do after DCIS diagnosis. I put in my two cents in favor of mastectomy (for DCIS, intermediate grade, largest tumor 1.8 cm & non invasive) and added that I'd chosen to have a double (6 wks prior) because I couldn't deal with worry that the lumpectomy wouldn't show clear margins or that cancer would show up in the other breast. I have a large anuerysm in the ascending aorta of my heart that will require open heart surgery, so I was fearful of the damage radiation would do to my heart and knew rads would be prescribed after a lumpectomy. I also had a moderate brain stem stroke at the beginning of the year, a month before the aneurysm diagnosis, and was still in rehab so breast cancer was my third strike in 2013.

I posted that I'd just come from meeting my oncologist and hearing her say that I did not need chemo, rads, or hormone therapy so I was happy, happy, happy. (At least one out of those three strikes was behind me.) The pathologist's report after the BMX showed there WAS cancer in what we thought was the "good" side, but it was a different kind (LCIS, intermediate grade) was small & not invasive. She said that there was always a chance (1-2%) of developing some other kind of cancer in the tiny bit of breast tissue left after the BMX, but it would not be DCIS or LCIS because those start in ducts and lobules...and I had none of those anymore. Come back in 6 months.

The online replies knocked the wind out of me. One said my oncologist was technically right but actually wrong. Many others jumped on the bandwagon, posting studies and opinions and vague references to someone in years past with my same diagnosis who got DCIS and LCIS again. One went on to paint a picture that it only took one single escaped cell from a duct or lobule that could grow and that I should have asked for radiation and chemo. I spoke to my oncologist and she assurred me that I had done the right thing and there was no need for further treatment. She expressed anger at anonymous women on websites who don't understand the difference between scare tactics and support. She declared some of the "studies" as invalid and showed me algorhythms from Mayo, MD Anderson, and Johns Hopkins that showed her recommendations were exactly the same as theirs.

I posted again and said their replies had upset me and my oncologist had reasurred me. One said it was too early in my recovery to be able to deal with the truth so I should stay away for awhile. Others said it was their duty to give me all available information and again posted excerpts from opinions by others which contradicted my doctor's prognosis for me. I asked these women what exactly was I supposed to do with their "information." Worry the rest of my life? Keep looking for an oncologist who will give me rads? Stop trusting my health care team? What was the point of  them destroying my confidence and my hope that I didn't have to worry about my kinds of cancer coming back? Even at my stage, which cannot even begin to be compared with the rest of you, hope is necessary. That thread is something I avoid now. I realize now how fragile hope is.

I admire you all so much and wish my good thoughts and prayers could ease your pain for even one second.

 

disneyfan2008
Posts: 5340
Joined: Oct 2010

So sorry you are going through this....my thoughts are with you..

Denise

kmenurse's picture
kmenurse
Posts: 223
Joined: Apr 2013

Hope is the key to our strength and happiness no matter the diagnosis... with out hope then we have lost the battle.  God or your higher power is walking beside you take his hand he will guide you.   God Bless Kathy E

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