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Ladies in their 30s

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Comments

  • txmomof2
    txmomof2 Member Posts: 48
    edited October 2012

    Oh and MandalaB - that would be a great story to share on the thread Success Stories!! :)

  • Cottontail
    Cottontail Member Posts: 64
    edited February 2013

    Why would the ACS contact individual patients?



    I don't feel like I would fit in with any of the support groups. I'm 37, so I don't really relate well to people 50+, for example, and I have no kids, so I don't relate well with a lot of people in my own age group.



    Oh well.



  • txmomof2
    txmomof2 Member Posts: 48
    edited October 2012

    Well, the ACS contacts us regularly to donate money - I figured they could contact someone that was diagnosed with cancer. 

  • fujiimama
    fujiimama Member Posts: 236
    edited October 2012

    My ACS sent me a hand written letter telling me their locations. I've gotten to know several volunteers. Most are 10-20 years out. So yes you'd think the would have sent you something. I didn't join a support group. Their times are to hard with kids. So I joined other stuff and hang out here. I like reading the positive stuff and ignore bitter angry people. Rants are OK, but you know the ones that are always angry.

  • Cottontail
    Cottontail Member Posts: 64
    edited February 2013

    Did you, or your doctors contact the ACS for anything? People get diagnosed with cancer every day, probably by the hundreds. Idk how an organization would keep track of that?



    In fact, if I got any sort of notice from the ACS, it would be a blatant violation of confidentiality laws, as I didn't contact them or authorize my doctors to do so on my behalf. I would have reported every one of them (including the ACS) to the US Dept of Health and Human Services for HIPAA violations. Then I would have found a whole new team of doctors willing to follow federal rules.

  • markat
    markat Member Posts: 502
    edited October 2012

    I think I'm going to try the local group and see how I fit in. I know there's a group for younger women about 40 miles away, but I don't I need support that badly to drive the hour with traffic. I did fill out their volunteer form if any women in my community need help during tx.



    I never received anything from the ACS. I never contacted them for anything either. I didn't go to the Look Good or whatever it's called program.

  • fujiimama
    fujiimama Member Posts: 236
    edited October 2012

    Knowing me a gave them permission. But everything from then is such a fog, chemo brain is so fun. I thought it was sweet. They've been a great resource for wigs, hats, and other information.





  • Cottontail
    Cottontail Member Posts: 64
    edited February 2013

    My BS gave me a packet of info from the Young Survivor's Coalition. I thumbed through it briefly, it looked like it might have had some good resources. I tossed it in the recycling bin, though, I figure all the info is probably online if I want to look it up later.



    I didn't go to Look Good Feel Better, either. All of their times were during the day, and I've worked full-time through all of my treatments.



    I did think about going to a cancer-related nutrition class that meets at my local Whole Foods, but I doubt there is much they could tell me.

  • BoomersMom
    BoomersMom Member Posts: 28
    edited October 2012

    I haven't found local support groups to be very helpful.  I have been the youngest person by at least 10 to 15 years, and I just can't relate.

    I am seeing a therapist for the first time tomorrow evening.  I never saw a therapist before, and I think it's time for me to get my mind right.

  • babysammy
    babysammy Member Posts: 34
    edited October 2012

    I have been to my local support group.  There are a few younger women, but yes, many of them much older.  But they went through this when they were young and had young children.  So they can realte to my life,they remember what it was like.  And when they went through treatments it was a lot different, supposed to be better now.  There is one woman that has been a survivor for 50 years.  Now that lifts the spirits.  Plus they do loads of events to fundraise and help local women.  Something that I want to be part of. 

    Hopefully, if you decide to go its a good experience.  Or atleast not traumatic.

  • markat
    markat Member Posts: 502
    edited October 2012

    Thanks Babysammy. It takes a lot to traumatize me, so I should be fine. I'm not exactly sure where my emotions are right now. I blurted out to a woman who I hadn't seen in years, that I had breast cancer to explain my Don King-like hair. What a weird thing to say! She probably thought, what the heck!



  • borntosurvive
    borntosurvive Member Posts: 194
    edited October 2012

    I have been seeing the counselor at the cancer centre since mid treatment in February.  Wanting to take all my sleeping pills while bawling in the bathtub was kind of a red flag that I needed help.  So off I went to be put on an anti-depressant and to see the counselor.  I have kept up with seeing her every 2 weeks.  It really does help me to know that what I am feeling is normal as compared to others with breast cancer.  This whole "living life" part is hard for me as I am always waiting for that other shoe to drop.  I just went back to work last week (part time) and I can't believe how mentally drained I am.  My chemo brain is not allowing me to concentrate as well as I'd like and it takes me longer to get stuff done.  But it feels good to be back with my team. 

    It's hard to relate to younger people and there are no support groups in my area that are for younger women.  I always hear of more and more being diagnosed but nothing seems to pop up for us.  This website has helped me as well as the counseling.  I also have connected myself to some other young people just through people hearing of my diagnosis and connecting me with others they knew.  It's hard though and at times I still feel very alone.  

    I am glad we have each other xo

  • Tweetyb422
    Tweetyb422 Member Posts: 28
    edited October 2012

    I wonder if there are ant orgiaztions out there we could solicit to start under 40 support groups

  • markat
    markat Member Posts: 502
    edited October 2012

    Tweety, there is the Young Survival Coalition. The closest one to me is 2 hours away, so that's not happening. They might be able to point you in the right direction though.

  • Tweetyb422
    Tweetyb422 Member Posts: 28
    edited October 2012

    Same for me 2 hours away, just too far

  • babysammy
    babysammy Member Posts: 34
    edited October 2012

    Borntosurvive, glad you have found help.  I think when I finish with rads, I will see what support is offered that I can take advantage of.

  • Healing123
    Healing123 Member Posts: 6
    edited October 2012

    Hi Tweety,

    How are you doing? Are you in Rads now?

  • Tweetyb422
    Tweetyb422 Member Posts: 28
    edited October 2012

    Healing,



    Doing pretty good thanks. I go back to mo Monday then he will send me to start rads. Still got a spot not totally healed...otherwise doing good. Hope you are doing well :)

  • Healing123
    Healing123 Member Posts: 6
    edited October 2012

    I am doing fine, thanks. Just recovering from my last Taxol. I will have surgery in November. Trying to decide on uni or bilateral mx. How was the recovery for you?

  • jenjenl
    jenjenl Member Posts: 409
    edited November 2012

    Hi my name is Jen.  I was dx on 10/30/2012.  I am 33, married, mother of two - Mary age 5 and Andrew age 2. 

    I have 3 spots - lump 1 is 0.7 mm and lump 2 is 0.5 mm and then also a mammary lymph node (I think those are mostly small??).    I am ER + and PR -, I am not triple negative.  HER2/neu results will be back next week. I would be stage 1 if it weren't for that stupid node.

    Based on the information we have today the following is the plan:

     

    Start chemo for 4 months and run additional tests to check spread and a genetics test.  I PRAY it has not spread, I am literally terrified.  They did think by the US that the axillary nodes have not been impacted but that's just their "gut feeling. 

     

    Double mastectomy - i am going for the double bc of my age and probability of it coming back. I will have to have an expander inserted vs taking skin from the back and tummy bc I don't have much.

     

    Then radiation.

     

    So that's my story and plan. I just pray the scans show no spread and no lymph nodes.  I also was unsure of the chemo before the surgery (kinda just wanted it OUT) but based on his explanation I agreed at that time but said I reserve the right the change.

    I am scared out of my mind, practically paralyzed with fear.  When I look at my kids I almost lose it.

  • moe0279
    moe0279 Member Posts: 100
    edited November 2012

    Jen, it seem that you and I have a lot in common..when diagnosed my boys were 6 and 4 and I was 31 yrs. old. I'm triple negative, so they strongly encouraged me to have neoadjavant chemo, surgery, then rads.  From all that I was told doing it in this order will give you and the dr.s to see how you react to the chemo and then there is room to change if needed.  I believe that I was very fortunate in completing it this way because had i had surgery i would have not known that I had a complete response to the chemo. I was able to have a lumpectomy because of the response that I had... Although the choice is your and only yours to make.  I knew I did not like my first  dr.'s immediate treatment plan, so i got a second opinion. It was a gut feeling for me and I knew that I was not comfortable with what I heard in the beginning.  The first plan was immediate mx, chemo then rads (maybe)...

    I believe it is a personal choice...many, including myself want it out as fast as possible!  I completely understand that feeling...

    have you had the genetic testing?  

    I will be praying that you have peace and hold those babes tight, my boys made me feel the best!  Let me know if you need anything!!

    Melissa

  • jenjenl
    jenjenl Member Posts: 409
    edited November 2012

    moe0279 - I had the genetic test done on Friday.  I am actually headed out the door in 10 minutes for the MRI.  Meet the chemo guy on Tuesday and then the additional scans on Thursday.  I am so scared that it has spread...every ache and pain sets me into over drive.   Much love. 

  • moe0279
    moe0279 Member Posts: 100
    edited November 2012

    I remember those feelings and Im so sorry your going thru this...I was so angry one minute and the next i was trying to figure out if i was dreaming.   If you are unsure or have questions, a second opinion helped me...You have time to get those...I wish i could be there for you, I will be thinking of you on these days and foward...Please let me know if you just want to vent...I completely understand..I still have my days that I need to vent and ask questions...Praying hard that all is well!!! :) 

  • CJRT
    CJRT Member Posts: 221
    edited November 2012

    jen- i was diagnosed at 33 when my kids were 3 and 7 weeks. i also had neoadj. chemo, which was not what i anticipated. however, they seem to like to do chemo first in younger women, like us. i also opted for a BMX because i wanted to feel that i was being as aggressive as possible. for me, it was extremely difficult waiting to start treatment, and things got better psychologically once i felt like i was moving forward. i am sure we can all relate to the fear. it does get easier. i found the discussion boards to be extremely helpful for me to get practical advice and support from incredible women who truly "get it." best of luck.

  • borntosurvive
    borntosurvive Member Posts: 194
    edited November 2012

    Jen:  I was diagnosed at 33 and my kids were 1.5 and 3 years at the time.  I had my BMX first and dose dense ACT chemo after that.  Everything moved really fast for me and from diagnosis to the end of chemo was 5 months with my surgery in there too.  It was such a challenge for me to get through chemo but I would sit and look at pictures of my kids and journal to help stay grounded.  I kept telling myself that I could do anything for 5 months.  The waiting is the hardest and once I was into treatment I felt like I had a plan and was moving forward.  I am struggling now emotionally to try and just carry on.  Every day is a bit easier and I have learned so much about myself.  We're all here for you, lean on us whenever you need to Hun xo

  • jenjenl
    jenjenl Member Posts: 409
    edited November 2012

    Scans came back clean, has not spread to liver, lungs or bones.  Obviously, still have to check those nodes but a small victory.  Also, results came in HER2 -.

    Today is the 1st day I actually feel hopeful. 

  • Healing123
    Healing123 Member Posts: 6
    edited November 2012

    Good to hear the news Jen. So happy for you. I, too, have young child, 6 yr old girl. She is the world to me. Keep fighting. Praying for all mothers affected by bc.

  • borntosurvive
    borntosurvive Member Posts: 194
    edited November 2012

    Jen:  Happy to hear your scans are clear.  HURRAY!!!!  I was 33 when I was diagnosed and my boys were 1.5 and 3 years......it's hard but you will and can get through this.  Hang in there and if you ever want to PM me, I am here xo

  • jenjenl
    jenjenl Member Posts: 409
    edited November 2012

    The plan has been finalized.  On Monday I will be having the right breast removed and necessary nodes - have to have lymph nodes removed bc of the mammary node (no TE).  I will then start chemo for 4-5 months, rads I think he said 6-8 weeks.  Then about 4 months later remove the left breast and do reconstruction.  As long as that plan get's both breasts remove and cancer gone I am GOOD with it.

    His thought is let's just get the cancer (critical path) taken care of and worry about reconstruction later.  I, to a certain degree, am rolling with the professionals.   I also thinking this will help with healing and can still snuggle on the left with the kiddos.

    I just see everyone getting TE and immediate recon and it makes me feel like I am doing something wrong.  Thoughts??

  • Tweetyb422
    Tweetyb422 Member Posts: 28
    edited November 2012

    Jen,



    I had chemo then surgery and more chemo, I had umx with no reconstruction. After I finish rads I plan on having reconstruction and the other side removed. I was told if doing rads, best to wait on reconstruction 6 months post rads. I plan on DIEP when the time comes. Just completed first week of rads, so I have a ways to go :)

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