first chemo done

Cristl -

I will also write to you via e-mail.  I got some information that I will send your way.  As soon as I locate it electronically, I will send it your way.  

That said, I actually checked out the NCCN guidelines for "surveillance" (you can find at www.NCCN.org).  And, in fact, it does say that post treatment scans are not recommended other than mammograms for those women that have had lumpectomies. 

As you know, I am taking a "transitions to survivorship class" at our local Wellness Community.  Ironically, last night's class was on post treatment monitoring.   They brought in an oncologist to talk with us.  According to the doctor who met with us last night, the reason scans are not typcially ordered after treatment is that that "symptomology" is usually the first and most sensitive thing that will detect a metastatic cancer and that once it is detected, the protocol is the same whether you catch it at one week or three months.   She also said that symptomology is more "sensitive" to detect these types of things as scans can be "hit or miss".  She went so far as to say that scans can give a "false sense of security" because you can get a clean scan, think you are clear then "ignore" symptoms that can show up afterwards because the scan was clear. 

So.. according to this doc, what she looks for in terms of "symptomology" that MIGHT be a problem are the following:

1) Unusual or unresolved pain (vs. your personal baseline)

2) Shortness of Breath

3) Frequent Headaches

4) Sudden onset fatigue

5) Chronic bone aches (unusual ones beyond what can by typically caused by the AIs).

She also mentioned that she does not typically test for tumor markers for the simple reason that there are way too many cancers that cannot be picked up by tumor markers.  In fact, she said she has seen cases where a patient was "riddled" with cancer and the tumor marker tests were clean. 

Net, in her mind, symptomology (or lack thereof) of the patient is the most sensitive "test" to put her mind at rest that the patient remains cancer free.   That said, she said if her patient has unusual symptomology, she does not hesitate to order a scan at that time. 

I hope that helps.

Jill

Hello All...Hope your holidays have been joyous!  Looking forward to a healthier 2010!!!  WOW...am I glad I finally decided to log in. I've been happily preoccupied with family during most of the month of December & will be babysitting the New Year in tonight, but I can't believe how pertinent all of your entries were to how I'm feeling...except for the incredibly marvelous baby news for Shannon & your Mom's great checkup!  I will have my mammogram this afternoon..6 months post lumpectomy (Jill, interesting you heard this at your class!).  I had my 6 week post chemo checkup on 12/18 & was a bit overwhelmed. With my family history of cancers, my onc strongly suggested genetic testing. I'll have it in Feb. I told her my sisters and cousins were against it (daughters are in favor) and she said they have their heads buried in the sand   I'm starting Femara, which was planned all along, but when I asked her about how to stay on top of this not coming back, she said she wanted to put me on a drug called Zometa. It's used for osteoporosis (which is also in my family) but strengthens the bones...the place where she said cancer may be likely to show up. She said there are side effects but the pros outweigh the cons as far as being beneficial to warding off cancer's return.  It's an infusion every 6 months for 3 years.  I am so torn...haven't I already done enough to my body????  I, too, am in tune with my body...Janet, your diagnosis and mine are about the same (although I'm positive x3) and I found my lump. But...my back hurts and it worries me, too!  I will see my onc every 3 months for a year so, I'm thinking I'll be able to share my concerns at those appointments. It stinks to have aches and pains that didn't exist before all of this bc. I think you may be right, Janet, strengthening the core may help my back issues...time to go back to the gym   For sounding like a negative nelly..I am thankful to be alive & appreciate being able to share this journey together!

THINKING OF ALL OF YOU & WISHING YOU A BLESSED NEW YEAR!   

I hope everyone had a wonderful holiday and that you are all doing well.

    RonnieKay- Any word on your mammo yet?  Wishing all is well with you.

    So....mom is now being approached with another treatment option.  I dont have many particulars on it yet, i think they will be discussing it in more detail in another month or so, but, it has to do with the "routine chemo" treatment not being able to penatrate the barrier to the brain.  This treatment is supposed to target this area in particular and reduce the chance of it reoccuring there as her type of cancer has a higher rate of reoccurance to the brain.  Lots more to research in the weeks to come, but, wondered if any of you know about this.  For now, all is seemingly well and she is doing great.  She is back to running circles anround me, which is fantastic to see.

   On another note, a lady friend of mine was diagnosed.  She underwent surgery and has her 2nd treatment under her belt.  IDC stage 3, grade 3 lymph involvement. She is in great spirits and tolerating the chemo pretty well.  This damn stuff is everywhere.

Looking forward to some happy reports from all of my lovely ladies here....take care all.  Til next time

by the way IT's A GIRL!!       Shannon

RonnieKay....such fantastic news on the clean mammo...yayyyyy!  Happy you are feeling better.

As far as more treatment goes for mom....they havent discussed this other option any further yet, still waiting on the details.  It is so hard to know when enough is enough. 

I am hoping that the thread is quiet because everyone is pleasantly busy with life and that all is well for everyone. 

I am naming my baby Ava Grace.  A bit old fashied I suppose, but I love it all the same.

Take care til next time.................Shannon

Jill:  I am so sorry to hear about your father-in-law.  All I can say is that cancer is truly an insidious disease in any form and in any place in the body.  There's really nothing I can say, but please know that you and your family are in my thoughts and prayers.  Janet

Thanks guys !

Not really expecting anyone to say anything, as I know there is not a whole lot anyone can say or do.  It is a hard thing to deal with all around.  But, I very much appreciate your thoughts and prayers.    My husband is having a pretty rough time with this as he is very close to his father.   Doing my best to support him and his family through this - whether it be helping them maneuver the medical maze/jargon, picking up extra slack that is not getting done otherwise or just being there when he needs it.  

In any case, my father in law seems to be a bit better the past couple of days.  I think largely getting a plan in place and getting things moving relieved some of his anxiety.   He starts chemo tomorrow.  While it is very unlikely it will eradicate this, we are hoping it can shrink it significantly to give him a little better quality of life for the time he has left vs. what have been otherwise. 

Thanks again.  I appreciate you weighing in.

Jill  

Jill,  I just caught up with these posts.  I am so sorry to hear about your father in law.  All there is to say is that CANCER REALLY SUCKS.  Your knowledge will help him greatly and be a comfort - that I am sure of.  You have been so great for all of us here on this board.  My father was dx with Kidney Cancer around the time I was dx and now was diagnosed with esphageal cancer.  Now is is taking several chemo's.  It is rough watching a loved one go through it.  You and your family are in my prayers. 

Thanks RonnieKay! 

I thought I would post this article I saw regarding HER2+.

http://insciences.org/article.php?article_id=7915

LAST herceptin TODAY !   Woo-hoo!    Can hardly wait to get this done.

Jill

Jill,

 Glad to hear your good news.  Can I ask how your father-in-law is?

Janet

Jill & Cristl,

Great to see you guys on here still.  I check this site every so once in a while just to see who's been here.  When I was going through treatment this site was a savior for me. I received such caring and guidance from so many and at times I miss all my cancer friends (it is so sad that we had to meet through cancer) but....Oh well.

My last Physical Therapy appointment is next week so it is another graduation.  It means that I guess I am suppose to be "rehabilitated".  I have mixed emotions regarding this because I still don;t feel as though I can move my arms properly.  Oh well

Jill glad to hear about your father in law.  I am with you, deciding what to do can be worse that once you get into the action of doing it. I hope he is resting comfortable and I hope Bill realizes that he is a great son.  Every other weekend there (6 hours) away I am sure it is difficult for him, both to see his Dad in bad shape and being away from the family.  I hope you are not working to hard, but having lots of fun, I know how much work is a great part of your life ....and that you are doing great things not only for PG but for the world.

Hang in there everyone, thinking about all of you.  Kristi

Hello all !

Long time, no hear.  Ronnie Kay, how great to hear from you.  Sounds like you are doing great. 

I suspect by the time you get this, you will have had the MUGA scan.  I found that one to be relatively easy.   Inject you with stuff and stick you under a scanner.   Done in about 15 minutes.  Not so bad, relatively speaking.  Sorry to hear about the bone aches.  I know LOTS of women who have the same issue on the AIs.  And..most of them do improve over time.  So, hang in there.

And yes, I work for P&G.  I managed to keep that out of the thread for like two years, but had alluded to it several times.   Kristi and I have been corresponding on e-mail and have even visited each other twice.  So, she has a lot of the details of my life "behind the thread".  Anyway,  I am glad you liked our Olympic campaign.   I can't speak for the rest of the company or as a company representative, but as an employee (and a consumer), I was very proud of it.  

As for me, the big news is that this Wednesday is the day I FINALLY get my port out and the blasted hernia fixed.  I can hardly wait for this to be done.   I find I am still getting used to my "new normal" - seems I got an awful lot of aches and pains that used to not be there.  Doc says the swelling and soreness on my right side is "radiation fibrosis", and will likely be there for years.  She is just a wealth of good news.  She also ordered an MRI for my back.  Personally, I think I am just compensating all over the place which has my back out of whack.  But, she wants to do the darn MRI.  A little aggravated by that because I thought I was done with tests.

Not much change on my father in law.  He is a little less than half way done through treatment.  The tumor has shrunk, but he side effects are kicking in full force at this point.   But, got to give him credit.  He is hanging in there about as well as can be expected.

Oh.. and one other thing I failed to mention.  How many of you have had your vitamin D levels checked?   I had heard a number of ladies saying theirs was low, and asked my oncologist to check it a while back.  Turns out mine was VERY low (I got that call on Christmas Eve, believe it or not).   She's got me taking like huge doses of Vitamin D and we are getting it checked again (they took the blood out of my port for the LAST time today).   I started digging into it, and there is a fair amount of research out there correlating Vitamin D to breast cancer and recurrence stats as well.   So..if you haven't, you might want to ask your docs about it.

Jill  

Hi All,

Nice to hear from you all again. 

Okay, all you smart women, what else should we be checking on this side of treatment?  As a triple negative, I want to stay on top of things but sometimes, I feel like I don't even know what to ask .

  At my last onc follow-up I specifically asked if a recurrence anywhere in the body would show up on the blood work.  (Of course, I don't really know what blood work he orders).  Doctor told me yes, but when I asked the same question of the Lab Tech, she said no.  When I questioned why the contradictory answers, I was told (by the Nurse Practitioner) that I shouldn't have asked the Lab Tech and that what the Doc ordered was a fine "first level screening".   So any advice would be appreciated.

Janet

Janet -

Hey... great to hear from you !  I have an answer for your question, but I am not sure you are going to like it.  Basically, there IS a blood test for breast cancer tumor markers that is designed to pick up recurrence in the body.   It is called CA15-3.   The reason I said you might not like this is because a) a lot of doctors find it unreliable and b) some don't even run it because they don't think it is as sensitive a test as symptomology.  I copied a paragraph below from the American Cancer Society take on tumor markers:

Some women who have been treated for breast cancer have blood tests for levels of the tumor marker CA 15-3. This can sometimes show that cancer has come back (recurred) before the woman has symptoms or the cancer can be seen on imaging tests. Many doctors question the test's value, though, because it isn't clear that it is better to treat recurrent breast cancer before it is causing symptoms. In studies done so far, starting treatment earlier has not helped women live longer or feel better.

This could be the reason for the mixed answer.  The thing that got to me the most in your post was the snippy attitude of the NP.  You have a right to ask anything you want to whomever you please - and ask for clarification if the messages are mixed.  It is your body after all.   OK.. off my soap box now.

 In any case, the answer to the recurrence "scanning" question can be unsettling to those of us that could potentially recur.   I have dug into this one long and hard and the answer from everyone (including doctors I have talked with personally) is that symptomology is the single most sensitive factor to determining whether a cancer has recurred.    The rule of thumb is that if you have an unusual symptom (ie. something new) that lingers for about two weeks, get it checked.   Any symptom - shortness of breath, headaches, localized pain, unusual digestive habits, "bumps" on the chest wall, etc.    Most docs also don't order regular scans (other than mammograms/MRIs for women like myself who have had lumpectomies). The reason why is that clean scans can provide a "false sense of security" and cause people to ignore symptomology.  One doc told me she had a patient with a clean scan and was found to have a recurrence a couple months later.  But, she ignored the symptoms she was having because of the clean scan.  Make sense?

That said, there is a LOT of research going on in the tumor maker area for breast cancer.  I went to a big medical symposium in Frankfurt, Germany last November and ran across a woman there who was working this exact question.  She worked out of the University of Maryland.  Her early clinical results for measuring recurrence via a blood tumor marker test were very encouraging.  So, let's see where it takes us. 

Oh, and by the way, I hope you and Chelev get to meet for coffee.  That is exactly how Kristi and I met the first time.  We were both mid chemo courses, in hats and at Starbucks.  We stayed there for like 2 hours.  I am sure we got a lot of funny looks and were quite a sight.   But, looking back on that now, there was a certain peacefulness that came with just connecting with someone who understood your plight.  

Take care.  I hoped this helped.

Jill

Janet -

Not sure how philosophical this will be, but very interesting that you chimed in on this topic.  I had a discussion just Friday with my oncologist about the same thing.. and boy, did she ever let me have it.   Called me on the carpet big time.   Wasn't going to bore you all with that, but since you asked....

Basically, I will be 45 years old 9 days from now.  I, for one, consider that to be relatively young in the grand scheme of things.   I bring this up, because there are days I feel like I should be 80.  I got aches and pains (mostly back aches, radiation fibrosis, joint aches, etc.).  And I am one that takes relatively good care of myself for the most part.   To top it all off, I found myself feeling really just plain ANGRY.  I knew it was anger.  Not exactly sure what I was angry about, but angry none the less.

I asked my doctor on Friday whether this was my "new normal" (funny you used the same term), and she said, "I don't want it to be for you".    She then proceeded to lecture me big time about "never taking the time to assimilate and grieve through the whole experience."   Her exact words were you "blew through chemo and radiation like it was nothing" and even got after me for working through the whole thing (evidently, less than 1% of her patients work through chemo).  By now she was on roll and letting me have it for my obnoxious work schedule (exact words were "you fly all over God knows where, sleep on airplanes and make million dollar deals all hours of the day and night").  Then she said.. ."and you wonder why you are angry".  

So.. she basically said that this was not my "new normal", but rather my body was in revolt and I had to slow down.   AND slowing down DID mean taking some time to really process what I had been through with this experience.   That said, she did mention that type A overachievers (ahem...like me) are not the only ones that do this.  She said that she sees this a lot.  It is like at the end of everything you just kind of exhale and everything you have held in check over the previous year spills out.   I mean, think about it, during treatment it was all we could do to keep focused on just getting through treatment.  Lots of stuff had to take a back seat. 

As an aside, I had mentioned some side effects I had been having with my period - recall that I did not stop mestruating even during chemo - and she growled "even your damn ovaries are over achievers".  Have to admit, I had to laugh at that one.   She was really on a roll.

To be honest, I am not exactly sure what I am going to do about this.  I have never been good at "mellowing out".   "Intense" is more my schtick.     I am certainly open to suggestion.  My husband is trying to get me to take a yoga course for starters.

Anyway, if it makes you feel better, I just wanted to let you know you weren't alone.  I know a lot of us in search of our "new normal" - and haven't quite got it nailed yet.    Also, the whole depressed, angry thing in the void after treatment appears to be relatively common.   We really did not take time to process... so, I guess not surprising it comes crashing when we exhale.   Probably not what you wanted to hear.   But, hey... at least we can search for our "new normal" together, just as we experienced treatment together.   This really is a journey, isn't it?

Jill