feeling scared

tanya01

I am having a little bit of a rough week. For some reason this weeks seems to be harder than most. I was done with chemo on Oct 13 and I have my first follow  up visit in Dec.  I have recently been having some minor pains under my right breast.  Keep in mind I also had a double mastectomy.  The best way I can explain it is the pain is right where the underwire of your bra would sit if I wore one. It doesn't hurt unless I touch it. Its seems tender and maybe a little bit inflamed.  I feel like I am going crazy I can't stop thinking about my cancer coming back I knit pick at every ach and pain. How do the doc know if you have recurrence? Does it show up in your blood or is based on symptoms and then you get a scan.  I think I am driving my doc crazy.  I have thought about support groups, but im not good at talking about how I feel in a group of people.  I just don't know how to live my life with knowing the cancer could come back. It just doesn't seem fair that we beat it once and we may have to do it again. I have not found anyone that has the same cancer characteristic as I do. I am BRACA 1 positive,  I was stage 2a no nodes involved  EP+ ONLY 2% So technically neg. PR- Her2-. My sister is also positive for the BRACA1 gene. She is only 22 and is getting ready to have a preventative double mastectomy next month. All I want to do is try and live a normal life and I just can't seem to get that moving

sandiessoldier4

Tanya,

I work for an organization called Oncology Rehab Partners. It is a program that trains clinicians and staff members who participate in survivorship care to be cancer rehab experts. We then help them implement a program where the team works together to address the needs of cancer survivors with rehab. My question to you is, after you finished treatment, what sort of survivorship plan were you given. Are you receiving any type of rehab since your double mastectomy. Have you been given any education about post mastectomy pain syndrome? With everything you have been through both emotionally and physically, it is absolutely normal for you to be having these symptoms both emotionally and physically but there is help! I am happy to speak with you more about this and provide information to your doctors as well. I can also look to see if there is a program in your area. It is called the STAR Program (Suvivorship Training and Rehabilitation).

You can get your life back!

Elizabeth1889

Tanya, I do not have answers for you.  All I can say is that you are not alone in your feelings.  I finished active treatment in August.  Some days I am fine and I am enjoying life.  Other days, I worry very much about a recurrence.  

sandiessoldier4, Thank you for telling us about STAR.  I will look into it.

mccrimmon324

Hey Tanya,

I don't really have any answers for you but I did notice our stats are similiar.  I finished Chemo in Sept and have my first 3 month follow up tomorrow.  Do I worry about every ache, pain, twinge?  HELL YES!!  This still so new for us.  I've been told time will eventually help us with that.  Why don't you check out the thread "calling all TNS" under Triple Negative, we are all TN's and the ladies there are so supportive.  If it helps you to know, I don't feel comfortable in a support group but I do use this forum and I also have chosen to go to therapy.  Sometimes I think this forum helps more because we can relate to each other. 

Take care and at least call your doctor about your tender area.  I believe and I could be completely wrong but I think our affected breasts will have some pain for quite a while but call your doctor just to be sure. 

thefuzzylemon

You didn't mention if you had radiation..but, the surgery alone (with added chemo poison) will extend recovery processes significantly. Make sure you're telling you docs all of this...

I have to say, this wasn't the road trip that I mapped out....anxiety, insomnia, on going pain management....but, after month of tweaking, I now have the meds that fit me and my needs. If you need help sister...don't wait.

I'm still in that recovery/adjustment stage but I hope this helped.

tanya01

Thank you everyone for your support. and thank you so much for the info on the STAR Program. I am going to look into it.   I just can't seem to get my arms around all of this. I thought for sure once I had my implants in I would feel normal again.  I never imagined that it would be this stressful and consume so much of my life.  My Dr is amazing but I feel like I am driving him  just as nuts as I am. I really wish I could just turn it all off.  I think maybe part of my stress is that I will be turning 30 on the  31.  I had such big plans for my 30^th birthday. It hard to celebrate when you just are not in the mood. You don't feel pretty and all you can think about is the what if's.  I  have heard so many people tell me that I should feel grateful that I am alive. Don't get me wrong I am grateful. But I think that is one of the most frustration things someone can say to you. It's just really hard to talk about all of this with your loved ones, because they just don't get. Most people thing the fight or the journey is over after chemo and the surgeries.. But they have no idea that we are haunted for the rest of our lives with the possibility that the cancer could come back. AGAIN thank you all so much to letting me vent and get my frustrations out. It really makes me feel like I am not alone.  You girls are all amazing!

mccrimmon324

Tanya - feel free to vent.  Your absolutely right, friends and family do believe the fight is over and life should return to normal as soon as chemo ends.  Its just not the case.  In fact last week when I went for bloodwork the nurse asked how I was.  I told her I'm doing well but still think about it constantly, she made me feel better by saying if I didn't there would be something seriously wrong with me. 

Again, check out Calling all TNS, I think you'll find a lot of support there.

pupmom

Tanya, I got my dx 10/18, have gone through surgery, one dose of Zometa and am on an Al. My rads start soon. Although docs and husband are upbeat about my prognosis, I am still terrified. I have been prescribed antidepressants but haven't taken them YET. I will start seeing a psychologist who specializes in treating cancer patients this February. Whether my feelings are rational or not doesn't matter. I have them and need to deal with them. Every day my mind is occupied with thoughts about cancer. I don't like this, but can't seem to find a way out of my mental circular firing squad. That's why I'm reaching out for help.

 Never feel guilty or weird about your feelings of fear. They are totally normal considering the life altering situation you just went through. Take whatever steps you need to deal with this terrible disease and its aftermath. I'm starting to believe that its harder to heal the mind than the body after cancer. God bless, yorkie. 

Racy

I strongly recommend psychological counselling. Being able to talk with a psychologist one on one gives you an outlet to share your thoughts and feelings that you don't want to talk about with family and friends. A psychologist can also teach you strategies to deal with those thoughts and feelings. Your doctor or cancer centre should be able to recommend a psychologist who is experienced in working with cancer survivors.



An antidepressant can also help enormously.



I hope you don't continue to suffer.

Faye33

I totally understand what you are saying.  I just finished Herceptin in April, and since then every ache and pain has had me thinking worse case scenario.  If I called my doc everytime I had a sign/symptom of recurrence, I'm pretty sure he'd get so sick of me he'd kick me to the curb.  I'm mentally trying to adjust to a new "normal" and realize I can't keep jumping to horrible conclusions and worry everytime I ache... it is so hard, and right now for me I have to make a conscious choice to take the wait and see approach.  And 9 times out of 10 the thing I'm concerned about goes away and the other 1 out 10 things I bring up with my doctor and they end up being nothing.

And yes, it is frustrating when everyone tells me that I was so lucky because I was early stage, and to stop worrying because the cancer wasn't in my lymph nodes, so I'm going to be just fine.  I'm sorry, but just because I have one of the best cases of the worse case scenario, does not mean I should just stop worrying and that I'm going to be just fine!

Yes, I get that it could be much worse.  And I'm thankful for what I have, but it just unnerves me when some one who's never had cancer tells me how lucky I am. 

I had my last surgery in August.  A couple of weeks ago I had tenderness and even a little swelling right where my bra hit. I decided to go without a bra for a few days and within a week the swelling and pain went away. I hope that helps you out.

gretagrady

Let me encourage you by saying that through Faith, you can overcome those feelings of anxiety that at any moment, boom!, you have cancer again.  I was just diagnosed in October, and I am still going through chemo.  But I have decided that when this chemo phase is over, that I am going to trust in God for keeping me everyday- as He has kept me so far.  I am on the FAC treatment for my chemo, and it is so terrible.  But when this is over, I am going to walk with my head up and not let fear steal any more time from me.  I'm sure the check ups bring anxiety, but think about how far you've come so far- how so many things could have happen to you and didn't.  When I was going through testing after my diagnosis to see if the cancer was just in the breast, or if it had metastacized(sp?) I kept confessing 1stTimothy 4:7- "For God has not given us the spirit of fear, but of power, love, and of a sound mind".  Every time you go for a check up and receive positive news, this will also help build your confidence and give you peace as well.

catbill

Hi Tanya01, from a neighbor in Prior Lake.  I am sorry to hear you are struggling a bit.  I don't have the same kind of cancer, but I do understand it's scary to live looking back over your shoulder.  It's hard not to wonder if cancer has caught up to you again, or when it will.  I don't remember which BCO thread it was, but I do remember reading that for many women, it takes about 1-2 years before they can feel mostly normal.  I am one and a half years out, and I can tell you that I don't think about cancer as my first thought in the morning any more.  Hang in there, and maybe consider some counseling it things are feeling overwhelming.

(Hugs)

Catbill

bethhoul

Thank you for the STAR information, sandiessoldier4.