Topic: Young BC Survivors: Support questions

Nov 9, 2012 11:53 AM BilateralBeauties wrote:

1. How old were you when you were diagnosed?

I was 43, but started going to the Young Survivors support grou.

2. Do you/did you have children during diagnosis/treatment?

My son was 10, two 20 something step children. Hardest conversations were about the things he could see - hair loss, radiation burns, tears. The watch everything and say little. I tried to find one-on-one time to ask if he had questions. He often did, but unless invited wouldn't speak up.

3. What was most difficult for you physically during treatment?

Working full-time, breadwinner, caregiver and the family tired very quickly of seeing me sick. Hubby almost made up illness for himself to motivate me to do more through it all. It is tough on young families with demanding children, financial and other obligations.

I was also surprised at how physically debilitating radiation was. And between chemo and radiation I started having gallbladder attacks that it took 10 months to diagnose. Just had surgery this month. It's been 15 straight months of treatment, tests and wondering.

4. What was/is the hardest part mentally and emotionally for you?

Bilateral was/is scary. High Oncotype of 42. 10 months of puking after chemo where we looked for mets rather than a rotten gallbladder. Missing very little work through it all. It was very hard to see my son express concern and worry. He was much more in tune to my physical state than husband/older kids.

5. What do you wish was "out there" for young breast cancer patients/survivors? (i.e. what kind of support did you not get that you wish you could have had?)

It might be worth a two hour trip to a Young Survivors Group. I travel about 45 minutes for the one I go to. I felt more alive and understood there than anywhere else. Women were wrestling with many things. Many had been misdiagnosed or pushed aside as nothing when it turned out to be cancer. Some diagnosed during pregnancy and making decisions to stop Tami to try for more. Others giving up on children for best chance of survival. Work and husband/boyfriend topics. One woman's (age 27) her boyfriend found her tumor and told her to get it checked out. There is also a national conference for young survivors that some in my group had been to.

What else would I have liked - more support/knowledge on bilateral. I received great support to advocate for myself as well from this group.

Good luck

Nov 10, 2012 02:39 PM engk916 wrote:

i was diagnosed at age 38 two weeks ago with 3 IDCs in my right breast, and have 3 kids youngest aged 4.  i was told i need a MX because the tumors are too far apart for an LC.  after considering DIEP flap, i'm thinking i might forego any reconstruction so i can start my chemo and my life faster.  still grappling with the loss of my breast. it makes me sad but i don't like the continued fuss that reconstruction requires. 

i am getting a second opinion from a breast surgeon on tues and if she agrees with the MX i will go from there. 

this is a great thread, thanks for starting - i know what you mean by being the youngest person in the waiting room!

Nov 11, 2012 12:06 AM Pgjoh wrote:

Hi everyone
1. I was 34 years old when diagnosed
2. my daughter Ana was 15 months old
3. physically not having the energy, or ability to hold, cuddle, play with my daughter. chemo truly made me feel like on the doorstep to death.
4. Two experiences were especially difficult mentally/emotionally. During my first round of chemo I had a blood clot to the lung and almost died...just like that...that rocked me and I began to have panic attacks, inability sleeping afraid of dying in the night and anxiety reaching into the word, fears about family driving ect... The other emotional toll was that my young daughter wasn't aware of this, and my fear was I will live until she is old enough to know and experience my illness, if it recurrs around the time she is seven or eight, a horrible time for a young child to witness their mother dying, due to this feeling I went through a time where I thought it would be better to die now and save her the pain, that was a very hard time for me. I also found myself distancing for my husband and daughter, just in case.
5. I really wish I had some young bc sisters close, in person to share my feeling, laugh, cry and bond and become stronger with. It's lonely sometimes.

I am now done treatment and much of this is behind me for now, but things sneak up all the time, my new normal changes every day. I'm stronger and better for having this disease...AS LONG AS IT NEVER EVEr EVER COMES BACK!

Hugs to all of you

Nov 30, 2012 10:38 AM, edited Nov 30, 2012 10:39 AM by kmadigan

I was 33 when I was diagnosed (2 months ago) and just turned 34 last Sunday.  I have a 7-month-old daughter.

So far chemo has been the hardest part of my treatment.  I went through the double mastectomy without too much emotion - maybe that still needs to kick in.  My biggest fear then was that I wouldn't wake up from the surgery, so when I did, I guess I just felt grateful for that.  I am getting reconstruction and was never really thrilled with my little A cups, so in a weird way I'm looking forward to having the breasts I had always hoped for - although I'd give them up in a heartbeat i it meant I could trade in the cancer.

Chemo has definitely been the thoughest for me.  My SE include severe nausea that kicks in the same day I have treatment.  At first I was scared something was wrong with me, but then my oncologist said they tend to see stronger reactions in younger women - lucky us.  It has been very emotionally difficult to not be able to play with my daughter or work.  I've always been a doer - I was in the gym when I was 9 days overdue, so laying in bed fighting a stomach that won't settle for days just screws with my head.  But with that said - getting through chemo is absolutely possible and it feels like I'm one step closer when it is done!

The other part that has been hard has been the "outcome" predictors.  Everything is in 5 and 10 year increments which makes sense because many of the latest treatments weren't even in use 10 years ago, but it is still so scary.  I'd love to see a study that shows, "Women forty years +".  Afterall, we are in our 30's - don't we all plan to live at least that long?

When I do start to get overwhelmed I remind myself to slow down and think of just today.... and sometimes I slow down to just the next 10 minutes.  Whatever it takes to get through.  I've found that staying positive but letting those that love you see your fears too is essential.  We need to know we are not alone in our fears and our loved ones need the same thing.  I also plan on having an amazing blow out of a party when I finish my last Herceptin treatment!

So far, I haven't really joined a regular group, but I have been doing counseling with my husband hich has been great, and we have tried to take advantage of as many workshops/supports as possible that are offered through our treatment center.  Counseling together has been key - we already had a great realationship, but it gives us another stepping point to talk about our fears and different points of view on everything.  He is still very angry about my diagnosis and I'm a bit more at peace with the whole "God has a plan for me" idea. 

Not sure if any of this helps....  Def. not wanting to sound negative, but I want to be honest just the same.  Thanks!

Dec 3, 2012 09:31 AM, edited Dec 3, 2012 09:33 AM by KrisLiz

Hey Christina0001,

Thanks for your honest  and open answers... ugh cancer sucks. 

This treatment process is so difficult physically, but I'm having a harder time with the emotional part of it all now that I'm surgery and radiation. I'm with you on the kid aspect of all this. I was 32 when I was diagnosed, and my husband and I had tried for years prior to my BC dx to have kids, and now it's not looking like it'll never happen since I'll be on Tamoxifen for another 5 years. I'm trying to come to terms with not having kids... we'd kind of explored adoption about two years ago but decided that we weren't ready for that. 

I guess I just feel like BC has taken so much from me already, and I'm trying not to be angry that it's also taking away any chance at children. I like what you said about being a good aunt...it's one of my favorite things to be in this time of my life, so I'm going to focus more on that.

Thanks to all of you for your input! It's helped me to put things into perspective a bit more. kmadigan, I like what you said about slowing down and taking things in smaller time increments. Sometimes I can get myself on the verge of a panic attack when I think about recurrance and life years (hopefully) down the road. Taking life 10 minutes at a time is sometimes all I can handle. 

Jan 1, 2013 08:46 PM PinkSurvivor wrote:

1. How old were you when you were diagnosed?   I was 33

2. Do you/did you have children during diagnosis/treatment?  Yes, 2 daughters ages 6 and 8

3. What was most difficult for you physically during treatment? Extreme fatigue and feeling like I was dying, I couldn't get out of bed for a week after chemo, it was horrible. 

4. What was/is the hardest part mentally and emotionally for you? Mentally I always wondered if I was going to die and not be around to watch my children grow up, it was a constant thought in my mind.  I also wondered what effects it would have on my children in the long run, watching their mother go thru breast cancer, losing my hair, going thru all the surgeries.  I still have these fears, I wonder if I will get another cancer, I want to be around to see my children have children.  I still wonder "why me"

5. What do you wish was "out there" for young breast cancer patients/survivors? (i.e. what kind of support did you not get that you wish you could have had?)  I was very fortunate and had a ton of support.  I also met up with a bunch of young breast cancer survivors, 1 was from this board who lived about 10 minutes from me and we now try and meet up about once a month.  We have a group of about 8 of us now, it is so nice to be with other people who know exactly what each other has gone thru, even though I had a ton of support from family, friends and co workers, it wasn't the same, they could never really understand what I had gone thru, or the feelings I was having.  I am so thankful to have my little "breast friends" as we call ourselves.

Jan 7, 2013 10:24 AM Jennifer404 wrote:

Hi all...I hope I am not too old to be in this group...I know I am older but my marriage is newer and my kids are younger...so I find that I can relate to younger moms/wives problems more often than women my own age.
Dx: er+ 90% pr+ 90% her 2 +++
Age 39 June 2012
2.1 centimeter tumor
No lymph node involvement.
6 x tch , no rads, now doing herceptin
Bmx nov 2012 with immediate and perm implants
Two children...daughter 2 1/2
Son 10 months (at time of diagnosis)
Married for three years... Together for five.
Chemo was tough...but emotionally right now is the hardest for me. Just had a pet scan scare and it has rocked me to say the least.
My daughter has struggled with all the changes and has shown signs of stress. Currently looking to get her into play therapy.
I am sorry you are all here...but, if we all stand together on this, we will stand stronger:)
My wish is that there were supports groups for living a healthier life after cancer. Diet, meditation, excercise, so I am starting one here! I am also including play dates for bc moms with kids:)

Jan 8, 2013 10:56 PM Jennifer404 wrote:

Hi! Thank you for the warm welcome. I am doing well...just trying to get through this year of herceptin:)
Now if I could just get my hair to grow in faster.

Jan 10, 2013 02:00 AM Jennifer404 wrote:

Tatasister...sounds so cute! Lets see a picture!!!:)

Jan 11, 2013 11:00 PM Jennifer404 wrote:

Sooooo CUTE! You look so pretty...and I want to squeeze that baby:) lol

Jan 21, 2013 03:24 PM BilateralBeauties wrote:

jkeller - hugs to you. We hear you. One day at a time. It does get easier. Chemo was manageable for me. Radiation harder. Mental part is tough. It's been almost a year since treatment ended and just since Christmas, I feel like life is normalizing. Let the group know if you have specific questions.

Mar 7, 2013 04:53 PM Mumtobe wrote:

Hi ladies,

Any Triple Negative young survivors out there? Despite it being a disease that hits younger women more than older women, I always feel like the youngest out there....

Mar 18, 2013 07:17 PM Cassandreamy wrote:

1. I was 26 when I was diagnosed in November of 2012. 

2. I did not have any children at the time.

3. What has become most difficult for me is maintaining the physical intimacy between myself and my boyfriend. I'm on Zoladex to protect my ovaries which means I'm sort of menopausal state and have zero interest in sex. 

4. The hardest thing, mentally and emotionally, is worrying about other young women who could also face breast cancer. My best friend had one benign mass removed several years ago, and a second that she is 'too poor' to have biopsied. I don't want to fear her into doing something she doesn't feel is necessary but I find it hard to not worry about her constantly. 

5. What I hope there is enough of for young survivors is competent social workers in the oncology field. I have been very fortunate that the oncology department I go to has a fantastic social worker who is almost like a big sister to me! 

Mar 19, 2013 11:13 PM meni33 wrote:

Hello ladies

I am 34 years old and was diagnosed in Jan 2013. It was very scary and overwhelming. 2 weeks ago I had a lumpectomy and will be starting chemo soon.

I will be getting AC and Taxol and then radiation and tamoxifen. If any of you have had this treatment please let me know how it was? I'm very scared to go through it but I know it has to be done.

I have a 16 month old son who is very energetic but I am lucky to have my mom here to help me. Good luck to all of you on this journey.

Mar 25, 2013 05:08 PM Los1975angeles wrote:

Hello All!,
I just joined this site today and what a great thread i found! I was diagnosed at age 35 back in the fall of 2011. It felt like my world crumbled when I got the call. I have 3 kids (at the time they were 4, 6, and 15).
The most difficult part physically was the fatigue. My husband is a firefighter who works 48 hour shifts so I relied on my teenage daughter for help with the younger ones when my Mom wasn't able to help. For me radiation was worse than chemo, the fatigue was intense and a few times it felt as though I would simply collapse.
Mentally the worst part has been the loss of my breasts. I chose not to have reconstruction and it's very hard to look at myself daily. For me it's a constant reminder of the ordeal that I went through. Docs have told me I did the right thing by not having reconstruction right away because of the possible damage from radiation. But no matter what any doc says I still feel awful every time I see a woman on tv and her large breasts are hanging out of her shirt. I literally cringe.
Lately I have been considering reconstruction. But not sure what it involves. I had a very invasive mastectomy right down to my chestbone. I shudder to think what reconstruction might involve with so much tissue missing. Or even how many surgeries it would take to look the way I want. I wear prostethics.
The one thing I would love is to bond with other young survivors. The group here in town is chock full of women in their 50's and 60's. I feel sort of like an outsider being so young.