Stage v- a hard to swallow fact

yanyan · 01-07-2013, 01:55 PM

After months waiting I finally got to see the breast surgeon hoping to have my local skin recurrence removed- was told that I am clinically stage v because cancer has metestasized to skin even though it is local.

It came as a shock and I have to admit its very disheartening. Living with the same symptoms and diseases seem thinking I am stage 3 feels so much better than being told I am stage v. Would I rather not know it? Or by knowing it I will be even more determined to take better care of this freaking cancer.

Many things came up to my mind when I left the surgeons office. But mostly came to mind was I am dying and I need to make arrangements ASAP. Then I realized nothing has really changed except that I was just given a clinical dx. I have to say that the surgeon and nurse are great people.

I wish I had the same surgeon in the beginning but I couldn't afford it while I had HMO with access to only preferred provider. I felt I should not have rushed for reconstruction I should have had a non skin sparing mastectomy. But again I might have had a distant mets had I not been on the medication for recurrence. There are just too many ifs- water under the bridge.

I don't want to share the news with anyone but you my her2 sisters. Only YOU can understand my fear and anger and sorrow. How did you get beyond the stage v dx and move on with a full life- working full time and raising young kids. My 6 year old asked yesterday if I am feeling better. She knows I have an booboo and I hate to let know the big C word.

I can't tell my mom and bf either. It doesnt make much difference but to depress them. I am just thankful that you guys are here . So I am moving on with electro radiation for possible residue tumor cells as my surgeon does not think surgery will benefit me. I still don't understand why it can't be treated the same way as IBC since they are basically the same- diseases in lymphatic system.

Love to you all!

StephN · 01-07-2013, 02:30 PM

Dear Yanyan -

I have not heard of stage V (five), so I think you must mean stage IV - or four.

Like you said, it was a rude sort of wake up call to realize that skin mets ARE mets. There are some here who are doing very well against their skin mets.

Try starting a new topic/thread on this particular subject and hopefully a discussion will take place from others with this same problem.

It IS so hard to keep this cancer news to ourselves, as it can be rather paralyzing. To change perspective should put you in fighting mode to eradicate that "booboo." (I had to tell my little niece the same thing as she wanted to hug me and I had bandages on my surgery site.)

Jen · 01-07-2013, 02:34 PM

Yanyan,
I have never been diagnosed with cancer I just lost my Mom Sheila on Dec 10, 2012. Sheila lived for almost 10 years being diagnosed at stage IV. Hopefully someday we will find a cure. NOBODY not you or I or anyone else is guarenteed tomorrow. So my advice to you would be the same as to anyone else live your life do the things you want to do and say the things you need to say to those whom you love and love you.

BonnieR · 01-07-2013, 03:15 PM

Yanyan, "dont look back, we're not going that way"
You got some wise words from Jen. I remember when I was diagnosed I thought "well now I know what I am going to die from"..But I am fortunate to be NED at the moment. And also realize that I could die of any number of things at any time. Sort of depressing but liberating at the same time. We all only have today. So live in it, embrace it, enjoy it.
Keep the faith.

tricia keegan · 01-07-2013, 03:17 PM

Yanyan I'm so sorry this was such a shock for you as it would be for any of us if unprepared, I had Bowens disease on my leg which was treated sucessfully and caught early enough that it didn't go on to full blown cancer but would have if left untreated.
This was a shock for me so can only imagine how you felt, but in saying that over the seven years I've posted here I've seen so many stage iv friends not only survive but go on to become NED and lead full lives so I hope this reassure's you and the shock will wear off. As you say, all thats changed really is you've received a clinical dx, you are more than a number or stage and we all react differently so go with it today and be kind to yourself but know tomorrow will be better. x

KsGal · 01-07-2013, 05:15 PM

Im so sorry that was presented to you like that. You are still the same person in the same condition with the same reasons for optimism that you were before the surgeon chose to put those words out there. So try not to hear those words in the back of your mind. I have been stage IV basically from diagnosis, and outside of the time I did the actual chemotherapy for my liver, my life has been normal. My family life with my children and everything seemed to kind of gravitate back to baseline. Now we are just living with a chronic condition, and have to do all we can to take care of ourselves. Lots of hugs and prayers and positive energy your way...I know you don't want to stress or depress your family by sharing with them, but remember that you can't always be the strong one carrying everyone else. They love you and want to be there for you too.

Bunty · 01-07-2013, 06:15 PM

Yanyan, so sorry to read your post. You are right by coming to this forum, as there are so many of us here who do understand the fear and uncertainty you are feeling right now at the beginning of this new chapter. But do take hope from the realisation that you can still have a relatively normal life while Stage IV. I know it may sound strange, but one good thing is that your medical team will be far more vigilent now, and if anything does change, you'll be dealing with it much quicker.

I've been living well (thank God) with Stage IV for over 5 years now.

Best wishes
Marie

Jen · 01-07-2013, 06:25 PM

http://www.amoena.com/NR/rdonlyres/9...Issue8_Low.pdf
Life is good

Sheila Rawlins
Age 57
Diagnosis 2002
Recurrence 2003

Just when she thought
she was moving on—the
day of her last fill-up for
a tissue expander on her
left side—nurse Sheila
Rawlins felt a lump in her
neck. “I must be having
a reaction to the tissue
expander,” she thought.
“I’ll show the doctor
when I get there. I
wasn’t worried, I felt
great, and was about to
get the ‘new old me’
back.”
For her, the news
that the cancer had
metastasized to her lymph nodes was just as upsetting as
the first diagnosis had been, a year earlier. “How can this
be happening to me…again? Am I going to die?” she
wondered. It was October—Breast Cancer Awareness
month. “Everything was a sea of pink, and I was
drowning in it,” she remembers. Oftentimes, patients
in their second diagnosis can feel left out of all the
“surviving and thriving” excitement of October activities.
Her doctors started her on Herceptin immediately,
which was still fairly new in 2003. Sheila was grateful
because, unlike chemo, Herceptin doesn’t cause nausea
or hair loss—she hated the thought of losing her kneelength
hair. She says, “Actually other than the time it
takes to be administered and a runny nose and eyes, it’s
a walk in the park… but my life was so different, starting
then. I would need constant treatments and medication
the rest of my life. Before, life revolved around fun and
work and children and grandchildren, and now the focus
is survival.”
But survive she has, with the decision to focus on
what she has gained, not what she has lost. “I have
gained many friends, women who are fighting this every
day. I have gained knowledge and power over this
disease…I have gained a new appreciation for things that
I would have never known, I have gained strength to be
positive on this journey, and to help others who may be
on this road.” Finally, another spread to her supraclavicular
nodes required chemotherapy in 2006: Xeloda, and when
that didn’t work, Taxol and Avastin. “I have been blessed
with the most amazing chemo nurse—anyone who can
make you smile through chemo is an angel. And I have
gotten used to not having much hair.”
Each year for the last three, Sheila has traveled to
San Antonio, Texas, for the Breast Cancer Symposium—
a gathering of top oncologists from all over the world. Her
own medical background fuels this desire for information.
“I gain knowledge there about the trials and new treatments,
and I am then able to use this knowledge in my own
care, and help others in my support groups to empower
themselves all they can.”
“As with any disease, I still worry about every ache
and pain, the ifs and whys. But in the end, the most
important thing I have gained is acceptance. Recent CTs
showed some tumor shrinkage in the chest nodes. This is
great! I am getting hair! And eyebrows! This is the new

me, and I am a survivor!”
------------------------------------------------------------------
That is how Sheila felt "in her own words" after getting the Dx of stage 4. She had a reoccurance 1 year after her initial diagnosis of her2+ breast cancer. Mom saw her cancer Dx as a blessing in disguise that helped her to see life through a new set of eyes. I hope (My Mom)Sheila's words help you on your journey which is NOT over. I sincerely hope I have helped (in some way) by sharing Sheila's message. Although I have not been Dx with cancer myself I feel the need to contribute to this site and help others just like Sheila would do IF she were here. All of my posts on here are made with love as I feel you guys are family like you were to my mom Sheila.

Jen

Lori R · 01-07-2013, 07:02 PM

Dear Yanyan,
I am so proud of you for recognizing the power of "labels" and how meaningless they are.

Even as a 5 1/2 year IV survivor that has actively battled this disease, I HAVE benefited by the research results as the years have ticked by. It has been a life very much worth living and I still have hope that between TDM-1 and Perjeta, there are more options.

Hang in there and don't accept anyone's label if it does not empower you!!!!

Lori

Emy · 01-07-2013, 07:38 PM

yanYan, you are so young..stay strong and fight.....
Bonnie..I was also misdiagnosed with lung cancer and had my lower right lobe of my lung removed.....
Lori...How are you managing with liver mets? I see a liver surgeon tomorrow....Tykerb, herceptin and Faslodex not working...liver met doubled in size and tumor markers rising..

KDR · 01-07-2013, 07:49 PM

Well, so much for staging. I don't believe in it, and I never will. There's a false sense of security in it: I just delivered this humble opinion to 100 doctors or scientists at a conference. Additionally, what is a Stage IV diagnosis supposed to except but a patient in the mindset of losing? I do believe in affliction. You are afflicted by cancer or you are not.

Stage IV is not a death sentence. There are plenty of people out there who have beaten this, and I plan to be one of them. If I'm not, I'm not.

You have not fallen off the cliff. Pick yourself up, dust yourself off and remember Jackie's father's words: no rest for the daughter of a soldier (that is not verbatim).

Sent with care,
Karen

yanyan · 01-07-2013, 08:03 PM

Thank you very much for your kind words and wishes! So much hope I can get just by reading your signatures but it definitely makes a difference when you are here telling me in your own words that you are a brave warrior. My mom and bf were relieved to hear I don't have to have an aggressive surgery. All I told them is that my current treatment is effective and I need electron radiation to take care of the residual tumor cells if any. I didn't have the heart to tell them about my clinical dx. So everyone was happy and we had a good lunch together. I have decided not to share the news unless I absolutely have to. I don't want to see my loved ones suffer from worries that would only have negative impact on my emotions.

I don't know if I still want to work full time or focus on my healing. I guess I will wait after the radiation. I am thankful to all of you awesome ladies here. Thank you !!!

europa · 01-07-2013, 08:16 PM

Oh Yanyan, you are in my prayers. I know you think that your loved ones should be spared, I can totally understand. I thought the same of my mother. I just didn't want to worry her. well, turns out she is a rock and has been my guiding light when I myself couldn't see the light at the end of the tunnel. She helped me fight.
I hope you don't try and take this on by yourself. You have people that love you and want to be there for you, let them.

Sending you tons of love from one 30+ year old to another.

dchips1 · 01-07-2013, 10:02 PM

keep fighting, It is hard to hear the C word. This cancer journey is a path which we are on and somedays the path is a little rough, but with family and friends(including all the posters here), you will be able to Live and adjust, to all the appointments, and get back to living your life.

One of the things I have done as well as others is if you can't or don't want to work is go on Social security disability, once you are stage 4 basically you are automatically eligible and your child gets half the amount, that you get. After eligibility I believe you can still do part time work if you need to. after 2 years you are eligible for medicare.you can fill out app online or call them.

Prayers of peace and healing,
Darita mom to 6 five between the ages of 21-26, a 12 yr old, 1 6 yr old grandson. God, good dr's and medicine has let me see 5 graduations, a grandson, and still aiming for 2018 for 12yr old HS graduation, more grandkids, and continued healing

Mtngrl · 01-08-2013, 11:52 AM

I agree with what the other wise ones have said. Especially with HER-2, staging offers very little security or peace of mind to those first diagnosed at earlier stages, and, thanks to recent breakthroughs, more and more people are living full, healthy, happy lives after a stage 4 diagnosis. Some researchers are even talking in terms of cure.

It's a tough pill to swallow, indeed, but it can be swallowed. The human spirit is amazingly resilient. Ongoing treatment is my "new normal" now, and I feel and look healthy and hearty.

Everyone who ever lived or is alive now has a 100% mortality rate. As one wag put it, "life is a sexually transmitted condition that is invariably fatal." At this point it's more likely than not that I will die of breast cancer, but I don't know that for sure, and I don't know when.

Wholeness is not about physical condition. It's a state of mind/spirit/heart AND body.

Sorry you "graduated" to the stage 4 club, but there are some pretty awesome members in it.

Lien · 01-08-2013, 01:09 PM

Cancer is many diseases lumped together under the same label. As are mets. Generally speaking, some live a good life for over a decade, some die soon after the Stage 4 diagnosis. Skin mets are not directly life threatening, and often respond well to treatment. Over the past 9 years I have "met" women online who survived and thrived after they were told there life expectancy was limited. Some have been NED for over 13 years. For some cancer has become a chronic disease that calls for treatment, just like diabetes or a heart condition do. These chronic illnesses may or may not cause one's death, eventually. My father just lost a friend to pneumonia, who was diagnosed with lung mets 10 years ago. He had been NED for 9 years, and died from an infection he got after he broke his hip. He was 81. He never thought he would beat his cancer, but he did.

So what I'm trying to tell you, is that doctors just don't know. They make a guess, based on other people's cancer experience and they present it as a fact. But it isn't. The only fact you have to deal with, is the fact that you need some kind of treatment for a disease that is chronic for now. It may or may not kill you eventually, but there's no-one in the whole wide world who can tell you for certain.

So live your life, love your loved ones, and find someone you can talk to about your cancer. Someone who doesn't know you so well, so you won't hurt them by telling them the truth, telling them about your fears. The hardest thing for me was telling my dad. My brother had died at 18, my mother had died from cancer 4 years previously, he was just recuperating from treatment for his prostate cancer, and his younger brother had died from cancer when he was 20. So much cancer in his life. But I needed to tell my kids, because they were more afraid of what I wasn't saying, and it wouldn't be fair to forbid them to talk to Grandpa about it. So I told him. He dealt with it much better than I expected. And I'm still here!

Love

Jacqueline

ElaineM · 01-08-2013, 03:39 PM

Cancer staging is a clinician's way of organizing things into categories. May people live for years and years with a stage 4 (or 5) diagnosis if that is how your clinicians identify it You might want to discuss the situation with your oncologist or find a good dermatologist who can work with your oncologist and your surgeon.
Take care.

SoCalGal · 01-08-2013, 05:10 PM

Jacqueline's words: But I needed to tell my kids, because they were more afraid of what I wasn't saying, and it wouldn't be fair to forbid them to talk to Grandpa about it. So I told him. He dealt with it much better than I expected. And I'm still here!

Can't agree more...kids, friends, family fear the unspoken much more than the spoken. People want to help and to support you. As a long time survivor, with kids who were 6 & 8 at my original diagnosis, I had a method for delivering news...when I first hear any news I need some time to hatch a plan and calm down. When I deliver bad news to my kids (still), it is always along with my plan and my hope. Everyone takes their lead from me, so when I am hopeful it allows their hope to be present as well. I share my fears and terror with my inner circle of girlfriends, with my man and sometimes here, online. But not so much with my kids or family. However you deal, be gentle and easy on yourself. And as Bonnie says, Keep the Faith!

Pray · 01-08-2013, 10:23 PM

Yan Yan, I'm so sorry, That is one of the many blessings of this site. I also am unable to share with my friends and family about this journey and yet we still need to vent and know someone is listening and cares. Please know you are in my prayers. Peace my friend, Nancy

Joanne S · 01-08-2013, 10:55 PM

I always tell my daughters everything. They were 16 and 21 years old at the time of my initital diagnosis. I wait 5 days until the initial shock has worn off some and I've got better handle of my emotions. I tell them I got bad news and explain all the facts to them honestly. Of course, as a mom, I want to protect them, so I soften it up just a bit so it's just not so traumatic and scary for them. I actually feel some anxiety relief once they know.

I understand why staging is used by the medical professionals, but I quit putting much weight on staging, statistics and survival times, etc. I used to wonder where I fit in those risk statistics? Will I be in the 30%? or in the 70%.... No more, no matter what the statistics say, I see my changes are all 50/50---either I will ... or I won't... Any worrying I do isn't gonna help or benefit my chances, and worrying just makes me feel worse. We all know, it has a negative effect on our health. Of course I have times when I get concerned and blue, I remind myself of the serenity prayer and try to live each day one day at at time. I'm thankful for where I am and what I have - it could be so much worse. The following is a pledge I recently made to myself:

I will live sincerely.

I will learn from each person and each day on my journey
and will share ideas and wisdom from my own experiences.

With a grateful spirit, I will acknowledge my need for others
and will in turn be loving and generous,
remembering that every member of a community plays a unique role.

I will remain strong in my convictions
while keeping an open mind to perspectives beyond myself.

Courageously, I will respect each movement of my heart,
through fear and joy, grief and peace.

I will cultivate my passions with delight
and also take time for honest introspection.

I will love the person I am today
while constantly striving towards my best self.

I will keep a healthy balance between the rewards of discipline
and the growth and wonder that spontaneity brings.

I will acknowledge both the marvel and the limitations of my body
and respectfully take care of it the best I can.

Accepting the reality that there are circumstances I cannot change,
I will seize my power to actively change that which I can control
with hope and creativity.

I commit to living each chapter of my story:
honoring the lessons and gifts of my past,
fully participating in the fleeting beauty of the present,
and bravely walking towards the unknowns of my future.

Knowing that life is an enduring but glorious struggle,
I pledge to live each day with purpose.

I will live sincerely.
http://thelivesincerelyproject.com/pledge/