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Topic: Breast cancer and parenting special needs children

Forum: Family and Family Planning Matters —

A comforting place to discuss planning a family, fertility concerns, parenting children, or relationship issues with partners, siblings, or parents following a diagnosis.

Posted on: Apr 5, 2017 12:20PM

Scottiemom11 wrote:

I would love to see an active thread for those who are parenting or even grandparenting special needs children -of any age- while dealing with breast cancer diagnosis, surgery, treatments and after.

To start off, I am the mother of two special needs children, both of whom are on the autism spectrum and ADHD. When I was diagnosed, the oldest was 18 and the youngest was 12. My youngest also has had multiple serious health issues since birth, including surgeries, asthma and food allergies.

Since my diagnosis, I have had three surgeries while working full time and have had difficulty keeping up with my children's needs. I am blessed with a wonderful husband, but it's still hard. No family close by.

I now need to refigure how I can balance my recovery and treatment with my children's needs.

Scottie

Diagnosed at age 48. Oncotype DX 11. BRCA Neg. Additional Therapy: Lupron & Gabapentin 2/5/15. . .Truncal Lymphedema 9/2/16. . .Capsular Contracture 2/10/17. . .Writer, photographer, mother of two autistic children. Vegetarian and Gluten-Free Dx 10/10/2014, ILC, Right, <1cm, Grade 2, ER+/PR+, HER2- (FISH) Surgery 12/2/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 12/3/2014, ILC, Right, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Dx 12/3/2014, LCIS, Both breasts, 0/4 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 12/30/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 7/26/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 3/19/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Apr 14, 2017 09:18PM SSBNewbie wrote:

I have a 15 year old son with Autism. He has been much more flexible with changes to his daily routine due to my appointments and surgery than I anticipated, but we are still a long way from the end of the treatment

ILC Stage IIA on the right, IDC Stage IA on the left. BMX on 3/30/17.
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Apr 15, 2017 10:36AM Scottiemom11 wrote:

Hi SSBNewbie. . .Hugs and prayers for your journey. Like you my now 15yo ds has been more flexible this time around. For my first surgery, ds was 12 and stayed at home with 18 yo dd while I was in hospital. He was not happy about us not being there and he called the hospital the night of my surgery and asked Dh to come home.

Having special needs children is never easy. That is also a journey.

Scottie

Diagnosed at age 48. Oncotype DX 11. BRCA Neg. Additional Therapy: Lupron & Gabapentin 2/5/15. . .Truncal Lymphedema 9/2/16. . .Capsular Contracture 2/10/17. . .Writer, photographer, mother of two autistic children. Vegetarian and Gluten-Free Dx 10/10/2014, ILC, Right, <1cm, Grade 2, ER+/PR+, HER2- (FISH) Surgery 12/2/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 12/3/2014, ILC, Right, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Dx 12/3/2014, LCIS, Both breasts, 0/4 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 12/30/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 7/26/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 3/19/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Apr 15, 2017 02:00PM mustlovepoodles wrote:

No, it is not easy to raise a child with special needs. My hat is off to everyone of you who are not only dealing with cancer, but also taking care of your children. I have a son severe cognitive impairment and he's autistic. Thankfully he is old enough to live in a group home now, where he gets excellent care. I never thought I would have to do that but it has actually led to better quality of life for all of us. Instead of being his constant caregivers my husband and I are now just his loving parents. I don't know how we would have dealt with this if we had been charged with the constant care during my breast cancer experience. It was all I could do to even take care of myself and my husband is fully disabled.

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/20/2015 Lumpectomy Surgery 9/3/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/4/2016 Prophylactic mastectomy: Left, Right Surgery 10/19/2016 Hormonal Therapy Femara (letrozole) Surgery
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Apr 15, 2017 03:24PM Scottiemom11 wrote:

mustlovepoodles. . .hello and thank you for sharing. You have had some very difficult decisions but you are right about quality of life.

I am currently looking to downsize my career again -I did so for 10 years after ds was born because of his health issues, then I ramped it back up for the last five years. Now I need to take a step back again. That means less money but better life quality for all of us.

Scottie

Diagnosed at age 48. Oncotype DX 11. BRCA Neg. Additional Therapy: Lupron & Gabapentin 2/5/15. . .Truncal Lymphedema 9/2/16. . .Capsular Contracture 2/10/17. . .Writer, photographer, mother of two autistic children. Vegetarian and Gluten-Free Dx 10/10/2014, ILC, Right, <1cm, Grade 2, ER+/PR+, HER2- (FISH) Surgery 12/2/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 12/3/2014, ILC, Right, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Dx 12/3/2014, LCIS, Both breasts, 0/4 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 12/30/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 7/26/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 3/19/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 17, 2017 04:37PM Trvler wrote:

Gosh, that's hard. I have an ADHD kid and right when she started her first year in middle school, I had major surgery out of state. And all my expectations for how hard middle school would be with her have come true. I guess you just have to be easy on yourself and let some stuff go.

Allison Dx 1/16/2015, ILC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- Dx 2/26/2015, ILC, Left, 4cm, Stage IIIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- Chemotherapy 3/24/2015 AC + T (Taxol) Surgery 9/1/2015 Mastectomy; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Radiation Therapy 10/15/2015 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/1/2016
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Nov 17, 2017 05:07PM mustlovepoodles wrote:

Trvler, I think you're right. Life is hard when you have a child or children who have special needs. Breast cancer only complicates everything.  Deciding to let go of the small stuff is a big step in taking care of our mental and physical health.  We have had a lot of upheaval this year, with my health, my husband's cancer, and my mother's illness and death.  DH & I came to the decision to seriously downsize so that I could retire (I'm 61.) It's sooner than we anticipated and we have to watch our budget, but it's working and I'm so much happier.  If things don't go the way they should, we can always change our plans.

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/20/2015 Lumpectomy Surgery 9/3/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/4/2016 Prophylactic mastectomy: Left, Right Surgery 10/19/2016 Hormonal Therapy Femara (letrozole) Surgery
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Nov 17, 2017 05:23PM ElaineTherese wrote:

Trvler,

Yes, middle school is tough for our special needs kids! (Actually, I think puberty and middle school are tough for all kids.) I have 15 year old twins with autism, and puberty corresponded with the deterioration of the oldest's mental health. He became depressed, anxious, and aggressive. Thankfully, after having tried 10+ different medications, he is on mood stabilizers and is much calmer.

mustlovepoodles,

I've been researching group homes for my sons as they also have intellectual disabilities and will never be able to live independently. I just got the application forms for one so they can go on the waiting list at that facility. They are incredibly long and detailed! I think I'll have to wait until Winter Break to fill them out. Alas, I'm "only" 50. It will be awhile before I retire!

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
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Dec 25, 2017 10:31AM Scottiemom11 wrote:

Tryler, Must Love Poodles & Elaine,

Glad to see some posts here. I hope more join in. I know there must be many women on these boards who are dealing with BC and have SN kids. I haven't checked the boards since early Nov. because I've been working too much and photographing a number of events including our local 2-day BC walk. Photography is my passion but not my "day job". Elaine, I'm so glad to hear that you found the right meds for your son. We've been through that too many times with both Dd and ds. Must Love, I did "downsize." Still work too many hours but I can take time off when needed. Less money around here but stress is down somewhat. Still working on the right balance.

Scottie

Diagnosed at age 48. Oncotype DX 11. BRCA Neg. Additional Therapy: Lupron & Gabapentin 2/5/15. . .Truncal Lymphedema 9/2/16. . .Capsular Contracture 2/10/17. . .Writer, photographer, mother of two autistic children. Vegetarian and Gluten-Free Dx 10/10/2014, ILC, Right, <1cm, Grade 2, ER+/PR+, HER2- (FISH) Surgery 12/2/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 12/3/2014, ILC, Right, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Dx 12/3/2014, LCIS, Both breasts, 0/4 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 12/30/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 7/26/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 3/19/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jan 6, 2018 01:49PM MeganPomputius wrote:

Hello!
My name is Megan Pomputius and I am a teacher and author living in Pennsylvania. After being diagnosed with ovarian cancer when my daughter was 2 years old, she had many questions that I couldn't find the right answers. It motivated me to write a children's book to help other moms going through this diagnosis. It is a hardback book that demonstrates a mother and daughter relationship before, during, and after a diagnosis. I hope that it can provide an incredible resource for families going through this situation in your lives. I believe it will provide a great communication for you and your children.

The book is Still My Mommy, By Megan Pomputius and can be purchased at Mascot Books - Thank you!!

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Jan 6, 2018 02:16PM Shellsatthebeach wrote:

What a beautiful book Megan!

Dx 3/2017, IDC, Left, 3cm, Stage IIIB, Grade 2, ER+, HER2- Surgery 8/28/2017 Lymph node removal; Mastectomy: Left Dx 9/15/2017, DCIS/IDC, Left, Stage IIIB, Grade 3, 6/10 nodes, ER+/PR+, HER2+ Targeted Therapy 9/24/2017 Herceptin (trastuzumab) Radiation Therapy 10/17/2017 Breast, Lymph nodes, Chest wall Targeted Therapy Perjeta (pertuzumab) Chemotherapy AC + T (Taxotere)
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Jan 7, 2018 01:19PM Scottiemom11 wrote:

Megan, that is awesome. I have two children's books that I wrote while going learning to be a special needs parent. You are absolutely right. It is difficult to discuss cancer with a child. We went through that too.

Thanks for sharing,

Scottie

Diagnosed at age 48. Oncotype DX 11. BRCA Neg. Additional Therapy: Lupron & Gabapentin 2/5/15. . .Truncal Lymphedema 9/2/16. . .Capsular Contracture 2/10/17. . .Writer, photographer, mother of two autistic children. Vegetarian and Gluten-Free Dx 10/10/2014, ILC, Right, <1cm, Grade 2, ER+/PR+, HER2- (FISH) Surgery 12/2/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 12/3/2014, ILC, Right, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Dx 12/3/2014, LCIS, Both breasts, 0/4 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 12/30/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 7/26/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 3/19/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant

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