Scared and triple negative

Tonya36

Hello everyone.  I have been looking around for a couple of weeks but am just now getting the nerve to speak.  I was dx on 06/05 with idc to left breast.  Had mri, genetic testing (with no results yet) and a pet scan that came back negative THANK GOD!!!  I then had bilateral mast on 06/23 with expanders put in.  I am still having trouble finding a comfortable sleeping position but my main complaint is lower back pain.  Since Monday I have had severe low back and hip pain that sometimes goes down my leg.  My friends think its because of the way I have to sit walk and lay because I am sore but I am not so sure.  I know I had my pet scan just 3 weeks ago but the more I read about this horrid disease and the triple negative part of it the more I am scared of bone mets.  I am crying alot of the time these days.  I don't know what to do.  Anyone have any words of wisdom or hope?  I could really use some help today.  You all seem so strong and positive.  I am almost ashamed to come to you for help but would appreciate anything you can give me.  Thank you in advance.

FloridaLady

Welcome Tonya,

I'm glad you decided to post. I wish I could give you a big ((hug)) and have a long talk with you in person.  Please understand we all have times we are scared.  It can happen any time, at diagnoses, during treatment and even after treatment.  This is part of anyone's cancer journey.  But please remember...one day you will be giving other advice about how to get through this difficult times.  Hang in there! Thing do start leveling out once you get in treatment. Please start reading about cancer survivors, how to handle side effects of treatment and how to play this mind game.  As you have found out a big part of cancer is the mind games we endure.  There are some wonderful books out to help you stay focus on handling fear and getting through this and getting back to your life. Try and find a GOOD support group.  These ladies can be the best medicine.  Ask your doctor or other patients were to find them.  American Cancer Society can also direct you to one.  Please find a friend who may not be close too family that you can talk openly with, who does not judge and who will not go back to you love ones with what you have openly spoke of to them.  This is hard on your love ones too...please do not shut them out, but they may not know how to best support you right now.  They need time to figure out the best way to help you.  Please let other do big or small things for you, this gives them a small chance to be part of this with you.

Great new about your PET scan results.  Did you have any lymph node involvement?  I take it they are waiting for your Genetic test before deciding on treatment?  As for you back and hip pain...are you taking alot of pain meds?  I hate to ask but...Could you have constipation?  Pain meds can really give you big problems. You maybe going but not enough. Try SenkolS over the counter it does not give you cramps. Tonya...it sounds like they caught you bc early.  Triple Negative in early stages rarely wants to go to the bone.  Triple neg seems to like lungs and liver as it choice of mets.  Also remember PET scans work really good with TN because of the high activity we have.  So if you had a clean scan so soon please keep in your heart that you have NO activity disease.  And I'm also think if the doctor has seen something in the bone you would be in treatment ASAP.   

The sight is quiet this weekend.  Please wait and see all the lovely ladies who will belong to hold you up with their strength and show you how to dig deep and find your own inner strength.  YOU CAN DO THIS TONYA.

Sending prayer to you, for God peace and sheltering wings to hold you in this dark time that you are PASSING through.  Better days are to come...

Flalady

Tonya36

Thank you so much for your reply.  Its nice to know that the PET/CT is prob correct.  My friends keep telling me it is but I know that is what they want to believe.  Its so nice to hear from someone that has been where I am.  Thank you for what you do.  I have ready many of your posts while on here looking around and you seem to be a wonderful person.  My genetic test took too long to come back so I went ahead and had mast.  I did have snb and it was negative...again THANK GOD and the bs also took out 3 other lymph nodes (because they were in the way) and they were negative also.  I had a 3cm tumor that was taken out on 06/04 because the surgeon just knew it was a fibroadenoma but it wasnt.  When mast was done they didn't find any residual signs of tumor in that breast and the other breast was clear also.  I know all this has been good news yet I am so frightened.  I am 36 years old and I guess I was silly enough to think I didn't have to worry about my health or mortality for a while.  A little naive huh?  Anyway thank you again for your response and support and I look forward to talking to you and the others soon.

TenderIsOurMight

I have IDC ER+ breast cancer Tonya, but wish to share that I always view the lower back as human's weak link in our armor. It is so susceptible to injury, to inherited bone narrowing, nerve impinging, disc protruding activity that by middle age, something like 50% of us have documented changes on MRI, especially disc protrusion. And the pain and/or chronic discomfort is often very challanging. All of this of course can raise much ruckus in the face of a new cancer diagnosis. So it's always wise to get it checked, but as FlaLady states, many times it is related to other diagnosis not cancer.

 

You are very gracious in your words to a dear sister who has shared much insight to you, and I can add little. I just wish to say I understand your angst and hope to dissuade you from ever feeling embarrassed in sharing your true feelings here. 

 

So happy to hear your news that your cancer is localized. I wish you strength and hope you will post as you undergo your next step in treatment.

 

Best to you,

Tender 

Gitane

Tonya36,  I just read your post today, so this is a little late.  Anyway, I just wanted you to know that there is probably not one single BC patient who hasn't been terribly worried that a pain somewhere is a recurrence.  The back pain, especially, is common.  Post surgery seems to be a time when we worry because we sleep differently to avoid pressure and pain, we have aches and pains related to treatment, and we probably are responding still to the meds we were given or are taking which change our bodies, the way we sleep, and consequently our bones and muscles.  Asking your doctor to check things out is never wrong.  You were right to come here.  The people here are so helpful.  Don't hesitate to ask your questions and above all share your feelings.  We are here for each other.

FloridaLady

I received a email from Tonya and it was some serious constipation and stomach issues.  She did get into the doctor and they gave her meds this week.  I'm glad it was nothing more serious.

Flalady

Sable1

Hello, I've been reading on this sight for the past week and thought I would post. I am scheduled for a lumpectomy an Tuesday and very nervous. My question is about triple neg. I had my first meeting with my oncologist on Thursday and found out that I'm triple neg. I had so many questions I didn't think to ask was that means, I then saw this thread and it now concerns me a bit. can anyone give me a little more detail.



Thanks, Sable

FloridaLady

Hello Sable,

Triple Negative means, you are negative for the hormones ER and PR also the protein Her2. What this means in the breast cancer world is you do not have the special drug that were developed for hormones positive bc (tomoxifen) and Her2 (Hercepton and special chemos). These are maintenance drugs they get to use after chemo, surgery and radiation. 

I hope you saw the ongoing wonder posting for "Were are all the triple negs" there are wonderful stories out there.  After the your surgery they will know more about your tumor.  They will stage you and also tell you how aggressive your kind of bc maybe.  Then you will get your battle plan ready and get all the cells out of your body and get back to life.

Wishing you gentle surgery and treatment.

Flalady

Tonya36

Hello everyone.  As FlaLady explained I did go to doc and he did xrays to find out I do have some constipation.  I was sent home with Miralax.  The next day the bs told me to drink mag citrate before it got any worse and I do have some relief.  Thank you all for your postings.  I meet with my onc on Wed for the first time and I am very scared and emotional today.  I am sure I will be right back here for advice after that appt.  Thank you all again for your support.