Living in Fear

dyna1883

I was diagnosed with stage 2 breast cancer at the end of 2013. I had two rounds of chemotherapy, radiation, and a lumpectomy. For some reason the chemotherapy did not work for me. The Cancer actually grew larger during my treatment so they put me on hormonal therapy instead. Apparently, it isn’t common for chemotherapy not to work. I was an exception to the rule.

I was feeling good about being cancer free for five years at the end of the year. I dreaded the yearly mammograms and they would cause me a lot of anxiety. For some reason I didn’t this last time, but I should have. I was waiting for the results of my mammogram only to find out that they wanted to do an ultrasound. Not the first time this has happened so wasn’t really worried. They said they found some calcifications that looked suspicious.

I waited hoping to get the “all clear” but that didn’t happen. My breast specialist and the doctor that was in charge of reading my mammogram came into the room and told me they needed to do a biopsy. They looked very concerned. My breast specialist told me often that the Cancer comes back more aggressive and we needed to worry about mestasis. I couldn’t believe what I was hearing. I decided I didn’t want to mess around and get the biopsy done at once.

The next two days were the longest days of my life. I felt sick to my stomach and couldn’t eat. It was hard to even function because of all the anxiety I was feeling. Statistically the odds were in my favor. 80% of biopsies come back benign. I had only a 3-5% chance of a local recurrence. The odds were in my favor. What was I worried about???

My doctor called me two days later and told me that the Cancer was back. This time it was noninvasive ductal carcoma. This was the same type of Cancer as last time. I was elated at first because this is an early stage 0 Cancer. That it wasn’t aggressive. It was contained. At least I wasn’t going to die right? I called everyone and told them not to worry downplaying everything that I was going to be fine. No big deal.

Since then I’ve had a few doctors appointments and an MRI. I have decided to do a single mastectomy in about two weeks since I have already had radiation the first time. I feel like I was doing pretty good emotionally until recently. I keep thinking about the statistics and what shitty luck I have. Most people use statistics to make decisions about their health but I feel I am always the exception to the rule. It’s very frustrating. I am only 44 and was barely 40 the first time I was diagnosed. I worry if I will make it to 50. I worry my husband will be a Widow. I know I have no reason to but I can’t help it. Am I going to live my life in fear forever? I felt once I let my guard down the Cancer came back. I worry about the quality of my life if I continue with this mindset but not sure how to get past it. I find myself downplaying my recent diagnosis to everyone because I feel bad and I don’t want them to worry about me. I feel alone and that no one really understands what I am going through.

I_Spy

Hi Dyna,

I know a lot of members who've had recurrences are going to jump in here and let you know what to expect and share experiences with you. I'm currently trying to figure out if I even have a recurrence, so I understand the fear and worry that you're talking about.

You have every right to feel how you're feeling. It's scary, and we face our mortality more than most people. Realistically, everyone is going to die of something, but other people don't have to think about it all the time, right? Quality of life is very important, and I'm not going to lie: I've had thoughts about what I would be willing to put up with as far as side effects from treatment, and what I wouldn't be willing to put up with. So I'm with you.

In Dr. Susan Love's Breast Book, she said something that helped me a lot. I will paraphrase here, but she basically said that her patients always want to know when things will get back to the way they were before, when things will go back to normal. And she tells them: things will never be like they were before. It doesn't mean they can't be good; it just means they won't be like they were before. Cancer changes your life. Once I realized that, it was easier to roll with the changes.

And the other thing is that this is just the price of being alive. It sounds like up until now you've continued to have a decent quality of life. Well, that's because you found your cancer and you went through treatment and you got to the other side of it. So you're alive. Now the cancer has come back, and there's nothing to say that you can't get through it again: have the treatment, get to the other side, and have a good quality of life. Staying on top of our health, whether it is finding and treating bc, or diabetes, or heart conditions, is just part of constant willingness to fight against death and staying alive so we can relish the good parts of life.

I had a BMX and it was certainly no walk in the park, but you can handle that or a Uni, whatever you decide. There are a million posts on here about what to bring to the hospital, how to set up your house so you can recover well, etc. etc. I live alone and my brother came for a few days but then I was on my own. I too am independent and I kept my independence. You can do it.

And we'll all be here when you need to talk.

wallan

Hey there:

I feel for you. Having a recurrance at any level is a kick in the teeth. I know when I had a recurrance in the other breast after 13 years of NED, it levelled me emotionally. My recurrance was stage 1 with no nodes and doctors assured me "not that threatening". Even my oncologist told me she wouldn't even treat this "non-threatening" BC if I had been over 65. I am 55. Yet, I felt terrified, stupefied, bewildered and I walked around in a daze with a "I can't believe I fall on the bad side of the odds". I thought, "how can I trust in any statistics or treatment ever again?"

Its been about 17 months now since my recurrance. I am still "recovering" emotionally from all this and I do believe my life will never be the same again. After my first bout of BC, I thought that too but as the years went by with no recurrance, I did get back to normal. This time, not so much and I now know BC or any disease could rear its ugly head at anytime. I get the meaning of "there is no guarantee." My family does not understand. They think I am fine. My co-workers also think that. They say BC is no big deal nowadays. But it IS a huge deal to us that have it. Our mortality is shoved in our face. And the uncontrollable, unpredictability of the disease is shoved in our face too with an unexpected recurrance.

You have been rocked and it is natural for you to be reeling from this.

Sending you cyber hugs and much love

wallan

Snickersmom

Oh man, you all hit the nail on the head for me. I had a BMX May, 2017 so I have a long way to go. I worry all the time that it will come back or show up somewhere else. I think my oncologist must have the patience of a saint to put up with me always questioning him about it. Ispy, you are so right - we can never ever go back to what was normal before that diagnosis I am told often how wonderful I look, what a strong person I am how great that my tumor was "only" a Stage 1A, how "lucky" I am, etc. They have no idea. I thank God for all of you on BCO. You truly have been a lifeline for me. I pray all the time that I don't ever hear those words again.

Hang in there and take it one step at a time. We've all got your back. Sending you lots of love and a big hug through the airwaves.

Ann

DebAL

good morning. I agree with all of you. Others don't really 'get it' and I hope they never have to. Now that I'm at "the end" of treatment with my first diagnosis ( except for taking the "pill") I find myself more worried about recurrence. It also gets under my skin hearing how strong I am or how good I look and how lucky to be stage 1. When it comes to recurrence nobody knows what the future holds and I guess we will never feel "safe" again. These feelings for me ebb and flow. Out of the blue I can feel so down. Other times I go for days without giving cancer much thought and I question whether I grieved properly. I'm thankful for all of you. Knowing that at any time, day or night, someone (unfortunately) understands and is there for me. I'm sorry we all are going through this.

dyna1883

Thank you so much for all of your responses. I’m sorry that all of you have gone through this and I appreciate your understanding. I will definitely check out the section about what to bring to the hospital. I can’t believe my surgery is already next Friday. Yikes

dyna1883

Wow! I can’t believe people think breast cancer is no big deal!

dyna1883

Thank you so much! :

KBeee

My recurrence was harder mentally than physically. I was grateful that it was local and not metastatic, but it still was such a punch in the gut. I found that once the plan was in place for treatment, I went into “fight" mode, which was easier.

The tricky part is that like you, I felt that my recurrence happened when I let my guard down. It is hard now to let me guard down. Despite that, life is good. I savor every minute with my kids. I try not to let cancer take more than it already has, so I try my best to move forward. There are challenging moments, but I deal with those as they come.

You CAN do this

I_Spy

Dyna --

Here are my top tips. I have a million of them, but these are my top. Don't be overwhelmed by them. This will all become familiar and you'll be an old pro in no time. I've had 9 surgeries or procedures that required me to be hospitalized (not just breast cancer), so I have staying in a hospital down to a science:

1. Bring a small purse or bag with a handle, like crossbody kipling type of bag, with a carabiner ring or some other way to tie it to the bedrail. This is where you put your phone, your headphones, your chapstick or Blistex Daily Conditioning Treatment (very dry in the hospital), and your earplugs and your eyemask if you're staying overnight. It is so loud in hospitals but with earplugs and eyemask I can sleep. Download the Sleep Pillow app for free to your phone. It has white noise (like fan sound or rain); you put the sound on in your earphones and sleep blissfully until they wake you to take your vitals haha.

2. If you have a couple of drains draining fluid from your chest, which you probably will, don't let anyone including yourself touch them without gloves on. Drains are the reason we can leave the hospital earlier than we used to: when you take something out of the body, the body fills that area with fluid and that fluid can breed bacteria and create infection. The drains allow the fluid to come out of your body. You'll get used to it. But even some nurses in the hospital tried to touch my drains without gloves on and I had to tell them not to (or tell them to change their gloves if they touched something in the room and then tried to touch me). The drains lead directly into your chest. I consider my insistence on no touch without gloves the reason I made it through without infection. Doctors and nurses can forget that the gloves aren't just to protect them -- they're to protect us. Be polite, but insist that they wear gloves before they touch you. And then buy a box of gloves from Amazon and have them delivered to your house, so when you get home you don't touch your drains or incision without gloves on.

3. My plastic surgeon and breast surgeon insisted on a very tight compression bra for the entire time that I had drains in (I woke up wearing it). I feel that this is another reason I didn't get an infection -- the compression is constantly forcing fluid out of the chest and down into the drains and out of your body. No chance of pooling fluid in your chest, which breeds infection. Your doctor may have other plans (not sure if you're having reconstruction and that might change it a bit), but that is what I've figured out from my experience.

4. Learn the nurses names: pre-op nurse, operating room nurse, anesthesia nurse, post op nurse (harder because you're drugged haha) and hospital room nurses. Use them a lot with "thank you", like "Thank you, Ann, I appreciate it." A lot of times their jobs are thankless, and just recognizing them as being a person goes a long way. They will repay you with extra kindness and affection and finding you your favorite flavor of jello.

Okay I hope that wasn't overwhelming. I think those points made a HUGE difference in my hospital stay and my recovery without infection.

Keep us updated!

dyna1883

I totally agree that the mental part has been way harder than the physical so far. I may say differently after the mastectomy..hopefully not

dyna1883

Thanks so much for the list! Does anyone know if you're allowed to wear nail polish?? Wanted to go get my nails done pink before the surgery to cheer myself up.

Snickersmom

I was not allowed any color nail polish, not even clear or light pink. Also no makesup. For my hospital stay, I only brought my makeup (of course!), toiletries, and clothes for the next day. It was May and so brought rcapis, underwear, and a loosefitting button down shirt/blouse. The hospital supplied a terrycloth drain belt. That was it except for sneakers and socks. My husband stayed with me. I had a private room with a Murphy bed for him. The hospital and staff were fabulous. University of Florida/Orlando Health Cancer Center is the BEST!

I_Spy

The nail polish thing is old school from when anesthesiologists had to use the color of your nail beds to see if you were getting enough oxygen. Old habits die hard, even for hospitals! Here is a photo of my toenails when I went in for my bilateral mastectomy, feel free to copy me:

dyna1883

Love it!

Snickersmom

When I had my BMX last May, I had just had my fingernails done. I don't think UF Orlando is old school - and my best friend's son, who is a Chief of Staff at Dana Farber in Boston, said the same thing when I questioned him. He said it's up to the hospital.

KBeee

To measure the oxygen in your blood, they use a pulse ox device which shines a light through your finger. Some work better than others at accurate readings through nail polish

I_Spy

Yes and I wasn't insulting your medical center Snickersmom! I don't remember if I had fingernail polish on, but my hospital said I couldn't wear nail polish on either my fingers or my toes. I knew the anesthesiologist who was doing my surgery and asked her and she said it was fine. No matter what we say on these forums, one must always check with one's doctor.

I_Spy

Dyna.... did you have surgery? How did it go? How are you doing?

dyna1883

Hello! I am 9 days post surgery and I am doing very well. Everything was going smoothly until I got my pathology report back and they said they found a small area of invasive cancer. My doctor didn't take any lymph nodes because she didn't think she had to. Now, I have to get surgery again so feeling very frustrated and worried. I am hoping that everything comes back clear with the lymph nodes. I find out more information at my doctor appointment on Tuesday. If anyone has any questions about the surgery let me know.

I_Spy

good girl you got through it! Did my list help?

I have to say: my surgeon was going to do a sentinal node biopsy with my BMX for recurrent DCIS, but I told her no. I wanted to gamble that the cancer wouldn't be invasive. I lucked out and it wasn't invasive. If it had been, I would've been in the same boat as you. So, goodness, life is full of decisions and you have to just play the cards you're dealt, right? I just found out I have infiltrating basal cell carcinoma on my chest right above my reconstruction -- but it supposedly has nothing to do with the rash on my MX scar! I'm so confused right now my head is spinning. I have to have surgery because the biopsy didn't get all of the cancer. So, yea, we play the cards we're dealt.

But okay did my list help??

dyna1883

I am very sorry to hear about your recurrence. Keep me posted on your condition.

I slept every night in the hospital with an eye mask and ear buds and it really made a difference...so yes your list helped! I also can’t believe how dry your lips get in the hospital. Glad I brought some lip balm too. Something I wouldn’t have normally brought.

I_Spy

Well, fortunately it isn't a recurrence of breast cancer, it is a new occurrence of skin cancer. Well, maybe "fortunately" is the wrong word haha, but anyway there it is.

I'm so glad the list helped, especially that the earplugs and the eye mask worked! And the lip balm -- if I were on a deserted island (and what is a hospital if not a deserted island) and could only have one product, it would be Blistex Daily Conditioning Treatment. I have them all over my house! When you go back for your nodes surgery you will be an old pro.

Yes, I'll keep you posted. And let us know periodically how you're doing. Let us know what happens at the doctor on Tuesday.

dyna1883

I will admit, have been pretty angry with my husband’s family because he has been working from home caring for me, his four kids (my stepchildren), cooking, the housework...meanwhile his Mother who lives in town continues to carry on with life as usual having a good time traveling with her friends not around. She promised before my surgery she would be here to help support us with anything that we needed. I have a lot of anger and am having a difficult time managing it.

I_Spy

That sounds very inconsiderate of her. I live alone, and you really do see who your real friends are. Don't get angry over it. It sounds like this is a failing on her part and you getting upset about it won't change her -- it will just affect your healing.

That all being said, sometimes people need to be asked to do a specific thing. Like: "Can I give you a list and some money and you go to the grocery store for me?" If you don't ask for specific things, they don't know what to do to help.

koshka1

Dyna.... after my breast cancer surgery my sister n law came over to visit.... guess who made dinner for her and my hubby?

Me. I will never forget laying on the couch with my boob wrapped up looking at them...Well I guess I’ll get up and heat some of the food I had pre-made.

10 years later I am still pissed off about it.

dyna1883

What is wrong with people? I can’t believe that

People will never act the way you expect them to I suppose. Like I Spy said you have to sometimes be specific with requests. My husband just gave his Mom a list yesterday of things to do, one of them is bringing us over dinner one night..haha.