Fear of re-occurence

OK, I'll let the censors go nuts here. WTF does what you may have heard mean? YOU ARE NOT A STATISTIC! Please see my response to an 11 year survivor Weesa about what I think about statistics. Look at how many of us are still here, and with crappy stats to start with.

It's all new to you, PLEASE ask questions and be your own advocate. We'll be here to help you along the way.

Love,

Sharon

Hi All,

I have been told I am at 'future risk from chest wall recurrence'. I am checking my mx scar everyday, looking for it. It's so tiring. I think it means (having seen it in black/white) that I will recur, Just the 'when' is unknown.

I am only just over a year out (if point of dx, was when surgery happened).

it is very hard to live this way.

I am very grateful to be able to be able to talk to ladies on here.

Momine,

Thanks for replying, yes that's what it says in my 'copy to patient' letter. Although it goes on to say 'clinically she is well. with no sign of....blah de blah'

I think I know why ( a bit of a late presentation,) but I (think) I have forgiven myself for that.

I am not seeing them now until March, as they have moved me from 3 months - 6 checks.

I am just trying to figure out how to live like this. Also have other health stuff going on too.

Friend had stage 3 c 14 years ago. Another had stage 3a 3 years ago. Both are alive and well. You can be too. My 3c friend had all 34 lymph nodes involved with it outside of them too...all removed. So go and enjoy your life and don't let cancer steal another moment!

Hi, wintersocks. My surmise is that you are at risk of chest wall recurrence because of the size of the tumor (as am I; see my dx in my sig line). Location might have something to do with it, too.

I talked with my oncologist about this, who wasn't very helpful about this specific question (how would we know? what are the symptoms?), but I did speak with my plastic surgeon (I had recon), who I see once a year. He told me that the likelihood of recurrence, with a good clean mastectomy, is just a few percent and with the radiation that I also had, drops it down to about 1%. I see you had radiation, too. So, nevertheless, the chest wall recurrence risk is there but it is very small. They probably have to mention it because it is not 0%.

However, with my stats, I'm not worried about a 1%-2% risk of local recurrence. I'm much more concerned about the ~ 40% chance of developing mets - according to the statistics. Who knows what will happen to any of us as individuals?

I am just a little over three years out from dx and have very slowly improving chronic pain from untreated pain throughout treatment. However, I can say that a bad day today is a better day than a bad day a year ago, and a bad day a year ago was better than a bad day the year before. The fear is there and for me I think it always will be. But each day I give it just a little less charge and I let myself think in frameworks of months, on an especially bold day in years, rather than in weeks or days or hours like we do earlier on.

Hang in there.

Wintersocks, I also had a huge tumor, although I had pre-surgery chemo to shrink it. I saw a video somewhere done by a breast surgeon, and he emphasized that you should do "breast" self exams even after BMX, which makes sense. If I find anything, I bring it to the doc's attention at the next check.

About 9 months ago, I found several tiny lumps and one rather biggish one. I freaked. Doc said we would watch it for 3 months. I agreed, then realized that I couldn't deal with checking and wondering for months like that, so I asked for an ultrasound. I am glad I did, it turned out to be fat necrosis and an enlarged lymph node, but not cancer. The doc who did the ultrasound was incredibly sweet and spent 45 minutes checking every millimeter of my chest, although she had a waiting room full of patients. She must have appreciated how worrying it was for me.

Hi there,

Wintersocks, I see you are in the UK. I'm in Suffolk. I'm wondering if you are nearby to me?

Momine, thank you so much for your advice. I hear what you are saying and appreciate all the research you have done and shared with us.

I have opted to stay "semi-informed" because I am such a worrier.

I try to remain positive but when I felt lumps in my breast I had an ultrasound and the doctor was very patient and reassuring and pointed out that the lumps were only part of the tissue used in reconstruction.

I was having dizziness, clumsiness and memory problems and I had a brain MRI - negative - I was reassured that it was probably the medication I'm on for neuropathy.

I stopped taking tamoxifen about a month ago - I was feeling so "wrecked" all the time - I finally went to see my specialist this week and she said I "have to take something". I had my hormone levels tested - am waiting for the results. If I'm showing as post-menopausal then I can take Femara (or similar). Otherwise, I have to go back on the tamoxifen. Oh yeah, I might have a shot in my ovaries to shut them down - whatever that is - I haven't googled that one yet.

In the meantime, I'm having a lot of pain in my neck - my specialist offered me an x-ray but I said I would wait another week or so to see if it improved. I'm scared of bone mets even though I know I could live a long time with them. I see what bone mets has done to my cousin's wife and I'm not sure I want to go through that.

I just don't know for sure but I think that this worrying is something like fear of dying or maybe it's coming to terms and accepting the inevitable.

I know one thing for sure, my relationship with my gorgeous man is going downhill because I'm so self-obsessed and self destructive right now.

Anyway, if any of you relate to me - please have your say - even if it's harsh.

So glad to have this thread. I am recently dx stage II with pos nodes. I've only had one chemo treatment but I've already planned my funeral. I just feel it's only a matter of time before I get mets. I know the odds are that I won't with treatment but my cancer has certain characteristics that indicate a poorer prognosis like me getting the cancer while on tamoxifen and it being high grade.

I've been on these boards for several years and have seen people with early stage cancers recurr and die. On the other hand I've seen late stage people do quite well. In my heart I know it's a crap shoot either way; there really doesn't seem to be any rhyme or reason behind who gets mets and who doesn't. There are only statistics, percentages, etc. that show one's "chances" of going to stage iv and let's face it that's what we're all afraid of.

My Onc's tell me that there is a good chance that this can be cured through treatment and I try to tell myself that, but these nagging feelings that it's only a matter of time just won't go away. I will be finished with chemo in Feb. then on to AI's (which I pray will work this time) and I truly want to put this behind me and move on but I'm just afraid I can't. I am taking early retirement with absolutely no plans because I want to "enjoy life" while I can, when the fact is I'll probably be sitting at home worrying myself to death. Don't get me wrong I'm not a basket case but I just don't feel the same about the future and I can no longer see things in the long term. I'm glad to know that there are people who are sharing their feelings on this subject (although I'm sad they feel this way -- it's really a drag), and I appreciate you guys letting me vent. It's good to know though, that it will get better with time; unfortunately for me, I'm still at the very beginning.

2timer - You said "I can no longer see things in the long term." This is so how I feel. I have not been able to explain it in words unitl I saw your post. My DH keeps re assuring me that even though stage III I still have a low grade and so most likely will never progress. Now seeing your were stage 0 and grade 1 is really a wakeup call for me. Especially so, because I've stopped taking the hormonals for the past year because I just can't handle the side effects. Definitely will be talking to my onc now and driving him crazy even more now.

I finished treatments in August. I was ramping up to be fit for a singing competition November 5, in Hawaii with my Sweet Adelines buddies (We won!!!), and then my plan was to start my graduated return to work. I was feeling great!

All is going according to plan, but my preoccupation with metastasis currently seems to be getting greater and greater. Who can we say this to except here? I mentioned it to my DH last night, but he tells me I must not dwell on it, but just be hopeful and positive! I don't want to bang on about it too much to him, because why upset him, if he's happy thinking everything's fine.

But how can one choose one's thoughts? Oh yes I have been given some strategies, but nothing is working well right now. I have muscle twitches in my right thigh for 2 weeks now. Is it time to mention them to somebody? Will they tell me it is just stress, or will it start a round of scary investigations? I have a CT lung booked Dec 13, to follow up on an "indeterminate" lung nodule. Hopefully it will show no change, ....... but what if ....... ?

Hi Spunk girl, I totally agree with you, we must enjoy every day as if it is the last, but I find it is not so easy. I sometimes find myself worrying about next year, what will happen to my work? will I be able to afford my Apt considering I will be now working part time? Things I know I should not think about and deal with it at the time it comes. I recently started Yoga Classes cuz I hear so many ladies here love it, supposed to help me with the mental stress and I honestly hope it does. The C center is a bit far from me so I have to drive there and I am trying to keep positive but It is just not been easy. I have my surgery soon and that is giving me lots of stress, not knowing how will it all turn out at the end. Anyway thanks for reminding me I need to let go of planning the future and live more the present

eval - It doesn't seem to me that your radiologist should have told you that your chance of recurrence is good. My diagnosis is very similar to yours except that I don't know how many nodes were involved because I had chemo before surgery (meaning that they knew that there was significant node involvement). I'm a year and a half from diagnosis & just saw my onc. & he says I'm doing great. I think sometimes they say scary things because they know the treatments are hard & they want you to stick with them, because that gives you better odds. That doesn't mean that I'm not scared & worried.

I think I have finally come to the realization that this fear & maybe depression needs treatment too - and it's a treatment that my docs can't provide for me (yes there's anti-anxiety meds but they don't seem to help that much). And I guess it's in part why I'm on this board. I don't want to discuss this with my family or friends - because they don't get it. They see me looking healthy & "better", like the cancer is done now - but I still have a lot of effects from the treatment and that lingering fear that the cancer isn't done.

I'm not a religious person, but I have begun to start each day with the serenity prayer :

God, grant me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference.

This is step one in my treatment plan for the emotional part of cancer. So far it's helping. I'll let you know when I figure out step two of my treatment plan. : ) In the meantime, many, many hugs.