My mom has TN IBC... so scared.

starhs3

I'm 25 years old and my mom was diagnosed with TN IBC in July 2011. She was given a/c chemo followed by taxol and completed chemo on Nov 4. She had double mastectomy on Dec 2 and we just received the results from the lymph node biopsy. They found cancer in 14/17 nodes. I'm so scared. She's only 54 and my best friend. She also has MS and the treatments are making it really hard for her to walk. She hasn't lost any weight but has frequent panic attacks and some neuropathy and leg pain at night. She's scheduled for radiation followed by more chemo. She says the initial ct showed no metastisis. I was hoping there would be no node involvement but the 14/17 scares me. I'm so scared to lose my mom... I'm not ready to live without her. Is there anyone with TN IBC that has survived? What can I expect?

Moderators

starhs3, we're sorry to hear about your mother! Another place you might want to post your question is in the very active TN forum, here. You can also read much more about TN on the main Breastcancer.org site, in this section: Triple Negative Breast Cancer.

Judith and the Mods

debbie6122

Starhs3- I'm not TN but wanted to say how sorry i'm about your mom. You are a wonderul and caring daughter for coming here for guideance for your mom. You will find great comfort, advice and support here in the forum from some wonderful ladies, in addition to what the Mods already told you, there is also a thread here for women with breast cancer AND ms- If you go to the search engine in the top right hand cornor and type in " Breast cancer and ms" you will see a list of threads to click on. I dont know much about your moms DX but there are great treatments out there now, and women who have been doing well for a lot of years, it is treatable. You and your mom are in my prayers.

Hugs,

Debbie

chester2010

Starhs3 - I'm so sorry to hear about your mum being diagosed with IBC and having MS also.  It's so unfair that she has to battle two nasty illnesses.  You are a great daughter to be looking out for her and asking all the questions.  I am not triple negative but I did have 37/37 positive nodes which of course threw me for a loop.  Everyone was very surprised at this diagnosis but it's 2 years since I was diagnosed and I am doing very, very well even though I will always be on some form of treatment. Do try not to think that you are going to lose  your mum soon.  There are many different forms of  treatment and maybe the doctors can help with some pain management for her. It is a rough road but you sound very strong and can help your mum.  Best of luck and keep in touch. We're always ready to listen and help if we can.

Kathy

ibcmets

Star,

Just want to give you a cyber hug.  Sorry about all that your Mom is going through.  I'm ER+, but I was hit with all 3 at once (ibc, idc 3.5 tumor & bone mets) back in 6/09.  I've done really well with treatment & surgery.  TNBC usually are on more chemo than those with ER+, as we can later go on AI's.

Wishing your Mom good results from her treatments.

Terri

kameli16

My mom has just been diagnosed also. She had her mammo 11/11/11. She waits there for results - well came back with something and they did ultrasound and biopsy same day. Call on following Monday that lymph node came back with breast cancer cells. Back on Wed for MRI and more biopsies. She chose to have double mastectomy which was done 12/3. Came back with 8 positive nodes out of 11. I feel exactly the same way as you. My mom is my best friend.. I call her on my way to work .. on my way home.. we have such an amazing bond and I am finding this very difficult. As I am writing this she is at Upstate Medical in Syr. Having her bone scan and body scan. She goes back this friday to get results and figure out chemo schedule. I pray to God that it has not spread somewhere else. I'll be thinking of you.. we are going through the same journey.. I hope we both have happy endings=)

starhs3

Thank you to everyone for your support!

Debbie- I will look that up... Thank you. Your support is so appreciated and I hope you're doing well.

Chester - thank you for sharing your journey. It gives me hope to talk to all of the survivors on here. It's great to hear you're doing so well.

IBC- thank you for the support and I'm sorry to hear about your DX. Glad to hear you're doing well after surgery and treatments!

Kameli- so sorry to hear about your mom. This is such a terrifying experience. My mom is having a ct soon and starts radiation as soon as she is healed from her mastectomy. Wishing your mom the best... Stay strong. I've researched a lot and even if they find mets she can survive this. Keep us informed on how she's doing.

Thank you again to everyone... My email is sometimes quirky and I hadn't received any notification about responses on here... So to find all of your responses was so encouraging. I don't talk to anyone in my family about how I'm feeling because I don't want to burden them with anything extra... It gets hard keeping everything to myself. I have nightmares almost every night and find myself crying myself to sleep a lot.

How does everyone else deal with the overwhelming stress? Any tips??

Hope everyone has a Merry Christmas!

debbie6122

Starr- So glad to see you post again. You should have someone to talk to, especially now with all the stress of whats going on, You and your family are going through this too, I 'm sure your mom knows how upset your are, if it were my mom, i would probably want to let her know how worried im, maybe not to the extint i would be, but open up too her, at least that my opinion. Do you go to college where you might talk to a counsler? Im sure your dad is feeling the same way maybe you both should have a nice quite talk about whats going on, sometimes it does help to let it all out.

How do we deal with stress? Well, its not always easy, but it does get easier. Im 2 years out and doing great, try to keep busy, do things with your friends, go out and have a good time your mom wouldnt want you home crying, i know its hard but it will help and mean a lot to her too.  Sending you great big hugs, I hope you have a merry christmas too, try to enjoy the holidays! ((((hugs)) Debbie

chester2010

Kameli16:  I'm so sorry to hear about your mum having to deal with this awful cancer but you will be there for her and keep her strong.  It is a rocky road but there are many of us who get over the treatments and live good quality lives for many years. 

Starhs3: You've had a terrible shock learning about your mum's cancer and it takes some time to process things but you can't keep it all to yourself and cry by  yourself as that is not good for your own health. Your mum needs you to help her to be strong too but you should share your worries with someone.  All the same, try not to think about the 'what ifs' and try to think of the positives that there are good, knowledgeable doctors and better treatments    I know this is not easy, especially at night when the worries take over.  I know how you feel as I always put on a brave face for others.

Blessings to all of us over the Christmas holiday.

Kathy