How did you feel being told "again"

tos · April 2007

I was just diagnosed for the second time in Feb of this year and have found it to be alot harder or so it seems for me to handle. I do realize that I am also dealing w/my daughter's dx and chose to go thru a bilateral mastectomy this time so more issues than before.
How did it effect the rest of you?

nosurrender · April 2007

Good question Pam.

I felt mad but not surprised. I have been afraid of this since my first diagnosis and it finally came. I KNOW TOO MUCH NOW. And that makes it worse.
I know what to expect and it sucks.

I feel a sense of relief since my bilateral... but then my path was so bad I spiral back to dread and panic.

All the old fears of chemo have resurfaced because I had such a bad reaction to it and my life is made up of living from the side effects FROM it.

When I think about adding more chemo-induced side effects to the rest of my life I am not very brave at all.

Today is not a good day. My port is f-d up, I have heart problems from my chemo the first time and now they want me on Adriamycin next weds...all this in light of my mom's "heart event" last night.

I am sure glad I have you all to talk to!

tos · April 2007

Gina maybe w/all the changes they've made w/treatments and ways for it to be given plus new meds hopefully it won't be as bad for you this time, crappy though it is that you even have to go thru it again.
Are you having any swelling around your port area? Any redness or something unusual?
I hope your mom is doing better today.
I do know the second time I am more educated so that is a good thing but sometimes I'm not so sure!
I knew this was coming, could tell last fall in my subconcious it would be back soon, how weird.
Hugs,

nosurrender · April 2007

Pam, I had predicted it too. My Gyn reminded me of that. It is almost like we can smell the Beast coming!

Jackson · April 2007

I wasn't totally surprised but I was frustrated. I had just finished up radiation on my left, original side and thought I was done with the whole thing.
I orignally was diagnosed at stage 3 and knew I was at high risk for recurrance but I found cancer in my right breast less than a month after I finished up my treatment so I didn't really get much of a break. I can't seem to get away from it.
And my surgeon and onc disagree on whether this was a mets from the original or a new cancer so I don't even know if I'm stage 3 or 4. I feel like I'm hanging somewhere in between. Mostly I'm just tired of going to the dr. and taking drugs.

tos · April 2007

Jackson, bless your heart, that is really a bummer finding another cancer so soon after your rads.
I had IDC in rt side and then last month was dx w/IDC on the left side so had a bilateral mastectomy.
My surgeon says it is a new primary but I wonder about this since my path is the same, triple neg.
I don't understand how they know if it is mets, recurrance or a new primary, anybody know?
I have read conflicting info on whether c will jump to the other breast, some say yes, others no.
I really hope your stage doesn't change for you, will you find out soon?
I can only imagine how sick you are of doc's and drugs, I'm getting pretty tired of it too but we've got to get well.

Jackson · April 2007

Thanks Pam.
My pathology on my second diagnosis is different from my first. The first was ER+/Her2- and this new one is ER-/HER+.
My surgeon still thinks it's mets and that the pathology changed or that I had a "mixed bag" the first time around. My onc thinks this is a new primary and therefore potentially cureable. I have read that cancer doesn't usually jump from one breast to the other. Good luck to you.

roseg · April 2007

My husband is on round 3 with his cancer. It's not exactly a new cancer, it's more like continuing bouts with the second one.

He finds it easier to take. The first time was very emotional. This time it's more about, "do I have to lose my hair". I think for him it's become something to be expected and he'd just as soon not let it take over his life!

tos · April 2007

Rose I am so sorry your husband is struggling so w/his cancer and hope he is doing well as he can.
I have to admit the thought went thru my head early on, am I going to loose my hair again.
The second or third time we have an idea of what's going on and what to expect but that first time I was totally clueless.
My best to your hubby,

nosurrender · April 2007

Rose I never knew that about your husband. Hugs to you both! It is nice to hear a man worry about losing his hair. Two of my docs are bald and get mad at me when I bring up hair loss.

Jackson you have had a rough time. Interesting about your her2 status changing.

Pam, as far as I know, if it doesn't go farther than the breast and it has not spread it can be also referred to as "residual disease" and still considered non-metastatic.

Mine was a weird change. From someone who was so strongly 100 % er/pr- to go to strongly 100% LOBULAR and Er/pr +++ was a weird one.

My doc said I am fighting both cancers now because one can never be sure tripnegs are free and clear.

Right now, I just want to get through this chemo and put it behind me. I don't have any other shoes to drop so I guess I will be waiting for the other glove to drop??

((Hugs))

ferq · May 2007

I am so sorry that anyone here has to go through this at all. I was really terrified when dx again after 16 years ago. I had done so well back then & cancer didn't stay on my mind like it does now. I felt back to normal in no time after treatment then and no hair loss but this second time has been horrible for me mentally & physically. I wonder sometimes wonder if ignorance is bliss because 16 years ago doctors made the decisions and I didn't know as much about it. ((hugs)) and prayers for everyone.

tos · May 2007

Deb I'm sorry you too are going thru this again.
I have been having the same debate within myself this
time. The first time I was totally ignorant, now I'm more
informed and sometimes that can be so scary. Being dx again just freaked me out after over 4 yrs.
There must be a fine line there somewhere or maybe it's a mental thing to arrange in your head, I have no idea but just because I'm more informed I notice I still do not always handle this new dx very well, a sort of catch 22.

How are you doing Deb? Are you going thru treatments at this time?
Prayers that things get better for you.
Let us know how you are doing.

I see my Onc the 24th to discuss chemo treatment and I really dread it but I know it has to be done.

Toronto · May 2007

The second time has been easier emotionally, although much harder physically - due to the chemo which I didn't have on round 1. I know more about BC now, but if anything that was a calming influence.

The biggest difference between the first and second dianosis is my family circumstances: my marriage is in better shape, my kids are older (old enough be mostly independent), my parents died after the first and before the second so they were no longer a concern, our finances are in better order. In short I have better support now, and fewer responsibilities. I can focus mostly on myself this time.

tos · May 2007

Mke, I'm so sorry you have lost your parents in between dx.
You do bring up some good points that I need to remember to calm myself down like the kids being older, ours are out of the house now, of course still a worry but I can focus better on healing now w/fewer responsibilities.

What kind of chemo are you taking?

Toronto · May 2007

Thanks for the sympathy. It was of course sad that they died, but not tragic.

You're right, we never quit being worried about the kids, but the first time my youngest was still in grade school.
When I think about how I felt then my heart really goes out to these very young women and my situation doesn't seem quite so bad.

I had dose dense AC and taxol. I dreaded chemo too but the things I dreaded most weren't so bad. I'd heard about nausea but they do have great drugs for it these days. I have always been vain about my hair, but the loss of it was less traumatic that the idea of losing it. I bought a wig but rarely wore it. I had some hats, scarves and terrycloth turbans (your head gets cold). There are some really good hints on the chemotherapy board about products and things you can do to make it easier on yourself.

What I did have trouble with was plummeting blood counts, both white and red. When you talk to your onc you might want to ask about the pros and cons of a dose dense regimen if that is planned.

My chemo was followed by a year of herceptin which I am close to done with, so I am almost a graduate again.

tos · May 2007

Hi mke and thank you too for reminding me meds are better now and from what I read some of them do help to make treatments a bit easier to handle. I had the AC/Tax 4 yrs ago and had a pretty bad time. The hair loss was very hard but this time I know it is probably going to happen again and I'm already looking at something for my head. I figure I can deal w/the hair loss, it will come back but most importantly I have to fight for my life.
I was like you bought a wig the first time and wore it I think once and went to turbans. I'm just more comfortable in them but most of them were tossed out when I thought I was thru w/this spinning wheel!
You know I am not familiar w/the term dose dense although I see it everywhere. I need to look it up to see what exactly it means. Is that what you did w/your treatments?
That must have been very worrisome for you with the blood count problems, why did this happen?
That is wonderful you are almost done w/your herceptin and will soon be a graduate, everything crossed this will be your last time!
My 38yr old daughter was dx in 1/07 stage III and she will be using Herceptin. I hear it is great.

Toronto · May 2007

Dose dense just means that your chemo treatments are closer together - 2 weeks apart instead of 3. I did them pre-surgery, called neoadjuvant therapy. That way they could monitor the effect of the chemo on the tumour. I had a good response in terms of the tumour, it withered away.

The blood cell thing happens because your body doesn't have time to recover from the chemo before a new round comes. That's why people have neulasta or neupogen shots to boost their white blood cell production and sometimes transfusions or procrit shots to boost their red blood cells. It's not necessarily the best route for everyone.

It must be a great worry to you to have your daughter going through this too. Herceptin has shown remarkable results in studies so far, and the side effects are quite tolerable for most. The first dose I was a bit achey and feverish, but now I just have a runny nose and sometimes watery eyes.

ferq · May 2007

I did go through chemo both times. The first time I did CMF which was very easy for me and never lost my hair or felt sick. This time I did TC which was harder on my body. I still have after effects from it and have been finished with it since the end of Sept. My hair never did come back in normal so I still wear headcoverings. I am thinking about buying a human hair wig if it doesn't come back enough to go topless. I am on femara now and heard that can cause hair problems. I hope everyone had a nice Mother's Day. (((hugs)))

tos · May 2007

Mke now I realize what dose dense is thanks to you!
So my daughter did her AC every two weeks and is doing her Tax every week, where was my brain? Worrying about her I guess! She has been handling this very well except for getting tired the first week-end, her counts have been good recently and if she has to have bc atleast it has been tolerable for her.
I'm so glad you had a good response and the tumor withered away, good for you!
Thanks for the Herceptin info, I will pass that onto my daughter, I appreciate your writing back,

tos · May 2007

Deb, how long will you be on the femara? I have seen this med mentioned before but not familiar w/the side effects. So maybe when you finish your hair will be stronger?
I've not had CMF but I'm so glad atleast that time it was easy for you and you didn't loose your hair or feel sick?
Wow, well I don' know what chemo I will have this time, I just assume my hair will be gone but maybe not?
Where you positive for estrogen? I am a triple neg.

ferq · May 2007

Pam,
The femara is hormone therapy which sounds strange because it is for us ladies that are er/pr positive which I was both times. I'm not sure how long I will have to take it but probably for years. I never asked my onc how long and guess I should have..I wish you the best with your chemo and let me know when you start so I can check in on you. ((hugs))

tos · May 2007

Deb, thank you for telling me about femara. I sure hope you don't have to take it for years, maybe you should ask your Onc and hopefully your hair may become thicker once you are thru.
My best of luck to you, I hope you get this straightened out.

Hugs to you too!

nosurrender · May 2007

Pam,
I had CMF the first time and lost about 85% of my hair. THIS time I am on Adriamycin, got my head shaved and my hair is growing in! That is not supposed to happen!

I wonder if they are really giving me Adriamycin and not Hawaiian Punch in that syringe!

Love,g

tos · May 2007

Well G, my gosh so your hair is growing back in from Adriamycin? Well I'm so very happy for you your hair is coming back in, that is odd for A but maybe you better make sure it isn't Hawaiian Punch! lol
Wouldn't that be neat if all we needed was a can of Hawaiian punch, oh well, good for you and rest and take care of yourself, it's always uplifting to read your posts.

Hugs, Pam

nosurrender · May 2007

False alarm! THE STUBBLE IS FINALLY COMING OUT!

I am happy! i want this chemo to kick butt!!!

Love,
g

tos · May 2007

Yeaa, I am with you g! When it's coming out you feel like it's working, g will kick butt!
My duaghter has 3 Taxol to go out of 12 weekly and her hair has been peach fuzzy for a couple of weeks. It worries her cuz she feels like maybe the meds aren't working, we so understand. lol
Hugs and good to hear from you again,

Fllorik · June 2007

I am just tired of going to the doc and chemo sessions!

nosurrender · June 2007

I hear that Florik!!

Fllorik · June 2007

I forgot (chemo brain) I also am tired of being in pain and the fear of being in pain!

karenolena · July 2007

I was diagnosed again January 2007. This is my 4th time with cancer. 1988 cervicak 2001 tumor right breat lumpectomy and radiation. IBC 2003 chemo bilateral mastectomy and more chemo. I knew in fall of 2006 something was not right again. Several test revealed nothing. IBC is hard to diagnos. January 2007 a collapsed lung was found and IBC metastisized to lung was diagnosed. I started chemo the end of January and since May have also been having my lung drained every two weeks due to fluid build up. It su--s but I am alive. I am also on oxygen. My kids are all home from college for the summer which can be chaotic but I am glad they are home.
Hang in there and know you are not alone.

Bimmer · September 2007

It sucks each and every time!

How did you feel being told "again"

Comments

Categories