You are in the MOST scary part---waiting for pathology and treatment. I'm there too. I have stage 1 breast cancer, but my 2nd area was just (today) diagnosed as also cancer. I think that may mean a masectomy on Thursday. DANG!! OK, try to remember there are people out here for you to communicate with. I don't go online everyday, since once and awhile I take a cancer day OFF and do other stuff that is fun for me. I have found people on this website to be very supportive. Plus, you can let your emotions out without fear, cuz we are all going through the same terrifying process. We are out here for you! HUGS!!!! Share with us! Warm thoughts to you from Seattle!
Triple-Negative Breast Cancer, Lobular Questions
Looking to make friends and share stories about breast cancer, the battle and surviving.
Asked by jennt4211 on Tuesday, December 27, 2011
Looking to make friends and share stories about breast cancer, the battle and surviving.
Kinda wonder how much support I will really get here? I haven't had a lot of interaction and not real sure how to go about reaching out either. I am scared about whats to come but hopeful and positive about fighting this cancer.
I haven't receive my pathology reports yet. I will on the 6th. From what I understand I am stage 2II. I'm nervous about treatments and my living situation is really hard. I don't have a lot of support where I am living. It is a temporary situation until I get approved for disability. Until then, I have to keep my emotions held in most of the time and its getting very hard to do.
15 Answers from the Community
Feel free to contact me anytime. I am also looking to make friends who can understand what I am going through. Since I am more then a few steps ahead of you, possibly I may be able to pass on a few tips. I had a double mastectomy the end of October. I am now undergoing chemo and breast reconstruction. I was very lucky that I have a neighbor who had gone through this a year and a half ago. She is doing great !. She gave me a lot of little tips.
This is the first time that I am on this site, I need to learn to navigate. If you can't find me here you can e-mail me at [email redacted] Good Luck
Thank you for responding. I did just click to follow you and would love to get to know you more.
How are you feeling since the surgery, and with the chemo? Will you need radiation too?
I was told I would be getting both. Not sure in which order. I go to the surgeon on the 6th and should know more then. I will have to make appointments with 2 separate oncologists after that appointment. A bit nervous about the treatments.
I'm pretty new to the site as well. I joined not long after I was diagnosed but wasn't sure how to go about getting around to meet and talk others.
Someone who runs the site told me to post a question so that I would get more communications. She also recommended a few people that I would benefit from talking to. You can check out who I am following if you want.
Here are a few ladies that have been really great to talk with:
Hope that helps. I am here if you want to talk. Look forward to talking again soon.
oh man - the waiting part - all the appointments - the huge learning curve ... you are in the toughest part.
chemo sux - no doubt about it - but once everything gets moving, you feel like you are DOING something, which helps to ease your mind....
are you sleeping? i slept an average of about 2 hours a night in the beginning... eventually, i got some meds from the doc to help me sleep. i was running on empty.
i'm 14 cycles into a 16 cycle chemo regimen... only TWO TO GO!!!! oh my gosh - the light at the end of the tunnel seems so close yet so far away. then, surgery after that. is it possible for you to do surgery second? the reason i ask is that then you and your docs will be able to determine if the chemo is working... i.e., they will be able to tell if the cancer is responding to the treatment. this was huge for me... to know that the cancer is resonding - that it is shrinking away - that helps my mental health to be sure.
and feel invited to contact me via email - there's a link up there - you can send a request for an email.... then, the person gets your email address and can reply to you. that works well, and it protects us from people using our emails to spam and so on...
hugs hugs hugs - i hope you have some friends or other people who can just show you some kindness and gentleness... i'm sorry that your living situation is not so good.
Thank you for the very nice reply. You're right the waiting is tough. I just want to get this going and done.
I had a lumpectomy on the 12th, and an axillary lymph node dissection. From what I understand so far, I will receive radiation and chemo (by pill). I just don't know what will be first and such.
I'm on medication for bipolar disorder and anxiety that helps me sleep so that's good. But I don't sleep through the night like I use to. I wake up in pain mostly because of the lymph node dissection, and the fact that I sleep on a cheap futon. Hopefully I will get approved for disability real soon and can find my own place and have a bed to sleep in. It can't come soon enough. I worry about going through treatments and trying to recover on a futon in someone's living room.
My kids are doing their best considering its hard for them to know I am sick. I have some friends online. I have one friend nearby that I can talk to but that is about it.
So very happy for you that you only have 2 more cycles. I bet you are excited and elated to have this over with! Please keep in touch with me. Everyone has been so supportive and inspiring to me here and I am very grateful for that!
Hugs back atcha!! And a big thank you!
Nothing is worse then the not knowing. I know that I tend to let my imagination run wild. Because of your living situation, the best advice I can give you is to be prepared. The more things you have in the house..the easier it will be for you. I hope that you have a few close friends that will be able to help you out a bit. You will need someone to bring in food and other staples.
A dear friend of mine who is a cancer survivor herself, made me a get well basket. It had all these little things in it that I wound up really appreciating.
Biotine..mouthwash.......very important. My first side affect was horrible dry mouth, which can lead to mouth sores.
Chap stick......I would be crazy without it. For some reason my lips are so dry, they crack.
Saltine crackers.......thank God, I have been so lucky, I have not got sick once. If I feel a tiny bit queasy, I eat a few saltines.
A sleep cap and a soft turban. Sadly, almost all of us lose our hair. I had bought a wig before my second treatment. But the day I lost it...it went fast and furious. My scalp was sensitive so I was so happy to have the soft turban to throw on. By the way.....it is not such a bad look with big earrings and a nice shade of lipstick.
Hard sucking candies.....they make you produce more saliva.
Be sure to have a gentle laxative. You don't need any other problems. I was allowed to take Aleve with my Chemo. Ask your doctor what you can take for pain if you need it.
Take things a day at a time. Nothing was a horrible as I thought. I won't lie to you, recovering fro the surgery was no walk in the park. I have the expanders in my chest, stretching the skin to make room for the implants. They really bother me. (but...my new breasts are looking good)
The chemo, that I was deathly afraid of.....has been easy. Seriously, they give me so many anti-nausea drugs, I have never been sick. I am praying it stays like this. I am goig for my third treatment tomorrow.
I will also need radiation afterwards. I am not even going to think about that now. ONE step at a time.
What keeps me going is knowing that we are LUCKY yes LUCKY..just look on this site. So many people have it so much worse then us. Stay strong.
Warrior.. I am very worried about my living situation. My kids will do their best and my friend next door. But, that's about it. The people I am living with are my daughters in-laws. They are very insensitive and rude at times. My kids really don't have the means to buy much for me. I will make a list of things you mentioned and see if we can get them meanwhile.
I have a few friends that want to help out, and take me out of the house. But, with my bipolar, the depression is at an all time high. I become like a hermit and find any reason I can to not go out. I hate the way I look already. I cant wear any of my clothing because of the bipolar meds making me gain weight. I just want my own place where I can be comfortable but I have to wait. Its hard.
I do have an escape nextdoor when I need it and dont have to worry about what I look like. I know the other friends wouldn't judge me either but I don't know them as well. They are old co workers. The are use to seeing me in business clothes and looking nice, not dumpy and in pajamas or sweats. Its all how I am feeling.
Very happy for you that you are liking your implants. I didn't lose my breasts this time around. Left breast had the lump and is still a little swollen from surgery. They said I would have a dip there but thats it.
As for my hair, I need to start stocking up on some turbans and such. I didn't think about something to wear for sleep. And I didn't even know about the dry skin and such. I already have psoriasis so I imagine that things will get a bit worse once treatment starts. Thank you for mentioning it so I can prepare.
If there is anything else you can think of that I should get, could you let me know? You can also email me at [email redacted].
So sorry you are having such a rough time, I HATE this rat-b****** disease. Get some more info under your belt and that 1st chemo and you wil feel so much better. This whole thing isn't easy but chemo and rads were NOT as bad as I expected. 2 weeks ago I would have had more positivity to share but am still reeling from an unlucky roll of the dice.
Spoil yourself, take care of yourself, give yourself a break.
If you want to e-mail me I will respond, been spending a lot of time online.
Wishing you the best of a bad, hard situation,
jennifer - wait for this.... are you waiting??? wait for it....
i have eczema... and since treatment, i have had NEARLY NONE! i also have asthma... and since treatment, i have had NEARLY NONE!!!! these things are related - apparently, chemo knocks down immune system issues - like eczema, asthma... and hopefully psoriasis!
so.... there's a very good chance that your psoriasis might actually IMPROVE on chemo! sounds nutty... right? but it's one big mighty plus in my book.
so, try to be optimistic about that one... becuase you might very well be psoriasis-free....
i'm hoping for that for you!!!!
Leepenn... funny I was thinking about that with my psoriasis. Didn't even consider the asthma improving. I have so many imflammatory issues and am hoping that the chemo will help ease up. I didn't know about that until I read something about the steroids. Thank you so much!
Jamrck, thank you so much. you're right I shouldn't worry about what others think and get out with the people that do care. Its part of the battle with the mental health but I am gonna try. I think after this Friday when I see the surgeon and get my pathology reports, I will feel better knowing what the plan is. I am just so focused on getting started and getting it done. But, I should try and focus on other things so I don't worry so much.
And you're right on about the meds.. I guess the few pounds is not the big thing here. I will keep on taking them as I do. Thank you again!
I would like to be your friend and tell you about BCTeam. They are wonderful. It's set up wonderful and you can create your own team and write each other all the time. Check it out.
I'm on it and love it. Cancer is definitely a battle and all about surviving. I see that you wrote this a long time ago, and I hope you are still on here and able to check out the BCTeam. Please write me and let me encourage you. I went thorugh everything. chemo 2x surgery, radiation, and now have 3 degenerated discs with horrible pain. But I am better now and off the narcotic medication and on lesser pain medication. I still can't stand more than 10 min. and have a little trouble walking. But I am getting better and better and want to give you hope. Tell me about your experience. I will write back. Blessings and hugs. Lavenial