Is this the "New Normal?"

Hi Faerywings, it does take awhile to really "almost" forget about the experience.  I'm not there yet. When the mammos come up, it can be difficult.  I guess that gets better after awhile.  I ended up having a biopsy on the other breast as a result of the first follow-up mammogram.  It was, fortunately, benign.  My next yearly mammo is coming up in a month, and I'm trying to be matter of fact about it.  The odds are very high that nothing will be found.  I cope by thinking about how fortunate I am that things were caught when they were, that the situation could have been worse, and that my treatment (three lumpies and rads) was not too bad at all.  I'm around so many people whose situation was/is way worse. I also try to spend time with people and activities that give me pleasure, health-giving activities like dance and listening to musical performances. 

Well.  I had low-grade DCIS with a very low Grade 1 non-aggressive microinvasion in Nov., surgery in Dec., finished rads in March.  In April, I found a small lump under my other nipple, and did the usual procedure; mammo, ultrasound, and a very careful clinical exam by a BS.  Nothing was seen on the mammo or US, and the clinical exam felt the little lump, but it was not alarming.  I do see from being here that a cancerous lump can be missed on mammo and US, so I'm keeping track of it myself.  I was never alarmed, really because I've had a few breast lumps in my life like this which just turned out to be lumpy breast tissue, and that's what I expected with this. Of course, just because the others were nothing doesn't mean this is nothing, and now I'm at an increased risk.  Maybe I should be worried.  I think I just have BC overload, so am going with the idea that if no one else is worried, neither am I.  Which I know is probably silly (though it probably really is nothing), but I can't take anymore.  As far as the general feeling of being set adrift after BC treatment is over, I have had that.  I'm beginning to see that even though there is an overwhelming chance this BC is treated and gone, there is a small chance it isn't (as there is for ALL of us, even those with pure DCIS, in that THAT can come back, and when it does, it is IDC half of the time), and I just don't feel carefree in that way any more, and I don't think I ever will.  Where to "put" this, I don't know.  I have so many other issues to deal with in my life these last few years, it is just one of many; on the other hand it should be the biggest, as it could be about my very life.  I guess I just can't have so many life-altering possiblities (financial, etc.) going on in my mind all the time, so I've just let this go.  Though if it crops up again, it will be the big one.  My next big fight will be to have alternating mammos and MRIs, as is suggested by many, and the MRIs are not what my HMO is willing to do.  And now the liver MRI, which they think should be fine, but which I may put off forever, because, really, if I hadn't insisted on the breast MRI, they would never have seen the incidental, probably fine, liver finding and be wanting me to do another liver MRI just to be sure and I would be fine without ever having to go through THAT process (note they have spent $ on 5 liver imagings for something they think is almost certainly nothing, but won't give me follow-up breast MRIs for something I actually had).  So, basically, how do I cope with it?  Other than self-checking regularly, I just don't.  Enough is enough for me.

TB90 - I am so happy to see you back.  I really got why you were so upset in that last flurry, but you are SUCH a benefit here, to me, personally, and I am so pleased you have chosen to put that past BS behind you and rejoin us.  I'm not here as often, either, but I do come back.  So many wonderful women here who we need, and who need us.  Love you a lot.  Yes; I'm like you.  I'm always going to be affected.  I see from women who have been here longer than we have that we probably will feel better in time, but the fact that years 6-10 are big for recurrence (if one gets past the worst first 2 years) is just there.  Other cancers are "good" after 5 years, often, but not us.  I'm having to learn to live with the fact that I could be going along just fine, and BOOM!, there I could be again.  And how would that happen?  A pain, a blood test, what?  I don't even really know how women find their BC has spread, later.  It makes me scared, it makes me live more for today (which isn't great, as my today isn't wonderful), but I'm determined to still believe I have a long tomorrow, whether I need a little denial (not always a bad thing) to do that or not.  I just hate relaxing and then being surprised.  Am I supposed to tell a man I may meet that this could be in my future (there's a real incentive for already marriage-shy middle-aged men)?  Is it wrong if I don't?  Should I "push" the docs for more intricate tests (which they won't give; no tumor marker or other tests for me, they say, as I'm low-risk).  10% is considered my lowest risk, and that's 1 in 10!.  It's a HARD one.

Has anyone noticed that this feels like our own, much more real and personal, version of Facebook?  Please don't take that the wrong way, and it's nice to not talk BC on FB, but I was getting tired of FB anyway, and at least here we talk about something more important than whether to ask 300 "Friends" whether to get a Sheltie or a f*****g Labradoodle! xx

Hi, Faery. It has been 15 months for me but I still stress about every little thing that seems not right. I have scar tissue from surgery and IORT that feels like a large lump. I have them triple-check with every mammo and breast exam, and I know it is not cancer, but I still get freaky about it. My RO says it will "flatten out" over time, but that can't happen soon enough to suit me. I also have soreness in that area and my BS says with some women there will always be soreness.

The only advice I can offer is to have them double-check anything you are concerned about. I wish you well.

Faerywings - I am perimenopausal too, and for what it's worth, my periods have gotten MUCH better (lighter, less frequent, less cramping and less fibrocystic breast pain) since starting Tamoxifen.  I was >90% positive for ER and PR so felt it was important to at least give hormonal treatments a try.   You hear so much about the negative side effects, but I thought I would share that I have had some positive ones as well.  For me the only negative has been mild hot flashes that are more annoying than debilitating.

Fareywings, thanks for raising a thread that resonates  for me  and to those of you who have responded, the subtopics raised, also strike a cord.  I entered therapy three weeks after my first diep surgery.  I could almost walk upright upon the frist meeting with Ana, the clinical physiologist selected from a list of providers that my insurace company would cover.  Therapy helped greatly, especially EMDR, a process that uncovered and reduced the past anxiety that was connected to what I was holding me back from moving forward; fear and stress.  It all seemed to be going well until the third diep revision surgery, July 2013.  While I was in surgery, my husband was getting a lump in his neck checked by a ENT consulant.  When I woke, darling husband relayed that he now has throat cancer. 

Walking through the daily grind of husband's active treatment (7 weeks of driving him daily to and from, 4+feedings  via syringe in peg, monitoring meds and patches 24/7, keeping 14 year old son, dog and house going, plus the worst christmas I'd ever had), my left breast and anything connected to it, paled in comparison.  Reality beyond a jolt.   Fast forward to now, we both live the new normal as he is  in remission from the described hellacious active treatment.   It worked.  That was my lesson.  Advances in cancer treatment works for many (for now?) and we move on.  I can't say all fear has been resolved, yet uncertainty has become accepted.  I gave hormone treatment a try and with the % so low compared to the impact of my quality of life; I'm off it with my oncs blessings.

Time has also been a positive factor and I note that some of you were dx in 2012.  I been through 2 mammos with calcs in my right breast and they remain the healthy type and have not become something else.    It's  quite a journey, isn't it?

Percy4, do let us know the results and I for one, hope what they think is suspicious, is something that is treatable. It reads as complicated family issues for your reasoning of not wanting to tell anyone of what you are facing.   I read a few blogs of women who are stage IV (for a couple of years now) and what I've come to understand, is that the internal journey outweighs the external, although the physical issues are easier to relay to the reader.  Hang in there Percy4, and I for one would be scared, and as you have stated, chances of mets with a micro are SO rare, so I hope you keep that in the forefront as you wait for results. LB, x

I don't mean to offend anyone.  But, I have to say, if money is not important to you (about your children), you probably have some.  Just saying.

No offence taken Pecry4, yet my meaning regarding internal vs. external was about where serious, fatal illness takes us in our being/mind/soul/views of life and the external of what tx I'm having (and is it working) is easier to maintain online than the latter.  I understood clearly that you would do anything for your chlldren, including silence of your truth.   I wish you serene a weekend and if you want to talk or vent, I'm here listening.  Hi Fareywings, happy weekend to you too.

Hi mripp -  So sorry you're in the waiting period.  That's the worst!  It's great news about the SNB, though.  I had all your same feelings; please cry whenever the mood takes you.  It's so normal. I do hope you'll be able to get in at least a couple of camping weekends (if not long ones) while doing rads.  At first is best, in case you may have fatique toward the end, or uncomfortable skin toward the end (hope you have neither).  I used My Girls Cream ($35 online, you can Google it); start it a week before rads (no cream 4 hours before treatment; wash with a simple soap before).  My jar lasted the whole time, and I healed quickly and beautiful.  Also used pure aloe gel at the rads office immediately following each session, before driving home.  It'll be done before you know it. Have you asked the radiation oncologist about the 3-4 wk. protocol for rads?  It's commonly used for women who are under a certain size around the rib area and meet the criteria.  Studies show it is just as effective, and possible later cosmetic changes are no more likely than with the 5-6 wk. protocol.  Sending good thoughts for a good path report.  Let us know!

thanks for your encouraging words. I didnt hear my path report late Friday, so I called my BS nurse and she says probably Monday....waiting and waiting. I will ask OR about the 3-4 week protocal (good info percy4 ) and also order that cream. Txs! So do you know usually how long between Surgery and rad? I only assume my incisions would have to be healed first, like 2-3 weeks, but dont have any idea and didnt read that question anywhere??? anyone know avg time? Anxiously waiting results!

Hi mripp, I was treated at Memorial Sloan Kettering, and it was actually 10 weeks from the surgery until the radiation.  I had to wait 6 weeks to have the first consultation with the radiologist, and then an additional period of time until the mapping and actual radiation began.  They weren't concerned, in the least, with the wait, so I wasn't either.  It's also possible that they triage us, and maybe DCIS patients are not considered as urgent.  Of course, they have to schedule radiation of all kinds of cancer, and some of which is much, much more urgent.

I should add that it was seven months from the time of the core biopsy to the radiation for me, because the core biopsy only showed atypical ductal hyperplasia, and having had that diagnosis before, I took my sweet time arranging for the necessary excisional biopsy (about 7 weeks after the core biopsy).  Then I went for a second opinion after that surgery, and my next surgery was almost two months after that, and the final surgery was two weeks after that one.  So, lots of time passed. But, again, I don't think that there was huge risk involved, and I felt confident (as did the RO) that once they zapped me, they really substantially reduced the recurrence risk.  Best of luck to you.