Bottle 'o Tamoxifen

Ladies, I have had lots of the same experiences with the docs just not listening to MY goals, MY values, what I want! I ran across a book by a Dr. Geffen "Journey Through Cancer" that was just excellent! He is an integrative oncologist - he does NOT advocate non-traditional care, but insists that cancer patients have a right to be heard and understood by their oncologists and surgeons.  I think it should be mandatory reading for every cancer surgeon, MO, and RO!

Yes, I still have a lot of anger about BC, my BS (a woman who is highly regarded by many, but whose philosophy is "to find and treat breast cancer" rather than to "treat women with breast cancer"), and the system here in general.  My MO was almost 2 hours delayed for my first visit with her, which really put me off, but I have discovered that she takes as much time with each patient as needed, and she ultimately has given me what I needed.  Sometimes it is only 15 mintues, sometimes it has been an hour, so I have been much more relaxed and patient with her because I know that she is giving some other woman the attention she needs when the MO is running late.  And at least she listens!!

My cancer did not show up on mammogram - had essentially normal ones for 16 years - found a lump last summer myself - even then the mammogram was questionable (mass was over 3 cm!), but the ultrasound was obviously abnormal.  MRI was the next study.  So now my question is: why even bother with mammogram if it isn't going to show up there? Has anyone else with dense breast tissue been told they would need MRI in addition to or instead of mammogram?  I am coming up on my 6-month follow-up with the BS and would just as soon skip it and follow up with the MO only.

Tonight I am going out with friends for a REAL Italian dinner - the virtual food here has been so good that I may have forgotten what the real stuff tasts like!   Best to all of you for a night without insomnia and few hot flashes!

Enjoy your night out and the REAL Italian Linda! Yum Hopefully it's nicer where you are. It's rainy, overcast and dreary all day here.

Yes - this comes up on threads all the time about how unreliable mammograms are for many women.  And yes, I'm mad about it. Had I known , I would have insisted on USs and an MRI at least every 2 years.  My mammo was so-called "clean" three months before diagnosis and I didn't have dense breasts - just "occult" to screening as they put it.  I even researched this & wrote a suggestion to moderators to publicize more to women.  And East Coast is right - the doctors are the ones who should be telling women this.  Anyway, that's why I chose left mastec in Sept and a right prophy in couple of weeks.  I simply don't trust the screenings anymore.  Here is part of what I wrote them.

Approx. 8-10% mammogram results are false negatives (missed cancers).  At first, that may not sound like a lot, but according to the BC Surveillance Consortium, 7,869,022 mammos were performed between 1996 and 2008 (13 years).  Eight percent of false negatives would equate to 48,425 missed cancer cases each year on average.  That's HUGE.  And in 1-3% cases, there were false negatives for both mammograms and ultrasounds.  34% of false negative mammograms are due to dense breasts. If women with dense breasts knew this, they could demand an MRI and many could have found cancers while still in situ.

Jo - you and I seem to be living parrallel lives..on west and east coast (it is your mom who is from NFLD, right?)...lobster works for both sides of North America...as for breast cancer....still parrallel...I went stright to 'lumpectomy!' when the surgeon started talking. I essentially said "it is 1cm...these are double D's....take what you need, take a bit more and leave the rest. You can fix the other side and even me up a year from now" and the surgeon said that with my prognosis, there was statistically no difference between a lumpectomy and a masectomy...time will tell. For now, I have no regrets about my decision. Have met a numer of women recently who went in the exact opposite direction..."TAKE 'EM"...no decision is the wrong one...we are doing what we need to do at the moment, hmm?

Exodus- I know what you mean about the mirror...while I am ok looking at myself naked in the mirror, but I cannot look at myself in the gym mirror...think it is too much of a difference from what I think I should look like right now....the trainer says ' oh you have lost weight...',,,and today I had evidence of it with the loops on my belt...but my mind does not believe it...

Tink- the scars will heal...I had my appendix out at 15 and don't even notice it...the radiation actually helped heal the scars under my arm and on my breast...I still plan on getting a tattoo but am waiting to meet the radiologist on the 22nd to see if a tattoo on that side will affect anything..not sure why it would but I am feeling especially paranoid..

Sandee - Mom was from NFLD.  Believe or not, she hated shellfish.  Loved cod though.

There was not way in h@ll I was going to let my surgeon take any more of my breast than he needed to. I am pretty even when dressed but undressed - well that is a different matter.

I too am trying to live my life to the fullest.  I have a new appreciation for life and going take advantage of the fact I am still here living and breathing.  I can deal with having to take a pill for the next 5 years.   

Roberta- Excellent...that you are running the show I mean!...they should be doing everything in their power to find and eradicate any potential cencer cells...hell, must be cheaper fo rthem i the long run to help us get rid of it early, right?  Good luck!

Jo - Cod ....yep....your mom is a newfie!

n3ypb - My tumor was missed by mammogram also, and it was over 7 cm.... I am coming up on the time of my annual mammo and have basically been told to stop whining about wanting more than a mammo, that it's NOT going to happen....  WTH?  My RO said, and I quote.... "we cannot know that any new cancer is going to be of the same radiographic characteristics as your first" (and therefore undetectable on mammo) and my response was, and you don't know that it won't be the same!  She got red, and still refused that further diagnostic studies would be necessary. 

D4hope - I am having pain primarily in my right hip, but infrequently in my left hip and right femur (have been on tamox since november).  I see onc on Tuesday and am not sure what she is going to do about it (it has been present since the beg of February)... but, I will let you know!! 

Leanna9 - I have a question for you.  Why is your RO scheduling your mammos and not your onc?  Once my rads were finished, I was him one week later for a "skin check" and then I was through with him.  That is fine with me since he is such a moron.  My onc does all the testing and follow ups.  After some minor breast pain issues, I am going to see my BS in 6 months and I can't see having to see him again after that.

I like the idea of having one person manage all my care.  To me it is less confusing. 

D4Hope - I had pains in my toes and feet from the Tamoxifen.  My onc started me on Lyrica and that has helped tremendously with the pains and has given me so good sleep.  I take 75 mg at night.  He told me I could work up to 600mg if I needed to.  You may want to ask about Lyrica. 

WHAAAATT?? See you in 2 years?!?! That's crazy. Oncologist are hematologist that's why THEY have to check your bloodwork every three months. Its their specialty. That's crazy..I would find a onc that wanted to see me. I will see my onc every 3 months for 2 years then every 4 months then every 5 months then 6 months if thats ok after 5 years once a year. Thats why its important to like your MO they are stuck wtih you for life

Diane

Sandeeonherown, wow that is crazy. Mine is similiar to DiDel's. I will see mine every 3 months for the first two years (so far, it has been more often than that), then every 6 months for 3 years, then once a year after that. I agree, find an Onc that wants to see you and keep on top of your health!

D4Hope, I had severe pains in both upper legs/femurs after being on tamoxifen for a couple of weeks.  It continued to be so severe that I am currently "on holiday" and it took nearly 4 weeks to get back to pain-free so that I could begin building up strength again. MO says we can start at lower dose when/if I decide to resume, or she may consider switching to an AI (which doesn't sound all that much better in the SE department - but again, everyone reacts differently).  I am very conflicted about resuming as I don't ever want to feel that bad again, but also would like the benefits of tamoxifen to reduce recurrence risk. From what I've seen on this thread, some women do better starting with lower dose, so if you don't want to add more drugs for pain, you  might check with your onc to see if lowering the dose for a while would be reasonable until you get used to it.  And I know that Jo has had great relief from Lyrica, so that might also be a reasonable request.

Thanks for all the responses about the mammogram vs. MRI and timing of follow-up.  Seems like it depends a lot on the onc team "standard of care" and other beliefs.

BTW, dinner out with friends was just the thing I needed for sagging spirits, and the glass of wine that is highly discouraged by my MO was absolutely wonderful!   

Its amzing how each MO has a different approach... I see mine only every 6 months no scans not sure about blood work yet though... had my primary care doc do that I didnt want to wait until I go back in JUne

SANDEE..I know your right about the scars, its really more about what they represent rather then how they look i think, you know what I mean.? I chose reconstruction so I knew that was part of the aftermath I have one incision that goes from hip to hip and I knew that going in, but nothing could of prepared me for the emotional aspect of it... just a reminder... I guess I can call them battle scars now huh?

ROBERTA good luck to you with your MRI

D4HOPE...I also get pains in my legs comes and goes started recently and I realy think its from the TAM.

Yea - I'm wondering why there is not a uniform way of testing after tx. My onc will not do MRI's unless something shows on Mammo and US. Says there are to many false positives associated with MRI's and he follows the ACS guidelines. But I wonder, if I should insist on an MRI. I'm not one to go to the doctor for any little thing. My father was a doctor and I was a respiratory therapist so I pretty much take care of myself -- that maybe why I waited three months before I called my GP about the lump I found.

Tink - I am not much of a water drinker but will these days as long as it is ice water.  Don't ask me why it has to have ice.  I would rather drink ice tea sweeted with Equal but the sweetner keeps me awake at night so I switch to water right after dinner.

Of course, then I am up several times a night to go to the bathroom.   

What doesn't help me either is that I also have to take a diuretic for my high blood pressure.  I take that pill in the morning but it lasts all day and all night long.  Bummer for me.

Okay!  What do you want for dinner - Tink?