I will not put my head in the sand

suebak

Being diagnosed with stage 1, gr 2 IDC, I feel as if my team of drs are very confident. I too, was feeling very confident.  Just this morning, I stumbled onto a thread call "how old were you when diagnosed". It is very scary how many woman started out with similar diagnoses, then just progressed right up the chart.  I must say it is very frustrating for me to think I must be looking over my shoulder for the rest of my life, but it seems this will be case.  I was just looking for some advice, as to what I should be looking for, what tests I should be having in the future, etc.  I have noticed that many woman found their own progression, by insisting on having scans,test, etc. I will not put my head in the sand and just think after rads I am cancer free and it is all behind me. 

Anonymous

The best thing you can do for yourself is good followup testing.  You will get a lot of push back on this.  Lie if you have to.  Minimum you need at least a PET Scan every year and tumor markers every 6 - 12 months. 

The arguments you will get is that this makes patients nervous and not "able to move on" with their lives.  The other argument is that the best diagnosis come from women themselves - just report anything suspicious.  There are many stories on these boards including mine regarding what it takes to get a doctor to listen to you and pay attention to your symptoms when you do report them.

I could go into detail and examples of how advanced you can be before you ever feel it or notice it yourself but I won't.  I will leave you with two thoughts.  The first is that there's one thing worse than Stage IV and that is late Stage IV (really to late to do much of anything).

The second is lie, beg, borrow, steal, do whatever you need to do to get that frequent followup care.  If that means saying you have symptoms that you don't have - do it.

barbe1958

You are ER+ like me. Our cancer grows slower, so we have to be very vigilant AFTER the 5-year marker that makes others feel better about. I have done was nurse-ann has said and complained about a couple things every year to make sure I get at least a bone scan. I've had a brain MRI or CT (?) and ultrasounds on suspicious lumps and bumps. I demand blood work even when I had to pay for it (CA-125) but I am always aware. I am in the middle of getting blood-work re-done as there WAS something suspicious!

We have to be our own advocates and who would you work harder for than yourself????

The docs say they wait until there is a symptom to check for progression - so give them one!

changes

Hi,

I agree about not putting your head in the sand and maintaining some degree of vigilance. But also don't forget that the stage I women who have never had a recurrence are likely not posting here anymore, so what you see are the people who had a bad outcome. That can leave you with a skewed perception of how likely your cancer is to progress. I wish I could tell you I have found the balance between being appropriately vigilant, but also moving forward, but I'm really still struggling with that.

Karen

barbe1958

Karen, we know the odds, but we've already beat those odds by getting cancer, so our vigilance is a reality. I wasn't stunned to get cancer in the first place, as I'm over 50 and a woman. But, I don't want to be blind-sided by a recurrence. That's all. Like, I'm not going to let a nagging cough go on for weeks until cancer has eaten half my lung.....

As stage I and II we are treated less aggressively than stage III so we have a better chance of something getting through the cracks. I wasn't even given chemo (ER+ so it's not effective) or rads (right over my heart) so I had a double mast. But I did have ITCs (isolated tumour cells) AND micromets on my pathology. They just couldn't treat them.

suebak

Thank you for that piece of advice.  I have not had a pet-scan or bone scan.  When I asked my onco about a pet-scan, he said he didn't think it was necessary. I scheduled an appt to see my gyn, I haven't been there in 2 years. Rad onc said I should become very friendly with gyn, especially while taking tamox.   When I arrived, my reg gyn was not there.  I saw a nurse prac, that was possibly in her late 70's. After telling her I was currently being treated for breast cancer, she asked me if I have my yearly mamograms. She typed on the computer for a few minutes, then again ask when I had my last mamo, I then said "I HAVE BREAST CANCER AS WE SPEAK".  She replied, "So you are having your yearly mamo."  Felt like I was talking to my senile grandmother.  I am going to take your advice and find a way to get a pet-scan done, with the insurance company paying for it.  I think that is the biggest issue here, the insurance companies dictate which tests you can and can not have.  It just boggles my mind.  Thanks again ladies.  Hope you having a wonderful day.

Anonymous

I would add a couple of things to my post and those of the others.  Invent symptoms (bone pain - blood in stools, whatever).  Then after your annual testing - compartmentalize.  Live in the moment, enjoy life, and tune it all out once you get the annual test until the next time for testing.  Truly live in the moment. 

208sandy

I agree, lie if you have to anything to get proper (not just mamo screening) and then relax after the tests and get on with living - I have recently been told I have "dense breasts" that has led to no more mamos and US instead, also have complete bloodwork every six months, so far so good, my PCP is in cahoots with me so if I want anything I pretty much get it, also my PCP is huge on getting echo cardiagrams every year just to make sure nothing pops up there because of past treatment, also every six months, CT of my abdomen and pelvis.  It might sound easy to say "don't stress" and I must say that the first year I took Ativan once in a while but now I only seem to need it during testing week and even then not every day - I just keep busy and when really stressed I find reading helps - I've used it for years as a tranquillizer.

Good luck, Sandy

barbe1958

I am lucky that I don't stress around testing. That is actually when I feel better that I am being checked!! I try to kind of make all my testing occur only once a year so I know that I can relax and live the rest of the time. It's possible. Especially knowing that my cancer grows slowly.....that helps. Of course, a new primary could always pop up.....

elimar86861

I think I have a more moderate response than what has been given so far.  I do think of myself as "cancer-free" and live my daily life like it IS all behind me, but I don't think my head will ever be in the sand.  It wasn't there in the first place.  I went for annual screenings, did BSE.  Now, I faithfully go to all the follow-ups, with not too much anxiety, and if I get the all-clear I try to go back to not worrying.   I feel I can only do so much anyway.

My MO doesn't do tumor markers, just regular blood work (CBC + chem panel.)  I have never had a PET scan.  I have had one bone scan, after some rib/back pain symptoms (probably from rads!)   One thing I can agree on 100% is to report anything suspicious.  We can't ignore aches and pains like we used to.

barbe1958

My head was never in the sand either, that's why I wasn't surprised when I was diagnosed. To me it was always a matter of when....

firebird

I think there are probably as many opinions on the whole testing/followup issue as there are oncologists. They seem to be all over the map on that question and IMHO it's pretty much a crapshoot as to what any given onc's preference is. So I have just gone with whatever I have felt most comfortable with after doing all the research that I can.



For example,you'll hear Oncologist A say that she does tumor markers at every 4- or 6-month checkup but doesn't do any scans unless there is any reason to suspect a recurrence or mets. Then you'll hear Onc B say that he doesn't bother with tumor markers because that test is notoriously unreliable. While Onc C wants tumor markers AND a yearly scan, either MRI or PET of whatever. Honestly it sounds like a Chinese restaurant menu: Pick one from column A, one from column B, etc etc!



I know a gal who had the exact same type of BC as mine, same stage, same lack of lymph node involvement. We used different oncologists entirely. Her onc never did tumor markers either during or after her year of treatment, but wanted a PET scan immediately after the treatment year was done; that's what that onc does as standard procedure. On the other hand, my onc did tumor markers every 3 months the first year, now every 4 months that I'm in year 2, and I am assuming it will eventually be every 6 months; saw no reason for a PET scan but I told her I wanted one before I got my port out, just to make sure there wasn't any CURRENT reason to keep it. I asked about a brain MRI but was told that isn't done unless something were to show up on the PET. I pointed out that a PET isn't the best tool in the box, so to speak, to look at the brain because of all the background activity but she still feels "no reason/no brain MRI". Oh well. If I really want one at any point I'll just invent some new chronic headaches, LOL.



All kidding aside, my onc prefers not to expose her patients to radiation unless there's a good reason. I tend to agree, but wanted that PET just for my own peace of mind.



Ironically, my onc does tumor markers as standard screening BUT also explained to me that a high level does NOT necessarily mean there is any cancer, and that a low or normal level does NOT necessarily mean that the patient has no tumor(s). I then asked her "So in that case why should I keep spending $140 every few months for this blood test?" Her answer was that it's not considered to be a solidly reliable or particularly sensitive test but it's pretty much the only one available until something more accurate comes along. Hey, at least she was honest about it.



The new CTC (circulating tumor cell) test is much more expensive than the CA 27.29 tumor marker but that has its own set of criticisms, namely that if there don't just happen to be any cells in the particular vial that they draw, it will come back completely negative simply because it wasn't a representative sample. In its favor is that it is much more sensitive than the CA 27.29 and seems to have a much lower rate of false positive and false negatives in studies. But the trick is to get a sample that doesn't happen to not contain the nasties when they are present in the patient, and there's of course no way to be sure of that. And the test is so new that it's not in wide use so I suspect that many insurance companies would balk at paying for it.

MRDRN

This is a good question....the issue of follow up.

After my Bi Mx I was told no more mammo's or mri's! Terrific! 

My ONE appt with an Onc, I was told...no need to come back!  Then when I saw a pain DOC (my insurance doesn't require a refferal)  recently (referred myself) she said she was surprised he did not want to do any follow up...I was stage 1 (the pain doc was stage 0 and goes back every 3 months!)  She told me to absolutely go back.  He had said "we don't go looking for problems" but since I had already done a baseline BRAIN MRI for headaches, numbness in finger, I now HAVE to get a follow up every year to watch a small meningioma. Am I glad I had the Brain MRI in the first place? Absolutely. The question is weather one has insurance or not.  It is a sad reality.  Insurance companies, I think are more into PREVENTION.  Since my cancer was picked up earlier, it will save them money, right?   I would be careful with "making up symptoms" but I def plan to ask for a PET scan in Aug when I see my Onc.    As I speak, I have an ice pack on my foot that has pain again, and would love to know why....arthritic flare ups possibly?  but I can't believe I have to live with this pain the rest of my life...tough to "get old" when you just turned 50...perhaps it will be bone mets dx in the future. 

justjudie

Hi suebak,



I had to laugh at your descirption of the nurse practitioner at you gyn offc!! lol, Under the circumstances I think you should only be seen by the gynecologist just because you DO have breast cancer. Especially with that particular nurse practitioner! When I go to see a doctor I just don't like getting shuttled off to some other lesser professional. I went there for a doctor, know what I mean? Maybe I am too fussy. I know some docs are very busy. But if they are that busy I think I'd prefer to go elsewhere. But thats just me. Maybe you got to see the doctor too?



Re: necessary checknups etc. I was too complacent. My onc did continue to see me every 6 months and did a tumor marker test. I assumed that was good enough as he did not suggest anything else like scans etc. When I hit 5 years I really did think I had beaten it. I knew it COULD still come back, but I really did not think it would. Well, I got to nine and a half years and WHAM!! It was back in my bones and my liver. I wonder if I'd been having a scan even once every couple of years if it migjht have been found before it was in my liver. But who knows? But it could not hurt to request a scan maybe once a year or even every two years.



Judie

Foxlairfrm

I'm with nurse-ann. Get a scan yearly. Like Judy I thought I had beaten it. 14 yrs went by. No need to see my onc any more after 10 yrs. GP did my yearly tumor marker tests which came back great every year. They are totally unreliable. Even after they knew I had bone mets, the tumor marker test was showing only slightly elevated! I had reported hip pain and chest pain to doc a yr prior to re-dx. Had xrays and they showed bursitis/arthritis. The radiologist missed a lesion! If I had only insisted on scans yearly I may have caught this before so many bones became involved. My onc has since retired but we remain friends and he told me - lie if you have to but get yearly scans. Insurance needs a reason to do it after you are 5 yrs out. If I'd only known then.

I don't think you have to obcess about a recurrence. I think you live life and just have a really good yearly check up, then move on. Yes, I would get anxious as the yearly tests approached, but who wouldn't? Then go back to your normal life.

Oh, get a copy of all your stuff. Bloodwork, xrays, meds, dr appts. They tend to loose things and my records were extremely helpful with this re-dx. My old records had somehow disappeared. I just have a big cardboard file box and keep all records in it. It's stuffed in a closet so it isn't a constant reminder.

Deborah

Foxy

MRDRN

Justjudie, sorry it came back but please don't put ALL NP's in a box.  Some really are GREAT at symptom management and sometimes they are human and say something that doesn't jive with a particular patient.  The truth is, maybe we focus on this stuff too much sometimes.  I know I do, and that is my coping right now.  I hope as time goes by, that I can convince myself to get on more with living and trust that my health care team is making the proper care plan.  Hope you take this the right way and sorry your NP did not meet your needs.  With the healthcare crisis studies show that the quality of care is really being helped by the service of dedicated NP's and PA's....thank god we have them!   The cost doc's charge sometimes, along with unecessary scan's drives up cost.  It is funny but my NP ordered scans alot easier than Doc's....just sayin

Foxy yes I agree about getting copies of everything and keeping a file  .   The closet is a GREAT idea too )   have a great day all

Foxlairfrm

I agree that there are some great NP's and PA's out there. One of my closets friends is one of them. However- I would rather have a scan that showed nothing than risk not having one and end up looking at the end of my life at 51.

I think yearly scans should be part of a breast cancer patient's follow ups just like women have mammograms. It's painless, quick and an invaluable tool for diagnostics.

Foxy

Claire_in_Seattle

Hi Sue.....

Just seeing this so responding.  First of all, and I know I will be slammed for saying this, I am taking the position I am cured, but have to be monitored just in case.  So oncology visits every six months to the five year point, and then annually for the next 10 years.

As I show no other symptoms, nothing further at this point.  So no blood work and no scans.  Firefly talked about the reasons for this.  Just not needed unless something symptomatic turns up.  I am fine with this, but I do know women who are scanned nine ways to Sunday.

Also, I want to remind you that although most of us think about breast cancer, we also need to pay attention to all the other good stuff out there.  So diet and exercise to forestall fun stuff like heart disease and diabetes.

The big one is a yearly mammogram, and these are so much better with the switch-over to digital.

Anyway, good luck with treatment. Right now, your focus needs to get through that and end up better than ever on the other end. I think once you get there, you will feel ever so much better about everything else.

You will be just fine. - Claire

barbe1958

I've started to use the word remission. What ever happened to that word? It used to mean that for now, I'm cancer free, but it could come back. An easy explanation and most people understand it.

Anonymous

There is a difference of opinion on the issue of followup  Just to add, my doctors at Dana Farber Cancer Insitute aggree with Claire, FOR WOMEN WITH A SIMILAR diagnosis, which I have.  I'm on an AI, and now being seen, phycial exam, every six months.  No blood work, no tumor markers.  I've had a BLM, so no mammograms, just physical exam every 6 months.  No symptoms, so no further treatment than the AI I'm taking.

Hope all find the level of follow up they need, and feel best having.

Foxlairfrm

Barb, I agree with you. I was in remission and that was the actual term they used. Everyone has their own way of dealing with this terrible disease. Whatever makes YOU feel more comfortable - do it.

For me, I was living life! Feeling better than I had in years. Going for my regular follow ups. Unfortunately it is the silent killer and I had NO symptoms to report, no odd feelings happening. I was in better physical shape than I had been in years from riding horses daily. Other than the arthritis/bursitis in my hips and a torn muscle in my chest from unloading 200 bales of hay at 50 yrs old... Lol. I was great! IF I had had scans yearly or even every 2 yrs, they would have caught it earlier. It had been festering for a while. Silently. Now it's in so many bones. They wanted to pin both my legs as a precaution. Who knew! Not me! Until my arm literally broke in half. That is how we found out.

I suppose if scans and tests put so much stress on you perhaps it's better not to have them. I sure wish I had! Too late now. I'm optimistic that I'll be here for many years but the statistics don't really support that. I've always been one to beat statistics, I'm going to keep it up!

Foxy

barbe1958

I'm lucky. I don't get stressed with testing. It's when I think somethings wrong and they WON'T test that I get stressed. Because of a lot of weird things that I've had, my doc tends to go with my gut. He's great.

You already beat statistics by getting cancer, and then again by getting mets....I like to say 'Raise the bar! I can jump higher than THAT!!"

Foxlairfrm

You got it Barb! We are the exception to the rule!! I usually am good about the testing too. I get results tomorrow from bloodwork and scans. A little worried this time. I've had increased pain the last 2 weeks. Hopefully it's se's. My dr said in the beginning that other than tests and scans that they gauge the success of treatment by your level of pain. So, if the pain has increased - does that mean the cancer has too. Suppose I'll know tomorrow. Keep your fingers crossed!

Foxy

Claire_in_Seattle

Cure until proven otherwise. 

BTW - Sue.....being Stage I, you should expect a cure.  There are some women who are on the 10% or so who get distant metastases.  Some of them have responded here, and I am so very sorry for everyone in that situation.

However, that is not what typically happens.  Most Stage I women really are cured.

And why borrow trouble unnecessarily??

Anyway, what you need to concentrate on now is ensure the highest likelihood possible of a complete cure.  That is, kick its butt to the curb once and for all. - Claire

sara1970

What a great discussion here - this is very helpful to me specifically as I will be meeting my MO for the first time next week and one of my big questions is how they'll be monitoring me moving forward. I am 3 weeks out of a BMX with TE's, my Oncotype score is 21 so chemo is a possibility, and of course Tamox. Like Claire said, try to ensure the highest likelihood of a complete cure. 

Still, I have no idea how I ought to be phrasing my needs/wants regarding follow-up care to my MO. And knowing that MSKCC has it's own way of doing things, I wonder how much is negotiable with them...

 Any advice? Thanks ladies xoxo 

lalisa

My oncotype was 12, 8% chance of recurrence. I see my onc every 4 months, she does an exam and blood work, but no regular scans and I am happy about that. It would just make me miserably anxious.

Once I had neck pain and she sent me for xrays and it scared me to death. I knew it was just stress and working out with a trainer who pushed too hard. The xrays were fine. I still get neck pain when stressed or when I work at the computer too long, but it goes away on week ends and when I take a vacation. My mother has the same pains, since she was about my age. I think it is just where we hold stress. I don't even mention it to my sweet onc. I would drive myself crazy if I felt I needed to test every little ache or pain. I've decided to trust the oncotype test, and if it ever turns out that I do have mets? I'll cross that bridge when (if!) I come to it.

We are all so different in how we handle the scary future. So interesting,

YamahaMama

Interesting thread...  My onc is also of the belief that I don't need scans done.  In some ways, that worries me, but I'm trying to go with the belief that, in his educated opinion, I really am cured.  I ended up in the hospital while doing chemo; had a really bad cold that just wouldn't go away, coughing, fever.  X-rays showed absolutely nothing, but high fever and tanked ANC landed me in for an extended stay.  Doctor ordered a CT scan of my chest looking for a blood clot, which ended up showing pneumonia.  Hospitalist said it was rare to have spots on both lungs.  So, at the next visit with my onc, I point-blank asked if the spots were mets, to which he replied no.  I had to have another CT scan before my final chemo, and both spots on the lungs were gone, so that was a HUGE relief to me. 

My DH has been wonderful over this ride, but he is a "glass-half-full" kind of guy, and doesn't understand when I worry about the fact that it "might" not be gone, or the fact I worry about whether or not any pain, etc., is an indicator of mets...  I have a friend who had Hodgkins 25 years ago...  I asked her if you ever get over the fear that it's going to come back.  She told me she obsessed over it the first few years, and finally decided there wasn't anything she could do about it and turned it over to her faith.  I don't know if I can ever get to that point, but I'm going to try. 

The gyn who I went to when I found the lump has been wonderful.  She had an appointment for me the very same day for a mammogram, had the results the next day, and set me up with a BS.  She wrote a letter to my insurance company, with "liberties taken" to make sure they would cover a colonoscopy for me, even though I'm not yet 50, because my mother had passed away from colon cancer last year.  So, I had the wonderful experience of having that done last week, but I liked the fact she has been very aggressive in my healthcare treatment. 

annettek

this is a great thread....I am sure in many opinions I have been overscanned in relation to my DX- but the initial CT and Bone scans are part of my BS course of treatment with ANY stage BEFORE surgery. I was in such an emotional mess over my DX I went along with it. I also had a bone density. Theonly thing that came out were some spots too small to classify- yet some said they were B9. Nobody suggested a PET unless I really insisted. Already freaked beyound compare I said no and just had my BMX. Then I got a new onc who insisted on a PET/CT scan. Her reasoning was twofold....first to see if there were any changes in those spots six months out and to have a complete baseline (if god no I ever needed one). She also said, this is the part that freaked me out...that she had seen too many women (and in her mind-one is too many) classified as a stage 1 who were not...that they were most likely stage IV to begin with but nobody ran a scan of any kind- the blood tests now all pretty much suck but the best we have so I get them for now every three months since I have decided against the AIs and went with some other options-she gives me the fullblown hormonal panel and all the others every 90 days (she is ticked at my choices but is determined to keep an eye on me:). Am I being excessive? Who knows? For me, not so much. Early is always best in any case, even knowing something else could pop up agressive overnight. I have the insurance and while it is a stretch for my 3Kout of pocket each year I am grateful to have the option. We get so many stories and courses of treatment from whomever is taking over our care. I hope as I move further away from DX and my reconstruction is completed I will come to look at my tests as tune-ups. Pain in the butt, but just part of maintenance. I always hold my breath when I take my car in, so I certainly go a little batshit when it is my body. nobody but any of you really understand what it is like. There seems to be no rhyme or reason to BC, like Barbe said, we beat the odds getting it in the first place. Some of the healthiest strongest women I have ever met had not an inkling anything was wrong got it. My MS reassured before my DX about the whole 80/20 crap. And yet,i already knew somehow. So go figure. On the other hand, when I start stressing out over dumb stuff unrelated to all of this I sometimes remember to say C;mon Annette-it's not like its breast cancer....get over it:)

suebak

DH and I spoke to a woman at a party last weekend.  My DH was asking her questions about her cancer.  Her answers were horriying to both of us.  She went on to say, "I had the same diagnoses as Sue, just a little under 2 years ago".  Oddly enough, she is seeing the same MO as I, at a major cancer hospital in Phila. She was stage 1, clean margins, negative nodes.  Had lumpectomy and rads.  Really thought she had beat this.  Six months later, reoccurence in same breast, then had MX. Again negative nodes. Eight months later mets to brain.  I asked if she had a pet scan or ct scan in the beginning, she said no.  DRs really did not fnd it necessary because her diagnoses was so good, 1.5cm mass, clean margins and negative nodes.  Have to say, her story scared the shit out of my DH and I.  I really believe you just never know what this monster desease is going to do next.

CoolBreeze

When I was done with treatment, I was done with cancer.  I didn't want to live the rest of my life fearful or thinking about cancer.  I wanted out! It wasn't denial, it was reclaiming my life.   I didn't post or read here for a while,  and while I did keep my blog up, I began thinking how I could shut it down and say good-bye to my readers.

Five months out of treatment, I became Stage IV.  I recommend that you pay attention to your body, learn what normal pains and abnormal ones are, keep your appointments - but don't DWELL.  Dont live on this forum, and don't live in the world of cancer.  If you trusted your onc to treat you, trust him or her now that you are done with treatment.  Report symptoms but let them decide if it's abnormal.

I disagree with the poster above who said you should push for expensive and unnecessary tests, and to lie about your condition.  That is not helpful advice.  PET scans don't show cancer until they are a certain size, usually you'll be symptomatic.  There are lots of false positives, which will scare you. If you have symptoms, then of course, push for care.  Report all unusual things to your onc - if you have a good one, he or she will take your reports into consideration and order the appropriate tests.

But, if you are going alone with a good life, you are symptom-free there is no reason for a PET.

If it comes back, it won't keep itself a secret.

Report symptoms and pay attention - learn to trust your body again.  You'll know when something is wrong, but it will take a while.  Our bodies are different and they betrayed us once but you will soon know what is normal for you.   

Those five months where I didn't have two or three weekly doctors appointments, a needle in my body or chemo SEs were great.  Enjoy that time.

The person who said this forum is skewed is right.  It's populated by early stagers who haven't let cancer go yet, or stage IV people, like me.  If you have a question, come ask it but once you are finished with treatment, it's time to slowly back away and restart your life.  I think a lot of people get stuck here in the world of cancer - where we all reinforce each other.   I see a tendancy for people to have an ache and search the forum and see that somebody else had that ache and became stage IV and freak out.  But, they ignore that 50 other people also had that ache and it was nothing, and the circle continues.    

Most people at Stage I and II go on to live to be elderly women.  But, they aren't posting here.  So, keep vigilent, know what is normal for you, then go relax and enjoy your life.   

lalisa

Cool Breeze, you sound like a wise woman. Thank you.