Well I'm just going to ask

Debra · 09-30-2008, 08:30 PM

I often don't post questions as I usually feel my questions will sound frivvy but I am in the mood to not care tonight.

How is one suppose to know they are NED or not when one doesn't have routine scans? Sure I ache; all the time. Sure I have headaches---almost everday. Yep, dizzy too as I am told aromasin causes that. So--do I run to the doctor with all this over and over and subject myself to scans? Never had a pet scan and frankly I don't want one. Not sure if what I am feeling is reason enough to have a PET scan and they are a lot of radiation exposure so I don't want one unless I really need one but that's it----how will I know if I really need one? Many of you know we know that better then the docs do sometimes.
I guess I am just tired of answering "I guess I am fine" when people ask "so are you cancer-free now" "did they get everything"? What I want to say is "I wouldn't know-----I guess I just need to waite and see if I start to have chronic bone pain or shortness of breath"! I am tired, tired, tired, of "wondering". Someone tell me how to stop that. It is exhausting. Maybe I am like this right now because it is October----too many reminders around me. I know that is all good but sometimes October puts me in a dark place. I want out now.

Jackie07 · 09-30-2008, 08:50 PM

I was not aware of the term 'NED' until I got on this board. For the whole four years before I found the recurrence I always thought everything had been taken care of, especially when all my scans were pronounced 'clear'.

But there's left-over cancer tissue there that was misread (as scar tissue) the whole four years. So my 'recurrence' was not detected for 4 full years.

According to statistics, lumpectomy has a 50% chance to have recurrence, and I suspect the majority of them are us Her-2 people since it tends to grow rapidly.

I think people tend to stay away from those who have 'negative attitude' all the time. My husband has gotten tired of my complaints of anything related to my cancer. And I am by nature a very, very positive person.
Usually it's the person who are not strong enough to take the 'complaints' or they might just not have time.

There is a Chinese saying, 'You can't keep good children around your bed when you are chronically ill.' It's just 'cancer fatigue'. And it's just human nature.

Stay on this board and play the 1000's commemorate thread is a way to feel being a part of a community and take our minds away from ...

It might not be a bad idea to get a PET scan just to have peace of mind.

Just my 2 cents.

hutchibk · 09-30-2008, 10:36 PM

Debra - conventional thinking is stuck in mud right now. There are many old school, or simply NCCN guideline following docs, who still believe that regular scanning and monitoring is a waste of time, money, a psychological drain on the patient, etc. There is also a school of old thought that believes that it is appropriate to wait for symptoms and then treat, as opposed to finding a recurrence in it earliest stages, as well as the belief that finding a recurrence earlier hasn't been proven to offer any better or longer survival chances or improve quality of life. If that were true, then how can the case be made for "early detection" to begin with? Why would we even do mammograms to begin with. It is a hypocritical stance.

Thankfully my doc and I agree that is all total hogwash. Many forward thinking and visionary oncs these days also think it is hogwash, hallelujah!

Having HER2 cancer is reason enough to be very vigilant. It is aggressive and opportunistic. The earlier you find it, especially before any symptoms, the healthier you are apt to be, and the easier it is to tolerate what ever they need to throw at it. You will notice that many of us here are metastatic patients and are tooling along at a pretty fine clip - tolerating lots of different treatments to slow it down and knock it back, year after year after year. If our mets had been found only after symptoms, then I can promise you some of us would not be having the success and quality of life we continue to have. It is a matter of staying ahead of this disease... never give it a leg up if at all possible.

Based on a true story, here's a case that describes how horrible it can be to wait for symptoms: A patient with stage IIb HER2 not followed closely with tumor markers or scans of any kind once she completed initial treatment. She had "exit" CT and bone density scans at the end of treatment. She sees her onc every 3 months for a clinical check-up. Without any symptoms, the onc follows standard recommendations and does not do any PET or CT as part of her monitoring. Two years out and presumed to be NED, she trips walking up the steps to her front door and surprisingly breaks her hip at only 50 yrs old. It is determined through an MRI that the reason it broke was due to a totally deteriorated hip bone, and it is not only broken, but shattered and completely compromised by cancer in the bone, as well as other spots of bone mets throughout the body. She now faces the challenge of a tremendously painful broken hip combined with radiation and chemo all at the same time. She is confined to a wheel chair for months because surgery is not possible until the metastasis is addressed, if it is even deemed possible at all. She also needs aggressive pain management at the same time she is chemo sick. This is what I call a quality of life issue that could have been completely avoided. Had this bone met been dx'ed through a combination of regular scans and back up tumor markers (or CTC, circulating tumor cells bloodwork) when small and extremely treatable, she would have had chemo (and possibly radiation) and chances are slim to none she would be struggling with a broken hip and an extrememly deteriorated and debilitated quality of life.

In my case, we monitored me very closely. I recurred 14 months out from initial treatment, but it was small we were able to knock it back. We have since found very small recurrences about once every year, and have been able to treat them fairly easily... we just keep responding and changing treatment as necessary to keep a leg up. I have tolerated everything really well. I have a fantastic quality of life for someone who lives day in and day out with cancer. My brain mets were found 18 months ago, asymptomatic, on an MRI. We have been able to knock them back with Tykerb/Xeloda and nothing else until last month when they seemed to "wake up" a little and we then did targeted IMRT radiation on the 5 spots. I can promise you that I would not have had nearly the treatment choices or quality of life that I have had if we had waited for symptoms to dx my brain mets.

It is never to late to start being careful. Sorry if this was longwinded, but I think it is important to illustrate the wrong-minded and archaic thinking of some oncs who don't see the bigger picture.

Our plan was PET once a year, bone scan and CT every 6 months, clinical exams and tumor markers every 3 months. Once I was dx'ed with mets, that all changed, but I was very comfortable with that plan when I finished my initial treatment.

BethC · 10-01-2008, 06:33 AM

Debra, I'm with you on this question. And I have a few more questions that have come up in this post.

First, I was not aware of the recurrence rate for lumpectomies being 50%. Is that recurrence rate vs. mastectomy or all Her2+ or something else? I was told and read statistics that the outcomes from mastectomies and lumpectomies + radiation were roughly equivalent. Now I'm worried I made the wrong decision in my surgery. I have had 2 mammograms since my radiation ended in April and I found out yesterday that the radiologist has been watching one area of "benign calcifications" on the lumpectomy breast. They said everything looked ok but would have to wait for the final report. OK, but not as reassuring as I would have liked.

My other question is the follow up plan that Brenda mentioned. Was your plan to alternate the PET with CT/bone scans every 6 months? or have CT/bone scans every 6 months? And what are the tumor marker tests? I don't know if I've ever had any tests other than the original ones to determine my type ER/PR/Her2neu.

My doctor is one of the ones who follows the theory of don't test unless there are symptoms; however, he is receptive to ordering tests. I never have symptoms of anything, even when I have something, so that makes me nervous that something will be missed. I am scheduled for a PET/CT on Friday because I am having unexplained blood clotting issues.

Anyway, this was more long-winded than I intended. Thank you everyone for your contributions on this board. We all draw support from each other.

Love,
Beth

dlaxague · 10-01-2008, 07:46 AM

Beth said: First, I was not aware of the recurrence rate for lumpectomies being 50%.

I've never heard that figure and am quite sure it's wrong. First of all, risk of recurrence is based on many factors of pathology, not on the type of surgery. Maybe she was thinking of a local recurrence after lumpectomy without radiation - but that number is still way too high. And almost everyone does have radiation after lumpectomy.

Debbie Laxague

Colleens_Husband · 10-01-2008, 08:03 AM

I have to agree with Debbie. Those numbers are way too high. We just talked to Colleen's radiology oncologist on the 17th of this September and she said the risk of recurrence with a lumpectomy and no radiation is between 39% and 40%. A lumpectomy with radiation has a risk of recurrence of less than 10%.

Gerri · 10-01-2008, 08:08 AM

Yes, 50% is too high. I'm not sure where that statistic came from but here are some interesting links regarding recurrence rates for lumpectomy vs mastectomy.

http://www.medicine.ox.ac.uk/bandoli...07/b107-2.html

http://health.discovery.com/centers/...astectomy.html

http://clinicalevidence.bmj.com/cewe...2/0102_I19.jsp

Becky posted them on another thread.

norwegian · 10-01-2008, 12:49 PM

Debra,-
Oh,- I so much agree with you!!
Like you, I'm so tired of being scared...

All my friends and family are very happy for me - they all think I'm cancer free-( because I look well they say..) and because I see my onc every 4 months. This is very comforting to them.
And who can blame them?

But really,- what does my onc do to me when I see him? Well, he feels my scar, and touches my armpit, and my throat. He tells me to do a mammographi. And then - he tells me that I'm well now. See you in january.

My family asks; what did he say?
I answer; He said I'm well, no evidence of disease.
My friends say: You must be so happy now!!!
I say: Yes, of course, I'm very happy....

But honestly (and this make me a little ashamed) I'm not very happy.

Because I wonder- how can my onc say I'm NED????

I hate cancer.

I hate cancer.

Mary Anne in TX · 10-01-2008, 01:07 PM

Hi Debra! Peace and encouragement to you! Thank you for starting this thread. Brenda, you always cut to the chase. Thank you so much for the info. I see my onc on Friday & will make arrangements for CT and bone scans. Can't predict the future, but sure can do my part. ma

Sherryg683 · 10-01-2008, 01:30 PM

Once you have cancer, you never really know if you are totally cancer free. I had PET/CT scans done every 3 months for the first two years because my Oncologist felt that it would most likely come back within that time. I now have them done every 6 months and will continue that for awhile. I am lucky that my oncologist seems to think that if that's what gives me peace of mind, he doesn't mind doing it. I have not and never will buy into the "wait till you have symptoms" thing. I had no symptoms when I was diagnosed and it had already gotten into my lungs, if I would have waited too much longer, I probably wouldn't be here now. I have been lucky enough to be NED for quite awhile now but I am still uncertain. In the beginning, every ache and pain that I had that wasn't normal, I thought was cancer. I am now becoming familiar with what my new "normal" achy body feels like and don't freak out near as bad. If it concerns me, I have it checked out. But I know all too well that cancer sometimes doesn't give any sypmtoms at all. My brothers liver was totally eaten up with melanoma and he didn't feel anything in that area. Going through scans is very stressful, but it's not half as stressful as sitting here wondering "if" it has come back. I guess if it does come back, I want to be on top of things and not regret that I hadn't done everything I could to make sure everything was OK. I am speaking from a stage IV diagnosis here, if I were diagnosed at an earlier stage, I may be more inclined to put it in the past and not have near as many scans done. So when people ask "how are you". I smile and say "fine", I kind of cringe inside when I say this because I really have no way of knowing if I'm fine or not....sherry

Mary Jo · 10-01-2008, 01:59 PM

Hi Debra......

Thanks for sharing your feelings/fears with us who care about what you think AND never think your questions would be thought of as "frivvy!" There is no such thing as "frivvy" around here.

I hear ya on the "NED" talk and all that goes with that. Sadly, there is no crystal ball and none of us truly every knows if cancer is lurking "in their somewhere" unless of course a scan or test of some kind picks it up.

I am of the other extreme and do not want regular scans. I know there are some reading that statement that will say "she's nuts....OR....she's hiding her head in the sand" of which I'd have to reply, I'm neither (well, maybe a little nuts

). It isn't about "hiding my head in the sand or being in denial" but for me it's about living my life, the quality of my life and what I can or am willing to endure.

My life would be greatly diminished if I subjected myself to regular scanning. It's just way to stressful for me. Now, don't misunderstand me, I have had scans (2 PET/CT's/1 abdominal CT/1 bone scan and a transvaginal ultra sound) and believe in them (for me personally) when I feel the need...like when I feel symptoms warrant it. However, more than that would make me nuttier than I already am

I just can't live in that "mode" ~ the always looking for and waiting for cancer mode!!! I just can't.

My onc. also is not a believer of routine scans because of "chasing" what isn't cancer and the emotional havoc that can cause. He also "buys into" the NCCN guideline BUT that being said he is of the mindset that if the patient wants them he will order them. The patient, in his eyes, is what determines what tests are ordered as he believes that all patients require different "things" for their particular quality of life to be good.

I know many reading this are thinking that 'IF' my cancer returns I will regret my decision in not wanting regular scans but I honestly don't believe I will. What "comes next" I will handle when I get their. "IF" I get their and I'm not planning on it!!

I know it sounds as if I have an "I don't care" attitude or an attitude that says "if I say it 'aint so, it 'aint" but I truly do not have that kind of attitude. I am very diligent in how I care for my body and do all the things (or I should say TRY to do) all the things to stay healthy AND happy.

So Debra....I know I was of no help to you

but hope that my opinion is just another of many opinions that will be given here for you to understand that you are not alone in your cancer fears. We all have them AND we all have different ways of living with those fears. This is just my way. It's what works for me.

Blessings of Peace I send to you......

Mary Jo

StillHere · 10-01-2008, 04:51 PM

Mary Jo
Your posting stated all that I feel, but much more eloquently than I ever could. As I have stated before, I am sure I would be doing everything possible to stick around if my kids were not grown and independent. Right now, while I am feelin fine (Except for joint pain & crazy hot flashes) I am taking lots of vacations, trying to savor each day and create as many pleasant memories as possible for my family. I do try to walk a lot, but I also eat whatever I want because I really enjoy foods that I fully realize are not the most healthy. Bottom line is we all need to find out as much information as we can to make INFORMED life decisions that we can live with - Hopefully for a very long time. OK all my health nut sisters & brothers out there - let me have it ! Just call me fat and sassy. Peace Karen

Patb · 10-01-2008, 05:28 PM

My oncologist and internist are at odds now about scans
and tests to have. I tend to agree with Brenda to have
the scans even though I am a nervous wreck that day.
My oncologist says ok to have, my internist says too
much radiation that could cause something else. I insisted on full body CT scan in May, two year anniversay and had one. One small lung nodule showed
up that should be followed. I feel if I had had a base line we would know if it was new or had been there all
along, but we don't. I'm having another CT scan on
Monday to check the lung nodule and then we will go
from there. I feel if found early, treatment is easier
and I have already had a lot of radiation with my
lumpectomy and radiation so whats a little more.
patb

'lizbeth · 10-01-2008, 06:06 PM

Thanks for the timely discussion. I just finished the Taxotere and was in the now what? stage. I'm having a Pet scan in 10 days. I think for me - I'd rather know now if there is any evidence of disease then wait until it might be too advanced to sucessfully treat.

'lizbeth

dlaxague · 10-01-2008, 08:20 PM

Thanks, Mary Jo, (or is it Marejo - how do you spell your name?), for saving me the time to respond with my personal stance on this, which is pretty much exactly your personal stance. Plus you said it better than I would have (smile).

Once again, we see that there are SO many reasonable and perfectly good ways to deal with a breast cancer diagnosis. We cannot tell someone else how to do it. We can offer a variety of options, and tell stories of what worked for each of us, as individuals. But each person has to consider the options and make his or her own decisions, based on their mind/heart/gut/spirit - and that decision will be exactly the right decision for them. I'm sure of it.

I used to question and argue heatedly with thinking that differed from mine, as if (hah!) there could be only one right answer. But having watched for awhile now I realize that was such a narrow and ego-centered perspective. Now all I care about is that all sides are presented. I offer my stance not to argue against someone else's, but to make sure that readers who are still exploring what is right for them will have all the information and all the choices and perspectives on the table.

There IS one more aspect to this discussion which is never popular and I rarely get responses when I mention it. But I'll throw it out there anyway. (Climbing onto soap box now.) If you live in the US, you know that we have major issues in health care. We particularly have issues of access to care for the underserved populations - the poor, the immigrant, and sometimes the elderly. And increasingly, that group includes the working and not exactly poor but the insurance-poor (high deductibles, incredible monthly premiums, etc). In the broad sense, there is a finite number of health care dollars to spend. If we, with no evidence to support our desires, demand scans every six months forever, after a primary breast cancer diagnosis - we are ultimately helping to deprive the underserved of basic health care services. Scans are really expensive. There is no evidence that detecting a recurrence before there are symptoms will make any difference to quality nor length of life thereafter. I know there are reasonable questions about this - I addressed them myself in another thread a few days ago. But I cannot support every HER2+ person who has completed primary treatment getting regular scans to reassure them. My Scots genes rebel. It's just too expensive.

I know that classically we are supposed to look at risk/benefit. But at some point, we are going to have to also look at cost/benefit. I hope that we'll look at it before we (this country) are in full-on crisis but I'm beginning to lose hope about that. An incredibly unpopular thing to discuss, especially if you are a politician, an ill person, or an ill person's loved one. But the cost of the technology that we now posses has FAR outstripped our ability to pay for that technology, and we are going to have to figure out what to do about that. We are going to have to ration care, and justify costs using some kind of cost/benefit or risk/benefit formula. Regular scans post-adjuvant primary breast cancer treatment is not going to score very high on that scale. Treatment of the major chronic diseases - diabetes for example, will score high -big returns for small outpay. Scans after primary breast cancer is the opposite - very small returns for huge outpay.

This issue plays a part in my reluctance to ask for any kind of regular screening in the absence of symptoms. Who am I to ask for such indulgence when people in this country are suffering for lack of very basic healthcare? The reasons Mary Jo stated so articulately also play a part in my choice - probably a larger part. But still, two+ years ago when I had persistent headaches and my PCP suggested an MRI, and I had the MRI, and it came back clear - I felt guilty for having been a poor steward of the resources. I guess I'd have felt better if it had found something (sorry, gallows humor, but not entirely untrue).

Stepping carefully down from soapbox now. I think that I get more strident in October - it's all the pink stuff. And this is only October 1st. Sigh.

Debbie Laxague

Jackie07 · 10-01-2008, 10:09 PM

Statistics don't mean anything if we are the ones that got recurrent cancer. Because to us, it is 100% recurrence rate.

What I remembered was a chart in a pamphlet back in 2003 when I was first diagnosed. The statistic stated (probably a number based on a 2002 or 2001 figure) that lumpectomy itself has a 50% recurrent rate. With radiation, its 5 year disease free survival rate becomes the same as mastectomy, which was around 85%. And if I have chemo, the survival rate increases to 92%.

Because of the high recurrent figure (50%), I argued with my surgeon and wanted to have bilateral mastectomy there and then. She reassured me that the result would be the same. She still insisted it when the recurrence was confirmed. Perhaps in the end, the time we bargained for is going to be the same.

I think the statistics was for the general breast cancer group. Because back in 2003, Her-2 positive breast cancer had much worse survival rate. Herceptin has brought up the survival rate dramatically and the statistic has changed dramatically in our favor.

Debra · 10-02-2008, 09:04 AM

Well everyone - I had a good cry today! Not because I am still in a down mood but because I am so thankful to have you all on this site when I address something because you all are the only ones that really truly know how I feel. I feel so alone amongst the rest of the world. I know I am echoeing what has been posted many times!
Someones thread (I believe Norwegian) stated "everyone thinks you are fine because your doctor says you are and you look good". No one understands what goes on in our minds. I know many cancer survivors have more health issues and I feel guilty for feeling this way.
What I have decided after reading the posts is I am going to ask for a PET scan since I am having chronic hip pain. I believe I am putting something off that should be done. I keep telling everyone I have "bursitis" only because I want to convince myself of that. I think it is time to have that PET----even just for piece of mind since I have never had one. I am not doing it just for the heck of it---I am doing it because I am having symptoms. I just had to realize that but frankly was afraid to say I was having symptoms. I just cannot live like this everyday------I am so scared and why now? I will be three years out in December. Why is this hitting me so hard right now? I find myself bargaining; "well if it comes back, I just want both my kids to be out of high school----that would be four years from now.
I don't know how everyone else feels but I am not scared for myself---I don't want my family to go through this again. For you caregivers and loved ones out there, the fear is for you I believe. I can handle what may come to me but I am not sure my family can.
I will do my best to try and not worry about something that "isn't" right now.
I just need to get through the waiting game with the PET scan results. You all know how awful that is. I think that is why I put these things off.
Sorry for the rambling and again, THANK YOU everyone.

Mary Jo · 10-02-2008, 12:22 PM

Dear Debra....Just wanted to give you a HUGE hug just because.

Glad you are going in for the PET. Sounds as if it's needed for some peace of mind.

God's Peace to you,

Mary Jo

10-02-2008, 12:39 PM

I think the high end of recurrance with lumpectomy and rads is about 15%.

Generally, young women tend to have higher risk of recurrence. In young women with a family history of breast cancer, the risk of a new primary can be as high as 40% (BRCA or no BRCA).

http://www.medicalnewstoday.com/articles/4608.php

http://www.emaxhealth.com/98/4983.html

http://jco.ascopubs.org/cgi/content/full/19/18/3798

As with all things, an individual's risk may be very different from the group risk. (If you're the one in a million, then it's 100% for you.)

Tammy Lou

10-02-2008, 12:43 PM

P.S. I get scanned routinely. I hurt ALL OF THE TIME, particularly in the first couple of years after treatment.

No evidence of disease.

The drugs that keep us alive have side effects. In some cases, a pain in the butt...literally!

I know these aches are anxiety provoking.

If you need scanned for your peace of mind...ask for it.

Mobic really seems to help with the general aches, etc.