How does one find out their BC has spread?

percy4 · May 2014

This may seem like a simplistic question, but I'd really like to hear some answers and experiences. I had a low Stage 1 microinvasion, clean but narrow margins, lumpectomy and rads. Chemo not offered or needed for a tumor that size, and hormonal therapy not pushed because of low recurrence chance (up to me; I choose exercise, shown to prevent recurrence by 30%, instead). Maybe 10% recurrence chance, but that's still one in 10. Maybe more. Who knows how long it was there before it was removed (previous mammo was 2 years earlier)? Too small for an Oncotype test, Ki69 (?) test not done as it was deemed non-aggressive from other indications. No family history, but that's inconclusive to me, as there is only one older female relative to go by, and we are Jewish, which has more family-related BC genes(they won't do genetic testing; probably it's not genetic). So my chance of distant recurrence is low, but it happens. My BS and MO both told me I did not need a sentinal node biopsy with a microinvasion. Since then, I've learned that SNB is still standard even with a micro, though it's very rare for it to be positive. It does happen, however, but that ship has sailed, as I've since had rads over the area and it would no longer be an accurate test. We can presume that it's very likely there was no nodal involvement. My question is this; how do you know? With no PET scans, no tumor marker blood tests available to me (they won't do them, even occasionally) how would I know if I had a distant recurrence? A pain (THAT would seem like finding out late), an irregular routine blood test (unlikely anything BC-related would show there), or what? How did you Stage IV ladies who started out low-stage discover your cancer had spread, and did it make a difference to find out later rather than sooner, or vice-versa? Is there anything I should be doing, to check, besides the above mentioned tests I can't get, or any one of those that I should really push for, a specific tumor marker that's really good at detecting spread? Bone calcium tests detect anything? Chest X-Ray really matter, or is it late by the time something is seen there (they won't do a lung CT)? Finally; did anyone out there have a Stage 1 end up a Stage IVwhen theStage 1 was a MICROinvasion (meaning 1 mm or smaller)? No; they will not give me breast MRIs alternating with mammos, as is recommended elsewhere a lot, just mammos for follow-up, but that would be only the breast, anyway. Thank you for taking the time. I really appreciate it.

farmerlucy · May 2014

Hi Percy - Whatever our dx is it seems we always have questions. Often answers to those questions lead to more questions. My onc said I'd know before she does if mets occur. Knowing earlier does not increase survival time, so I'd rather not know. I'm gonna assume I'm cured until something proves me wrong. I hope it doesn't prove me wrong, but I have accepted that I have to learn to live with the uncertainly. For me acceptance took the better part of two years. Hang in there.

percy4 · May 2014

Thanks, Lucy. My dear friend, Ted, told me the sign of an intelligent mind is one that can live with uncertainty. True, I suppose. Just wonder why they don't give all women diagnosed with BC one PET scan to see where they are. Of course, the answer is $. Life is uncertain enough (by far) for me these last few years, and, oh well, I guess I'll just have to deal. Still; I'd like to hear how other very low-Stage women discovered their distant recurrences. xx

exbrnxgrl · May 2014

Percy,

You find out if you have mets when and if you have symptoms. As Lucy stated, early detection does not increase survival time, statistically speaking. This sounds counterintuitive but thus far, is true. I am one of the rare folks whose single bone met was discovered by accident (unrelated PET scan). No pain, no symptoms. Your risk of recurrence sounds very low, though difficult , try not to let worry about mets steal too much of your life.

Blessings2011 · May 2014

percy4 - I am Stage 1, with multifocal DCIS, and multifocal IDC with two tumors - one at 1.5 mm, and the other at 0.5mm. Small, early, and I still chose BMX with recon due to my family history. (No chemo, no rads, just a year on Arimidex, and now almost a year on Femara.)

But as for recurrence, I do see my MO every six months, and she does an extensive physical exam, which, of course, I could do myself. I just know what my rib cage feels like, what my implants feel like, and what my armpits feel like. If there are any unusual lumps or bumps we'll take it from there.

But here is what I've learned in the 2-1/2 years since dx - I am in my 60's. I had aches and pains before BC, and I'm going to have them afterwards.

When this happens, I am going to assume that anything unusual is due to things like arthritis or other more commonly occurring things rather than mets.

Do Stage 1 women go on to become Stage IV? Yes. That's the crappy reality. Is there any one thing that could have prevented that? No. That's the crap shoot part. Does this happen often? No.

There is a wonderful phrase I heard here when I joined: Don't go there til you get there. In other words, Don't throw away your todays by worrying about what might happen tomorrow. It might NOT, and you will have wasted your days instead of enjoying life.

SpecialK · May 2014

percy - have you used any of the recurrence calculators? It might help ease your mind if you put in your stats to see what your recurrence chances are based on your specific treatment choices. The pictogram display is the easiest to see on the cancermath site, and the predict site is in mm, not cm, so put the size in accordingly. Here are the links:

http://www.lifemath.net/cancer/breastcancer/therapy/

http://www.predict.nhs.uk/predict.html

The ASCO guidelines for post-treatment surveillance for those of us who have had higher stage cancer with more aggressive treatment do not favor scanning and blood tests going toward for monitoring. I know this can be frustrating and anxiety provoking - it is a feeling shared by many others. The reason for this is as exbrnxgrl states, there is no improvement in survival.

http://www.cancer.net/research-and-advocacy/asco-care-and-treatment-recommendations-patients/follow-care-breast-cancer

Sunshineinky · May 2014

Blessings I think I needed to see your statement tonight! "Don't go there, till you get there"

pajim · May 2014

Sunshineinky, the most likely recurrence for someone like you is a local one -- i.e. in the breast (happened to my mom, 16 years later). You have mammograms to look for that. If that happens, they do a mastectomy and give you hormone therapy (just like my mom).

Mets are found with symptoms. Bone mets usually when something breaks (back, rib, etc.) or with bone pain. Brain mets with confusion and headaches and the like. Lung by shortness of breath, you get the picture.

And really, particularly with ER+ cancer, early detection doesn't help the length survival. Only makes people worry a lot.

Don't cross that bridge unless you have to. If you spend all your time worrying and nothing happens, you'll have worried for nothing. And if you spend all your time worrying and something does happen, will it make you feel better?

Sunshineinky · May 2014

I appreciate your response Pajim! You're right and I'm hoping as time goes forward that those thoughts will ease away. I'm guessing it's normal for us to worry. I'm overweight by 60lbs and all I can think about is the estrogen hiding in my fat cells just waiting for the chance to grab onto a major organ or bone.

It's crazy but then again everything about this journey is crazy.

momand2kids · May 2014

I think another issue with PET scans is that lots of things could light up and then you could spend all sorts of time hunting down things that might not even matter. My onc did not do a PET at the beginning and I have just declined one from the pulmonologist looking at a 6mm nodule on my lung... would rather see if it grows in a couple of months before we do that... and I don't want any more radiation----

I think the concern about recurrence fades over time-- I don't worry about it too much after 5 years-- although when I have other issues (like this lung thing) I start to worry-- but I realize that the odds are in my favor--- so I let it go. Definitely I am not going there before I have to.. trying to enjoy the present---

wildrumara · May 2014

Hi there! Briefly want to share my story. Diagnosed stage 2a in 2011, had oncotype first which was 25...which put me at 16% chance of having a recurrence. Decided to do chemo becuz I was young at 42. Did 6 cycles of T/C then had BMX where I had two pos sentinel nodes (barely) with reconstruction and onto tamoxifen. Fast forward April 2014, I decided to see a urologist becuz I had a nagging UTI. She decided I should have a CT scan to look for bladder or kidney stones. No stones were found, but a lesion was seen on my liver. And yes, that lesion was biopsied and positive for mets. The oncologist I saw for a second opinion said there were no red flags in my case, nothing that stood out screaming recurrence....I had a 16% chance of having a recurrence....someone has to be that 16 percent...I guess it was me. I have no other mets in my body...just the two small spots in my liver. Because of this, and my youngish age and the fact that I'm very healthy, I was treated aggressively with surgery...::anyway, I know people say finding mets early doesn't give someone an advantage...:sure hoping that's not the case with me. These lesions were found incidentally, before I had symptoms, before my liver was compromised....anyway, I'm hoping this is my little miracle...

GrammyR · May 2014

Percy4- Not to worry too much but I think I would be going for biopsy of sentinal node. I was told before surgery 2006 not likely I nodes at all but whalla- yep in one SN. My ER pos came back last year after 7 years. Originally I had a non painful lump then last year shoulder ad arm pain on same side . Came back pos under collar bone. W/your Jewish roots -yes there is more hereditary cancers.

Hugs coming out to you.

Hortense · May 2014

wildrumara - (((Hugs))) to you. I will be hoping for your miracle.

GrammyR · June 2014

Wilderumara- Are they considering a new chemo drug for you such as Zeloda or there is another oral one given along w/hormone blocker that is pretty effective. With liver involement now you likely will need some additional treatment. Hugs coming your way.

edwards750 · June 2014

Percy - boy can I relate to your anxiety about the anxiety about a possible recurrence. Totally agree about not wasting time worrying but the fact is that's what I do- worry and not just about BC. I think it's a control thing with me. I don't handle being blindsided very well but as all these ladies have said we can't predict or even stop what might happen and that's very hard to accept. I didn't have any overt symptoms of BC. No pain or nipple issues, etc so I was surprised when the nurse called me 2 weeks after my mammogram to come in for another mammogram because one breast was bigger than the other. Game over. Never happened before so I just knew.

I have come to terms with having the dreaded C word and still panic b4 a mammogram but I am 3 1/2 years out so maybe a little less paranoid. We have to give ourselves permission to not dwell on our DX and I don't know - live our lives maybe. When I had my latest mammogram last month there were 2 ladies in the waiting room with me. I am pacing, of course, but they are seated and so calm. One was 5 years out and the other one 8 years but BC had shown up in her other breast. I asked them how they could be so calm and they both said whatever happens they would deal with it. How do they do that I asked...lots of practice.

I am encouraged that I have an Oncotype score of 11, a BS who thinks I have a wimpy and non-aggressive cancer, and an ONC who is also very optimistic. Of course there are no guarantees but I and you should too, focus on whats promising and not what might happen.

Diane

momand2kids · June 2014

Percy

I think the anxiety does lower over time-- for me, I felt really ok during treatment-felt as though I was being "watched". then had 2 visits, a mammogram and MRI every year, a regular pcp exam every year, gyn every year, dermatologist 2x a year-- there are lots of people checking me out.

And when I got sick this year--cold that would not quit- my pcp had xrays and a lung ct scan done... lo and behold, nodule on my lung ( pulmonolgist pretty sure it is nothing) and nodule on my thyroid (incredibly common, 95% likely to be benign). So, a couple of things about this. I am pretty sure if I had not had bc, I would not have had the lung scan and these things would never have been picked up (they are so small--lung nodule is 6mm)--the chest xray was clear and that would have been the end of it.

We are followed more closely because of the bc. My onc just released me to 1x per year, MRI every other year, mammo every year- going off the meds. No blood tests (she has never done them)..

So this recent experience of hunting these things down has been stressful and I wrapped my mind around having cancer again. And the truth is, if I do (thyroid) I am, like someone said above, equipped to handle it-- I don't want to, but I will.

Finally, I am a true believer that your body tells you something is up. before bc, I was for months tired and draggy, but not sick--- it took my a while to go to dr. but I KNEW something was up and the minute she found the lump, I just KNEW.

With these current things, I don't have that feeling--- there are so many people with nodules it is just crazy-- not as many people with lumps in their breast....

I realize everyone does not have symptoms, but I do think being very familiar with your own body and its general aches and pains and how you are feeling is the best approach. there is every reason to believe that you will be around for a long time and never see cancer again. That is the approach I am taking until there is evidence to the contrary.

Come back here often-- I think we can all help each other, no matter where are in this experience

Sunshineinky · June 2014

Momand2... Thank you for that post. I truly believe I needed to read it today.

I'm not sure when the newly diagnosed fear goes away but I find myself picking apart every single ache and pain and wondering if it's spread.

I'm currently battling my right arm which is the same side as my BC. I injured it a month before my diagnosis X-ray was clear so I've lived with the pain. I have an appointment Wednesday to see my pcp. I'm hoping he will order and MRI so we can get to the bottom of it. I'm sure you can imagine where my newly diagnosed mind has gone!

Anyhow thank you for the post.

How does one find out their BC has spread?

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