Newly diagnosed and scared...

josiemac · May 2005

I am new to the chat room and really scared right now. I was diagnosed with invasive ductal cancer with 12 of 15 lymph nodes positive. Also estrogen and progesterone negative. I will start my chemo protocol next week with Adriamycin/cytoxas. Anybody have advice, experiences or prayers for this 40 year old mother of 2 (7 and 10 yrs old).

Blessings to you all

Josie

wimpy · May 2005

Hi Josiemac

I'm so sorry that this has happened to you and your children. I am momentarily a bit speechless because I remember how overwhelming it can be in the beginning. All I can really tell you is that it looks at its worst when you first begin treatment.

Treatment is not fun, but it likely won't be as bad as you are imagining it could be right now. Just remember that there will be a few shocks along the way. I, for example, became upset that I would never be able to give blood again and that the cancer institute staff put two permanent tattoos on my chest without telling me in advance so they could easily orient the machinery for radiation treatment.

I would suggest that you should take a friend with you when you go for treatment or when you are seeing the oncologist. The friend will remember what the doctor has said and will be able to "defend" your interests during a time when you will be suffering from shock and not capable of comprehending treatment implications as well as you will in a few weeks after you have gotten over the initial shock. Accept help from people and don't get overtired. Use your energy to get well, and as much as it sounds just ludicrous to you at the moment try to relax and rest and direct all your energy to healing. Remember that treatments have improved drastically in the last few years and the doctors diagnosis is not an automatic death sentence. Lots of us are trucking along twenty to twenty-five years after treatment with no re-occurence.

I send you peace and love and it goes without saying that I will pray for you and your family.

P.S. do the stretching exercises for the treatment arm faithfully as you heal from the operation. It is easy to forget to do them but I found that to avoid "cording" and increase the overall mobility of the arm it really helps.

Lot of love, Wimpy

Ellison · May 2005

Hi Josie,

Yes, I know the feeling. I was first diagnosed in 2003. You have no idea what to expect. I read a a few books and went to a womans support group for breast cancer. It was a help to me to have someone that walked before me give me some idea what the IV treatment was going to be like. I had the lump removed and after Irecovered from that I started the treatment. I also had 33 radiation treatments. I was more scared of that than the IV.. Actually the radiation treatments was easy in comparison. It is a process or at least for me it was. You do it one day at a time. You can do it. I had the same chemo drugs as you and one more. I would go every three weeks and have the IV. I stayed home form work the first week and worked the second and third week. Not everyone is the same about how they feel. I was tired the first three days and then I would feel better.
I had a lot of support form family, friends,and co-workers. My faith also pulled me thru. God and I had a lot of conversations. I really felt I was carried thru the whold thing.

My prayers and thought will be with you and your family. You can do this I promise.....

josiemac · May 2005

Ellison said:
Hi Josie,

Yes, I know the feeling. I was first diagnosed in 2003. You have no idea what to expect. I read a a few books and went to a womans support group for breast cancer. It was a help to me to have someone that walked before me give me some idea what the IV treatment was going to be like. I had the lump removed and after Irecovered from that I started the treatment. I also had 33 radiation treatments. I was more scared of that than the IV.. Actually the radiation treatments was easy in comparison. It is a process or at least for me it was. You do it one day at a time. You can do it. I had the same chemo drugs as you and one more. I would go every three weeks and have the IV. I stayed home form work the first week and worked the second and third week. Not everyone is the same about how they feel. I was tired the first three days and then I would feel better.
I had a lot of support form family, friends,and co-workers. My faith also pulled me thru. God and I had a lot of conversations. I really felt I was carried thru the whold thing.

My prayers and thought will be with you and your family. You can do this I promise.....

Thanks Ellison,

I had my first visit with my onc today and it was a good visit. I'm feeling a liitle more at ease since my appt. I have decided to cut my hair before chemo so the change doesn't scare my children. Its almost summer here in NY and they are with me everyday when school's out. How will I find the strength to entertain them over the next 3 months? How will they understand what's happening to mommy? Why can't mommy take us swimming...the park....biking...??? Anyone have advice on Cancer reading material for children?

CindyPR · May 2005

Josie,
Wow, what a experience, am here for you. Have gone through two lumps. with breast cancer in both breasts, but not as bad as you. Chemo? how long. As being diagnosed, is the worst. The lymph nodes, the chemo should take care of it. What stage? Don't be scared as had to take care of mine in Puerto Rico, hubby in military, but did it. Be strong for your boys, they need you. My Prayers and thoughts are with you. We are here for you.
Cindy PR

mssue · May 2005

Hi Josiemac,
I'm Sue,like everyone else here it's a scary time. My heart go out to You. I was thinking of Your children, my daughter was 12 yrs old even though she was here and very helpful during and after the treatments,I really thought she understood from our conversations what was really going on. She did to some extent. I don't think it really hit her though until it was all over at the Relay for Life Event , during the survivor lap. They had a speech as all of the survivors were walking letting everyone know that these people deserve respect because of all they had been through they were TRUE SURVIVORS. My heart sunk when the lady sitting with my daughter told me that my daughter started crying and told her that that was what her Mom was a survivor. I think until that point even after all of our talks she didn't get it until that very moment.It still brings a tear to my eyes just remembering it.
Your children will probably enjoy the fact of being part of the solution in your family,helping and knowing that they've done something good.It actually helps boost their self confidence. It's okay that they learn that there are times of weakness in everyone, and what could be more Loving than them help take care of their Mother,even at their young age.

There are some websites out there for children whose parents are going through cancer,I found them before I just can't remember where I found them,but they are out there.
There will be times when You aren't able to entertain and go out but there will be times you can. This may be a blessing in disguise,allowing You the opportunity to grow closer with your children , spending quality time with them and making it work for all of you,rather than trying to entertaining them.
You must take special care of Yourself during this time also,children also follow our example.As You are going through the motions and learning if they can be involved some how when everything gets better they can take pride in the fact that they helped.
You are all in my Prayers-Keep us posted we are here when You need us.
God Bless You and Your Family
Sue

sassysally · May 2005

josiemac, you can still do all of the things with your children that you had planned to for the summer. Swim, go to the park, go for a walk, bike ride... all of it. I am a three time bc survivor. I had bc at 28, 36, then 40. My son was born in the middle of it all at 33. Take it one step at a time. With the adrimycin and cytoxan drink water before during and after. It will help it flush through your system. Also chew on 3-4 vitamin E capsules a day. ( Spit out the casings) this will coat your mouth and keep you from getting mouth sores. Be honest with your kids. IF they ask questions, answer them honestly. My son was 2 1/2 the second go round and we shaved our heads together. He thought that was sooooo cool. He was 7 the third time. He will now be 11. Take a deep breath. Attitude is 98 percent of the deal. If I can help you, let me know. I am here for all and anyone who wants to talk, have a shoulder to cry on or just laugh. Yes we do laugh here. Laughter is truly the best medicine. The word Cancer strikes fear in the heart. This journey can be finished. Take it one day, one step, one minute at a time. It will be ok... I promise.

Sassy Sally

gerddy · May 2005

what do you think heser/ovaries out
Hello,
I just finished chemo and start radiation on the 20th. After 6 weeks I'm planning on having a complete historectomy with the ovaries out to reduce chances of reoccurance. My family has a strong history of b/c. I'm only 41 and Tomafin is only good for 5 years. Menapause doesn't hit in our family until late 50's. My doctors don't have a problem with this idea, some our encouraging it. What do you think?
Gerddy

hummingbyrd · May 2005

Finally! I wrote this like 2 days ago, but couldn't post. So now, OK Josie....

How well I remember the feelings. I was diagnosed at age 38 with 13 out of 27 + lymph nodes. My main concern was my children, boys age 8 and 11. Everyone in our family they knew that had the big C died, it was sooo scarey for them. I was just up front and honest with them and told them everything that was going to happen before it did. They took it well. Kids are resilient and then too it depends on your outlook. They feed off of our emotions. Mom may look bad...BUT...if she says everything is going to be OK it's going to be OK!
A year after diagnosis my cancer went to my bone. I told my boys, preparing them for the worst, "If and when I die, don't be angry at God." My then 12 year old said, "Mom, it's not if it's when because we are all going to die." I laughed and said, "OK, if I go before you, try not to miss me too much." That's how much their faith had grown in one year. I was diagnosed June of 2000. This June will be 5 years! This diagnosis at first seemed such a tragedy, but it has been a blessing.
I am a Stakeholder for the ACS Peer Review Board which means for the next 2 years, Lord willing, I get to vote on how the ACS spends their 100 million dollar a year grant research money! Now for me that is an incredible honor!
AND....
I just had a book published
Cancer And Beyond
The Things You Want To Know About Cancer...But Nobody Will Tell You

Well, trust me, I tell all I know to tell to help someone survive. Anyone interested in ordering it go to my website www.thebibleblog.net and go to the catalogue page.

Don't worry Josie, this stuff is beatable and treatable. It' natural to be afraid, but you gotta get past that 'cause this stuff will drive you nuts if you let it. I took all the conventional treatments and looked into alternative treatments, but I have to confess, and do so readily, it's my faith in God that has kept me here!
God bless and good health.
Hummingbyrd

krisrey · May 2005

Hi Josie,
I was the same age as you (41) when I was dx just two years ago. One of my main concerns like you were (are) my children. My girls were 7 (twins) when I was dx. I was going through my chemo treatment from the end of May until the end of September, then rads until dec 03. I understand your concern about playing with the kids. Some days it was just not possible but luckily I have a pool and was able to let them swim while I watched.
I have a wonderful friend that has four kids of her own but always took my kids to do things. I felt horrible about not being able to do some stuff, and had a very hard time taking the generous offer of help.
I also think the best thing you can do is be totally up front with your kids on what is going on. Preparing them in advance is a big must and not trying to hide anything. I found that if I tried to hide stuff then they became more anxious because they could tell.
My advise is to take any help that is offered and know that it is only temporary. The treatment stinks but it is doable.
Its been two years and my girls are wonderful and made it through OK.
Do you have any friends that would be willing to take the kids on those days that you are not feeling well?
If you any questions, or would like to talk please feel free to email me.
Good luck and let us know how you are making out.
Kristen

martyzl · May 2005

EBledsoe- can cancer hurt?
Hello! I tried to reply but the site is being screwy...

Well, yes, cancer can hurt... it doesn't always but there are those of us who have experienced pain due to their cancers.

As Linda said, please, please get thee to the doctor quickly. What you are writing is FAR too familiar to me... I waited for years, at least 6, before I finally had my breast checked out. IF I had done something earlier, perhaps it would have caught things a bit earlier.
Please note that cancer doesn't always show up on a mammogram either. Mine only showed up with ultrasound and there were 2 tumours in the breast with vascular invasion (blood vessels supplying them). You might want to keep an eye on your liver due to your described pain in your shoulder blade region. I have been having this and have had testing which didn't show any metastases but I am still keeping an eye on it.

If you aren't taken seriously by your doc, find another right away. Follow your gut/instinct.
This is your party/body/life!!!

May this be just a small bump in your road!
Please keep in touch!
Marty (zenhound@cac.net)

martyzl · May 2005

Hello Josie! Sorry about the above post, the site is really being odd! Having to cut and paste all over.

This is for you! *smiles*

Wish I could calm your fears and I am so glad that you are feeling better after your first onc. appt!

I was 37 at dx, with two daughters, then 6 & 9yrs old. I will be 3yrs out of dx, still "clear" *knocking on anything remotely wooden* for my upcoming 3yr anniversary on Memorial weekend.
I was Her2Neu positive, 3 of 23 (? was it 23? You see, it softens and fades over time!!) positive nodes, one of which was a 1cm tumour.
Epirubicin, Cytoxan & 5FU (Epi is a newer Adriamycin)... chose not to radiate...
I talked at length with the kids after I had researched all I could. They knew I would lose my hair, possibly turn yellow-ish, slow down, need help and not be terribly much fun for a while.
When I cut my hair very short just before my chemo, the girls cut theirs short as well and when my hair fell out, my husband shaved his head.
We used coloured eyeliners to draw on my head, we took silly pictures, we talked, they learned to do a bit more around the house and to lower their expectations of me for a while. I still walked them to school every day until the last treatment. We played more board games. We read "Becky's Worry Cup" and talked about cancer, their fears, my fears (modified to age), etc.

This will be a learning and growing experience for all of you.

Josie, I was knocked on my bum more than halfway through the chemo. I was fine in the beginning, just increasingly tired. It's very do-able and you will be wonderful!
Do look up my website in here under martyzl and feel free to contact me at zenhound@cac.net any time.
Yes, it can be very scary at times but you can get a "handle" on it as well. In this time, you will find a wellspring of strength that you never suspected you had!

Be well Josie, stay in touch!
~marty

sevey · May 2005

Josie,
I am a breast cancer survivor going on 8 yrs. I was afraid at first but after I had a double masc. after my last round of chemo. By saying my last round of chemo I mean my body can no tolerate conventional meds which is chemo & radiation. Anyway I have been through a lot of different cancers starting in the 80s. I am still here & at your age you have a edge because you are young. I am 47 yrrs old & still dealing with it. Still channel your fear to fight this with the Grace of God. He will not let you down. He is always there for you & as long as you believe & sticking around for support because there are many here who feel the same way. WELCOME & MY PRAYERS ARE WITH YOU.
God Bless You
With Healing
Love Cathy
P.S. You can always email me on the csn secure line or the ACSCSN mailbox we all have.........

DLC1234 · May 2005

josiemac, I know how scared you are. I was diagnosed in Dec. 2003. My tumor was so large, it grew quickly in my breast, they did chemo first then surgery. I remember when the ultra sound tech said this doesn't look good, and left the room. I prayed to the Good Lord right there and put myself in his hands. He walked with me all the way, and still does everyday. My faith, good doctors, treatments and dear family and friends got me cancer free a year later. Take each step as your ono starts your teatments. I took a small spiral notebook with questions between visits so I wouldn't forget to ask her. My mother also went to all my treatments and appointments even though I am 56 and she is 77. I had the support of a very dear male friend, that I don't know what I would have done without. Let your friends and family help. Don't allow negative people into you life, you don't need that now. You will find that you will be able to still find time with your children, you may have to do things differently than before, like reading to them,or them to you, playing cards or computer games while you rest. Be honest with them, I am sure someone knows if their is a book or has suggestions to help you tell them. Cutting your hair will really help you through that part. Don't be surprised if the kids want to join in, they are tougher than we give them credit for. If it is ok I will add you and all of our sisters and brothers with cancer to my prayer chain.

KHarrison · May 2005

Hi Josie,

I was diagnosed in December of 2002, large tumor, 5/17 nodes positive. Convinced I had months to live, I laid in bed at night imagining what songs would be played at my lovely, sad funeral. Everyone would be sobbing softly and remembering what a great woman I was.

Well, here it is 2.5 years later and girlfriend, I am not dead! Maya Angelou says "Surviving is important. Thriving is elegant!" I do not know what my future holds (nor does anyone) but I do know that I chose to live an elegant life where cancer does not control me or my emotions or the emotions of my family.

My children were 5 and 8 when I was diagnosed. My son took the whole think in stride but my daughter was very upset the evening we decided to shave my head. My chemo had been about 2 weeks previous and was falling out by the handfuls. We asked them if they wanted to watch my husband shave my head. My son said "Of course!". My daughter began to cry and said no. I took her upstairs to take a shower and she began to cry in earnest. She said "Mom, this hurts my heart so much." So we cried together and I told her that my hair falling out meant that the drugs were going all throughout my body, getting every bad cell. She told me that she didn't ever want to see me bald so I promised her I would always wear my scarf or wig when she was around. One day when I was sitting watching TV, she walked in and said "Mom is your head hot under that scarf?" I said yes and she said "Can I rub your head?" The feeling of her cool, little hands massaging my head was like an annointing straight from God. It makes me cry to think of it now.

You know your children and how much information they can absorb. We never lied to our kids or anything like that but we also respected their age and level of maturity.

As far as entertaining them this summer, you will take each day as it comes. On the days you feel good, and there will be those days, you can do something with them even if its sitting in a nice, cool movie theater! I would take my kids to the park where they could run like the wind while I sat in the shade and read and rested. I would say there were probably about 3 0r 4 days every 3 weeks where I was pretty useless as a mom. On those days, I depended upon my friends, my husband and my mother to take over.

Chemo today is not what it was even 2 years ago when I had it. The anti-nausea drugs are exceptional and I made it through 8 treatments without ever throwing up (which isn't to say I didn't feel like throwing up). Right now you are probably thinking of every Lifetime movie you ever saw where the patient puked their guts out all the while keeping upbeat as well as their face fully rouged and mascara-ed! I know for some people, it is still like that but that, I believe, is the exception.

Josie, now is the time to not only to survive but to THRIVE! Keep coming back here for advice and info because the women here are better than any MD or drug!

Blessings to you and your family,
Karen

josiemac · May 2005

sassysally said:
josiemac, you can still do all of the things with your children that you had planned to for the summer. Swim, go to the park, go for a walk, bike ride... all of it. I am a three time bc survivor. I had bc at 28, 36, then 40. My son was born in the middle of it all at 33. Take it one step at a time. With the adrimycin and cytoxan drink water before during and after. It will help it flush through your system. Also chew on 3-4 vitamin E capsules a day. ( Spit out the casings) this will coat your mouth and keep you from getting mouth sores. Be honest with your kids. IF they ask questions, answer them honestly. My son was 2 1/2 the second go round and we shaved our heads together. He thought that was sooooo cool. He was 7 the third time. He will now be 11. Take a deep breath. Attitude is 98 percent of the deal. If I can help you, let me know. I am here for all and anyone who wants to talk, have a shoulder to cry on or just laugh. Yes we do laugh here. Laughter is truly the best medicine. The word Cancer strikes fear in the heart. This journey can be finished. Take it one day, one step, one minute at a time. It will be ok... I promise.

Sassy Sally

Thank you...thank you everyone who answered my call. I still have bad days but they are greatly outweighed by the good ones. Every day is brighter and clearer. I laugh alot more than cry these days. Whoever said diagnosis was the worst part of it was right on point. I will start my treatment right after Memorial day and will stay focused on recovery. Nowadays, crying is not a option only hope and happiness for this cancer chic!!! Thanks and blessings to you all.

rosie56 · July 2005

My prayers are with you. I also have just been diagosed with exacty what you have. I will be going for more testing next week to see if it has spread. We need to think positive even though it is very difficult. I had a bilaterl masectomy even though the cancer was only in my left breast. I have been told by many it was a good decision. I will keep you poster and in my prayers and you do the same if you hear anything. God Bless and be strong.

Newly diagnosed and scared...

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