MIDDLE-AGED WOMEN 40-60ish

Chartruse

That's cute...

Eph3_12

Had my next to the last visit with my onc today.  She said technically I don't need to go back since my surgery date was May '09, but since it wont be 5 yrs on the AI until Nov, I told her I'd come back in 6 months to high 5 her.  She said that it would be kinda nice if I had a yearly appointment with her, but since I seem so determined to end the relationship (I love her, but I want to be done!!!!) she is supportive.  She said we will celebrate in Sept! yippee!!!!!!!!!!!  BUT (isn't there always?) she says I MUST find a PCP that I will stick with (I'm kinda flighty about them-they piss me off, I'm gone).  So that's my goal in the next 6 months.  Find the PCP for me.

NativeMainer

Good for you, Eph!  

barbe1958

My onc is actually seeing me more often now that I'm 5 years out. My ER+ cancer is slow growing, so if is going to recur, it gets riskier after the 5 years. Please stay vigilant Joni!!!! I've developed these silly enlarged lymph nodes in my armpit and neck that they've been watching. So far they've just been under biopsy size......less than 1 cm. Breast cancer doubles in size every 180 days - 6 months, so if they do double this time then we move quick.

elimar86861

Hilarious comic, mac!

Eph, Sounds like a plan.  When you get to be "low maintenance," I know many just go with their PCPs, even if the annual blood draw includes the one looking for tumor markers (for those that get that.)  If anything out of the ordinary shows up, you'll get referred back to your team, so the important thing is that you do get continuing follow-up from somebody.  After what we have all been through, yearly sounds like heaven.

Barbe, Would you by any chance have a chart that shows the recurrence curve for the ER+ cancers, going out past five years?  I remember seeing one somewhere, and I am interested in those long term odds now that I am getting close to the 5-year point myself.

The usual chart is the one lumping all pathologies together, where recurrence generally peaks at two years.  I will Google around and see if I can find the chart I am seeking also.

I can really tell I have been hanging around here too long, because I can hardly get through those women's magazine article about BC anymore.  They are mostly so superficial that they are either incomprehensible or, I think, apt to be misunderstood by the general female public.  Let me rephrase that...glad I have hung around here long enough to know he real BC story (especially as it applies to me personally.)  Can't get that in your average article or news story.

elimar86861

I'm still looking for a chart but did find this (scroll down to "Ongoing Risk" section):

Risk of Recurrence in Early Breast Cancer

elimar86861

O.K. got one (but Barbe, please post if you have another because this is only distant recurrence.)  This originally from New England Journal of Medicine...

In comparison here with a more aggressive cancer (T-Neg.,) early stage ER+ does reach a mild peak around the second year out, with a very gradual decline over the 10 year period.  From this graph, we can see that if a T-Neg. gal can get past those terrible first 3-4 years to the eight year point, things look a little rosier.  The change is not so dramatic for the ER+ gal.  The risk for ER+ BC past 5 years is still a little lower than those first few years, but still looks like follow up, of some sort, is not a bad idea.  And keep doing those BSEs ladies!

Tomboy

Barbe, i was just wondering, because, like you, i seem to have developed lately, the problem of swollen nodes. they couldnt tell what they were by mammogram(one was in my breast) or by ultrasound on my ribcage. they are causing pain, and just a horrible itching sensation. they biopsied them, and said they were benign nodal tissue, conchordant with disease. well, Yeah!, but... why all of a sudden, this far out from treatment, and that is a question they cant or wont answer to my satisfaction. And now, just in the last couple of days, there seems to be a swollen one or two in my axilla as well. And, i temporarily dont have a B.S., as i am starting a grievance with her for other unbelievable reasons. So did they tell you why your nodes are swollen? thanks, and good to see your bright & shiny happy looking avatar!

Eph3_12

Yes, well, I have thought long & hard about the Onc issue.  Unbelievable as it sounds, my insurance doesn't cover my onc visits, even though they are the only oncology office between Eugene & Redding.  I have gotten some sort of waiver where they will cover it as out of network, but of course that does nothing until your deductible is met.  So for me, the cost of a yearly visit just doesn't pencil out.  I will do due diligence.  I lost my 2nd cousin at the 10 yr mark & she & I had practically identical cancers, although she was on Tamoxifen instead of Femara.  I will miss my doctor; I'm not kidding, I love her.  She was my rock through this whole mess as I had a non-functional nurse navigator & I quit the B.S. after a year & the rads dude after 6 months.  Plus she was my mom's onc thru her short battle with cancer (my doctor & I always start out our visits with a good cry about Mom.)  But after that visit in September, I'm outta there.  She said that it was sort of refreshing as she says most of her patients are afraid & fear if they quit going something will happen.  If something's gonna happen, it's gonna happen whether I see her once a year or not.  So I intend to par-tay after that visit!

elimar86861

kathec, I didn't key into what Barbe was writing (because she mentioned armpit and neck) but I have somewhat painful nodes too.  I had them for a few years before I got my Dx, and still have them now.  Mine are the ones in my chest near the breast bone.  Both sides, not just rads side.  The doctors tell me it is because they are right up against the hard surface of my ribs.  I think I have a few more in the sentinal node scar area too (not quite armpit.)  I usually do mention them when I go for exam, but nothing has been discovered.  I had a CT for other reasons and nothing in the chest was over 1cm.  I've not had anything else biopsied and hope it never comes down to getting that hateful procedure again.  For the time being, I am pretending they don't exist because I don't want to worry about them.  They don't cause trouble, but I feel them during BSE.

Tomboy

thanks, Elimar! i wish they weren't painful. but they DID do a biopsy on two of mine, a couple of weeks ago. and they said they were only 3mm apeice- about the size of half a lentil. i dont know how they could even biopsy something that small.

macatacmv

eph, happy day coming up. 5 year mark!!!!! Hang in there with a doc, tho. We just had someone in my local bc support group have recurrence at her 10 year mark. She had stopped seeing a MO and was telling everyone she had "had" cancer. Now she tells everyone to stay diligent and keep up with a MO. We just gotta live each day to the fullest!!! Enjoy the good times and get thru the not so good times. lol

Oh I am so glib today!!!

I had an awkward moment at the Y this morning. A woman was gushing over my new bathing suit. She loved the color and the fit. (I'm gonna brag here: size 12) She kept asking me where I got it. Wanted to look at the tag when I said I bought it online, I was still wearing it. The tag had no brand name. I finally had to say it was a mastectomy suit, with a pocket for my prosthetic. lol she piped down after that. But yes, if any one is thinking about it, I am feeling well enough to do water aerobics again. 

edited to add. ha ha on the topper, eli! A question with no answer!

barbe1958

e, that chart is full of crap, sorry! There is absolutely NO chance of ZERO recurrence! What a crock!! In fact, it is more a more widely noted fact that there is a 30% chance of recurrence! I, personally, say a 50% chance; you either recur or you don't. I see no need to follow a BS, PCP, MO, RO, etc. As long as ONE of your docs is watching your back that is enough. Also, if you don't have any issues, it doesn't really matter whether you have an appointment or not with an onc. Because WE know that if we sense something is wrong that we WILL be seen. Early stage with non-aggressive treatment has been shown to recur much more often than, say, stage III with the kitchen sink thrown at them! This has become a phenomenon over the past 5 years or so (or that's only because that's the time I've been watching it). I've seen way MORE early stages move on to stage IV than any stage III gals. Sorry to say....and they were having a much harder time being "heard" with their symptoms! Doctors have become much more receptive over the years as they are realizing that stage I is as "dangerous" as stage III.

As for my nodes, they are moving up my neck and a couple of years ago while the radiologist tried to biopsy one she was saying "Oh that one is wrapped around the jugular. Those two are meshed together" etc. But I still feel that if they were cancerous they would have grown much more significantly by now. Not to say there isn't a new "bad" node in the bunch... I also have some in my armpit that they don't like. But I did have micromets and a couple of nodes meshed together there as well. So who the heck knows. Sometimes I care and sometimes I don't. It's not in my hands to worry about, so I truly don't "worry", but I'm not wearing rose-coloured glasses....

Momine

Barbe, what you say above about early stage relapsing more than stage 3, is that your impression from reading here, or is it something that has actually been studied?

I ask because last time I ran the numbers, early stage with no nodes had about the same recurrence/death rate with NO treatment beyond surgery as my stage 3 cancer has WITH the kitchen sink thrown at it.

elimar86861

Barbe, I didn't take the chart to mean zero percent, or be absolute, but took it to mean a very low chance for triple negs. to have their cancer wait until 10 years to show up.  Never say never, but how likely is it that a more aggressive type of cancer (like TN) would show up at 10+ years?  Possible, but not very.

"My ER+ cancer is slow growing, so if is going to recur, it gets riskier after the 5 years."

In regard to that statement, this chart shows that although slow growing ER+ BC does have continued risk, it has less risk than the first 5-6 years.  I know you are warning ER+ ladies that the 5-year point is no golden time marker where the worry of recurrence can just stop and I agree.  The article which I linked to is more in line with what you are saying, and I am asking if you have a chart that shows that or if you can link to the study that shows the risk is greater after 5 years for ER+?  I would like to know my statistical risk as I move past the 5 year mark.

Tomboy

I dont know where it is now, but i just read last week online, i think it was an abstract(i read too many of them,possibly!) from the journal of oncology, pub-med, that actually, stage llb is the one most likely to reoccur, or metastisize. i will go and see if i can find it, and bring it back here. what my bs told me, being stage lllc, is that they were going to throw everything at it, with the intent of cure. i told her that i did not think it was curable.

Tomboy

....and so then she(i do not like her one bit, anymore) basically accused me of being depressed. Not! i enjoy the hell outta my life! no, what i had told her, was that because of all they had thrown at me, my quality of life sucked. because when you are stage four, it is more about maintaining the best quality of life, for as long as possible. and sometimes that will include no resection at all.

elimar86861

I am not really sure, but the docs probably do administer the chemo to Stage IV's with the "long haul" in mind; whereas in lower Stages (esp. III) sometimes intense treatment is given with the "then when it's done, you will bounce back" frame of mind.  Well, we all know not everybody bounces quite the same way.  Chemo, no matter what stage, can really devastate the QOL in some cases.  No one knows how hard the chemo is going to hit them either.

[So my chemo-numb feet have improved, maybe 5% over the last five mos.  I am finding it hard to believe that I can make it back 100%, but I hope more improvement will come over time.]

kathec,  Feel free to share the article.  I used to be more current in my reading.  I have slacked off in the last 1-2 years, and I imagine new info. about Stage prognosis and recurrence is coming out all the time.  That is why I am also really interested in the 5-10+ year recurrence info....because some of the data is just coming to light.

Dianarose

This was our first dance.

MinusTwo

Oh Dianarose - beautiful!!!  Thanks for sharing.

RE: Recurrence - I was DCIS stage 0 and had a double mastectomy, 4 serial nodes negative.  All 3 docs were confident they "got" everything.  They were very proactive and followed the standard protocol of care.  Within 2 years I had a recurrence with IDC& now stage 3.  There are so many variables - tumor size(s), grade, ER/PR and HER2 status....  I don't question any of the docs for the lack of chemo &/or rads the first time.  I bet the same way they did.  But now I'd like to know after 2 different chemo treatments, ALND surgery & radiation - how much time have I really bought myself?  Don't mean to be sarcastic, but "the answer my friend, is blowin' in the wind.."  (and we should all be able to sing that one).  There are lots of charts but it seems to me that most of it is "best guess" - so we just move forward and try to put it behind us.  I won't neglect check-ups, but frankly I'm looking forward to ending treatment again and going somewhere to sit by moving water & heal my spirit.  That can be ocean, lake, river, etc. - but a sprinkler does NOT count.

Eph3_12

DianaRose-  WooHoo!  More please, but that's probably one of the best!

MinusTwo- I like, "going somewhere to sit by moving water & heal my spirit"  ... and most def, sprinklers don't count.

Valjean

Dianarose ~ what a lovely picture!! I am so very happy for you! 

My different take on sprinklers is when my grandchildren are running through them. That renews & heals my spirit. 

macatacmv

diana, that looks more like a smooch to me, but call it a dance if ya want! It looks like your day was magical! 

Tomboy

....but i even enjoy watering my plants, too! i have been using the bath water,only very little simple organic soap, and helps to keep the bugs off. i love the big bodies of water, tho-  definately healing.

Momine

Diana, what a beautiful picture. Thank you so much for posting.

NativeMainer

Dianarose--BEAUTIFUL!So happy for you!

elimar86861

Dianarose,  I agree with mac...that's quite a lip lock, er, I mean dance.  So nice of you to share with us.

luvmygoats

Dianarose - Thank you for sharing your beautiful picture. May you and Mr. B. be very happy.

Jeannie57

Dianarose, what a beautiful bride! I am SO happy for you. It put a huge smile on my face.

macatacmv

I went to see my MO today. I got to tell her and everyone there how much better I am feeling. We had a good chat, I got some answers and she was non committal about some other stuff. About how long I'd be on the tamoxifen, we'll see. More studies are coming in, so we will revisit this in a few years. She was like amazed I was asking questions. I explained that this is how I am, the person she's been treating for 2 years was not functioning to the best of her ability. lol

Then she did the exam. She described the right as crunchy (probably scar tissue) and the left as lumpy. Way to build up my confidence. Then she said see you in 6 months. All in all a good appt.