How do you get past the fear of recurrence?

9911

Uggg ... "worse prognosis" ... having cancer will do that.

Second primary after 12 years from first DX ... I'll still enoying life. I'm only pissed off the treatments are still the same ... nothing new after 12 years. It doesn't matter how many years out you are. You must do BSE (breast self-exams).

... (((netty46)))

Colt45

Thanks, mepic.



Bless you.

Colt45

@ruthbru:



It's absolutely true that a positive node is a positive node, no matter who says you got it.



My dilemma is "how to treat".



One onc's LRR risk range without rads is 15-20% (then he changed it to 10-20%) for 1-3 + nodes.



The other RO's range for the same was 5-15%. Our MO also gave us the same risk range.



Weighing risks VS benefits is important to us and depending on who we believe, those risks and benefits are a little bit different.

ruthbru

Rads were not that bad. Why wouldn't she do them if they lower her odds? What does SHE want to do?

Colt45

@ruthbru, she has experienced some lymphadema already----not bad----but she went for therapy to head it off... and among other risks, there is a fear of much greater issues with lymphadema as well as the other risks with rads. She's trying to weigh all that against the small benefit she supposedly would get from doing the rads.



She's agonizing over it. I think she's afraid of rads and would rather not do them (face it, nobody WANTED to do them)----but there's that mindset of "throw the kitchen sink at it" even if the kitchen sink doesn't help much and could give you more issues than help...



A lesser concern, though a real one is that she would really compromise her exchange to implants---which she says she's not worried about anymore (potentially losing the implants)... BUT if the rads don't offer much in the way of LRR control, then the choice to do rads is harder, etc.



Risks & benefits.

It's not an easy decision for her.

Colt45

I also should add that I write "we" or "my" when speaking of my wife's diagnosis and treatment----when it's about HER. It's her treatment. Her decision(s). I just support. She wants my opinion, but she has to make the decision that is best for her. I can't do that for her. I don't even have a strong inclination here. This has been the toughest call.

Gai

Thanks Racy

I would love to.  I am off to the US for 6 months in June but I will be back around the 21 November for a visit with my family. Please let me know the details and I will be there

Thanks

Gai

Gai

Hi Colt

It's sad that you have encountered a less than helpful rads doctor, particularly at a time like this when you need all the support you can get.  

Your approach is similar to my own get all the information, weigh it up and make the decision.  Then sleep on it, if you sleep well you will know that you are on the right track for you.  Then take the action appropriate and don't look back or ever judge your decision.  

I had the rads as I had 18 out of 21 nodes positive.  I needed to action ever weapon in my arsenal to just to get through treatment.    

Good luck to you both, and your wife is very lucky to have such a supportive husband.  Sadly, not everyone is that lucky when they go through a cancer experience  

Gai

Gai

Hi Colt

Rads is an easy progress after chemo, although I understand that your wife has already had some lymphedema issue.  At the end of the day dealing with the side effects of rads may be the lesser of two evils as opposed the risk of recurrence if you decide not to go that way.

Gai

netty46

Hi  DLTNHM  arbitrary?  sure I will get right on it . Lets see maybe I will also add my SS# and my address and also leave the front door open.  I have posted alot here its very easy read them and then you can see my history.  No need to get so critical. 

MNSusan

Wow, for what started out to be a really nice, helpful thread, it has some rather snarky responses.  In all my years on bco and these discussion boards, I've never seen this happen.  

Colt, I can feel your agony in making a decision.  This is what I know - there aren't any guarantees.  I think we all gather information, seek advice from our physicians, and do the best we can.  At some point, we just have to trust and let it go.  I am another stranger wishing you and your wife a long healthy and happy life!

dogsandjogs

I had a new primary in the other breast 28 years after the first cancer. All these years I would think about a recurrence; I never dreamt I would get a NEW cancer.

You just never know----

Gai

dogsandjogs

How very true you just never really know, do you! But no point worrying about it unless it happens

Take care

Gai

dogsandjogs

As my step-dad said:Worrying is like paying interest on a loan you haven't applied for.

Colt45

I've been told: "Don't borrow trouble"...

Gai

that is such a fabulous saying.  Love it  Gai

Gai

Hiw are you doing now Colt45?

And very true don't borrow trouble.

Gai

Colt45

@Gai:

I have a lot of stressors in my life right now. We're moving out of our house of 10 years... Only home we've had as a married couple and the only home my 2 girls know. Very emotional. There are things going on at my job right now that are very unsettling. The state is in the process of closing where I work and it's a messy process.



I have a lot of anxiety.



Just trying to keep moving forward.



We have been trying to sell for a while. School system is the primary factor. That and the neighborhood is changing. And of course, everything that comes with my wife being 9 months removed from a breast cancer diagnosis.



A lot going on.

Lily55

Good luck Colt and Mrs Colt.....If you trust in your intuition and don´t let fear get in the way you will be fine, its a lot easier said than done of course....

Claire_in_Seattle

Hi Gai,

Working in the field of market research, I think there are segments.  That is definable patterns as to how women move on.  Fear of dying does not keep me awake at night.  Having enough consulting work does.

Once I knew that I would most likely be just fine, I decided not to worry, and that focusing on making it through treatment and beyond was the best approach.  Remember that I am self-supporting and I like the fine things in life.  I was facing a life of rice and beans if I didn't keep it all moving along.

I made sure I did all the recommended treatment which I got through just fine.  Two more years of anastrazole and I will be done.

The upshot is that I was given my life back and I wasn't going to squander this time paralyzed in fear.  I am stronger and fitter than ever, and I have also taken my work to a new level professionally.  I think I am doing very important work with a nonprofit dedicated to supporting brain tumor patients.  One of my colleagues in that venture is a young man where they weren't able to remove all his brain tumor.  It will most likely grow back in a decade or so, but right now he is vibrant and active (as in climbing Mount Rainier). 

I think that being missing a couple of chunks of flesh, and being a bit more sensitive on that side (muscle soreness) is a small price to pay for being given decades of a full and wonderful life.  I also think that I need to be worried more about heart disease and diabetes than breast cancer.  Fortunately, exercise is the magic bullet for all three once done with active treatment.

So no, I don't worry unduly about it coming back.  It could, but then I could crash on the way to Portland on my bicycle this weekend.

All that said.....I would say that I do have a bit of concern, but this is a positive force.  It motivates me to keep moving, and to eat a reasonably healthy diet.  Gratitude motivates me to give back and to make a difference.  So a different balance than going into this experience.

And lots left to do. - Claire

wildrumara

One of things that I struggle with from time to time is the "what ifs"........or "coulda, woulda, shoulda".....and that only comes about when I spend too much time on this site, or run into women that I know who have had different treatment recommendations than I have with similar diagnosis........it doesn't happen very often, but sometimes doubt will rear its ugly head and I will find myself questioning everything all over again........ugh!

dogsandjogs

That's true with every decision we make.  The thing to remember is : We did what we thought was the right thing  at the time.

I try to remember that whenever I re-visit past decisions (usually at 3 A.M.)

SelenaWolf

At some point - and as more time passes - fear of recurrence just seems to fade into the background as living Life takes over.  It's hard to pinpoint when that occurs, just one day you realise that you haven't thought about breast cancer for awhile or you've developed a new ache and you think, "... just my damned arthritis acting up ..." rather than "... OMG ITS METS ..."  

dogsandjogs

That's exactly right Selena!

Colt45

@Lily55: Thank you.



I wake up with anxiety. I think that the in-my-face challenges that moving poses is exacerbating that... and the current climate at work contributes. It's odd, because I worry about my wife's BC... but get momentary windows of time when I feel more positive about her prognosis------and despite work drama and the real estate saga we have been enduring, if I could just somehow feel better about my wife's prognosis, then I'm ok... But the 2 lesser stressors (work, where to live) are causing me the most daily stress. I wonder how I'd be without them. It's hard to separate them. Life is just pounding me from all directions... but I would be okay as long as my family is all together. I'll deal with everything else that comes up.



I'm scared and I hate my fear... I'm not embarrassed by it----but I hate it because me living in fear does nothing good for my daughters or wife and living in fear is just "another way of dying", as someone said.



Then it hits me that recurrence is NOT inevitable. It's actually supposedly the less likely outcome for my wife.... and I try to 'run with that'. And I usually get to a place every day where I'm okay. Then I go to bed and wake up with anxiety again. And the process starts all over. But like I said, I think the other stressors are pushing me a lot, too.



My life 1 year ago was completely different.



I hope 1 year from now, it's back to being good. What is most upsetting to me is how any of this affects my girls, ages 9 and 4 (soon to be 5). This is their childhood. I've gotta keep us all moving forward. The pressure is just so intense right now.

ang7894

I feel like I am going to get cancer back,there is to much stress in my life and I cry alot my family is all tore apart and my one son is trying to put a wedge between my daughter and I. She just turned 18 today. My son is 30 years old.  I also feel like I am doomed to die young I was diagnosed at 43 years old I am 45 now I feel like most likely I will not live past 50. I have had this feeling since diagnoses.  My life has always been a glass empty kind of person my whole life. Twice this past month I feel like taking a bunch of pills and just end it all I really don't think any of my children would really care.  I hurt so bad of my family life and I am so tired of getting hurt by them.  Sorry to Vent I just feel like whats the point anymore.

sweetpickle

Ang- I am so sorry that you are having family troubles, I hooe they sort themselves out soon.

graceforme

ang7894, I'm sorry that you're experiencing such pain & that you feel hopeless. I pray that you are able to get through this. Is there anyone you can talk to?



Colt45, I pray that God gives you peace. I know what it feels like to wake up with anxiety.

netty46

Ang yes there is something that matters . YOU! Get some therapy . Someone to talk too. But remember your number one!

ang7894

My daughter was my whole life and my Step son says your 18 now you don't have to listen to your mom. My husband and I have not talked to him for a year. I will try to sum this up. When I was in treatment he moved in to take care of me Very nice and sweet his heart was in the right place at that time. However when he got here with in a month he recked his car, we think he was drinking or high or both. He hit a electrical pole, took out over 22 peoples electric.  My pills came up missing he was stealing my drugs when I was in heavy treatment. One morning he was to drive me to the hospital for blood work or something. He was doing 60 miles an hr. Going off the road etc. I told him slow down and are you high? we almost went in the ditch not once but twice. Anyway we had so many problems with him while he was here I told him he needed to go back home I no longer needed his help.  Now when I did that I hurt HIM when I said go home. And he told my husband that he wants to hurt me like I hurt him. And that of course is through my blood daughter. He calls and tells me he did not want his dad and me to get together or have a child he tells me I am A slut and that he did not want his dad and me to have any children etc.. Hello we have been married for 19 years...   My daughter is all of a sudden talking and listening to him. I don't know how to tell her he is only doing this to put more of a wedge in between us as mother & daughter because he is still hurting. I am just so tired of everything. I don't even know why I fought so hard to stay alive. I just wounder if I wound up in the hospital WHO would call or really care?