THEY HAVE NO IDEA!!

I saw my BS once after my Mast.  He explained my biopsy report and checked my incisions.  He told me I never had to go back unless I wanted to see him.  Haven't felt the need and I haven't been back.  I don't know why you would have to go back to your BS once you are healed.  If someone has their appendix out, they don't keep going back to see the surgeon.  We have other docs to check us for cancer.

karenlen...I'm just the opposite. I adore my BS and will do whatever he says for as long as he wants to take charge. I don't have the same faith in my med onc (MO) and haven't met the radiation onc (RO) yet, but both were recommended by the BS so I'm working with them.  Am due for follow-up with BS on September 30 when I'll be done with chemo and will have begun radiation. My BS just does breast surgery and I trust that he'll see, feel, scan all over time and keep watch on any possible recurrence in that area. It's the other body parts I worry about with my hormone negative receptor status. Plus after the radiation is over I have to have my ovaries yanked. Am planning to have uterus taken too because it will be one less thing to worry about. But that's yet another doc to deal with...another surgeon to add to the mix. I think that this is just my year of living dangerously with cancer and seeing physicians galore. Like Julia Roberts 'no carb left behind' diet in Eat,Pray,Love, this will be my 'no medical professional left behind' phase. Bring 'em on! If this cancer saga lasts more than the year (have to finish the Herceptin) then I'll have to add a psychiatrist to the list. I want my life back, too!  Would love to enter a 'NO MD Zone' for awhile. Except I'll keep my BS forever. He's that good. (And in answer to your question, I had a partial mastectomy, ended up with 'widely' clear margins and no nodes involved. Just an aggressive and invasive tumor that is prone to mets without aggressive chemo and radiation).

.

I guess because I didn't have a BS, I had a thoracic surgeon who happens to do many, many mx surgeries in conjunction with the PS, he just turns it all over to the PS.

I see my oncologist and I see the radiologist who reads my mammograms.  The radiologist usually calls me into the room to see the scans if he has any concerns. This same radiologist does my sonograms and if necessary, the biopsies.  I love my radiologist.

somanywomen:  Thank you so much for starting this thread.  In vino veritas.

And to everyone: yes, yes, and yes.  

This website has provided me with information, humor, consolation, and solace.

Thank you very much, BC.org sisters.

For me, this experience began with hiding out, sparked into speaking up, grew into helping others.  It's a physical, emotional, mental, and spiritual roller coaster.  BC reveals a lot. You learn about yourself.  You learn about others.    

It changes everything.

I have friends who've told me to stay off the internet.  To just trust the team and leave it at that.  I can't.  I need to learn about the disease; I need to learn how to deal with it from the experiences of others.,,.

This month, I've had the great healing opportunity of being able to help two women just starting down this path.  My advice in a nutshell:  trust your own intuition (the voice in your head), ask questions, demand answers, learn from breastcancer.org, and everything you feel is normal.  

Those around us love us but are limited by experience, fear, and denial.  Unless they're cruel or outright dismissive, let it go.  They have no idea and I hope they never have. 

Thank you all.  And God bless us all.

mbtlcsw01 and raeinnz:  My father in law has been using a cane and has a lot of pain since a 2006 tendon injury and neuropathy caused by a short course of levaquin.  Cipro is another drug associated with these types of serious, long lasting, and, for many,irreversible side effects and others. If you google levaquin and tendonitis, you'll find lots of information and reports from many who've been injured by "flouroquinolones"--especially levaquin and cipro. 

In July 2008, the FDA issued a "black box warning" for these two drugs and others in the class "flouroquinolones."  Here's the address:  http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm126085.htm  

Definitely worth reading.  Take care.

PS  Can anyone help me learn how to properly post a link?  Thanks.

I work in healthcare with many of my friends being docs.  They always are willing to allow me to ask questions and I'm religious about knowing about side effects before I take anything.  I'm very allergic to many drugs--including taxotere which almost killed me twice.  There is another drug very similar to levaquin called avelox,  I break out in hives with it and my throat closed up.  I've learned that medicine is an art, not a science.  Each of our bodies is a different chemistry set and what may work for one will not work for another.  I've added vitamin d for the last 3 months and have NO pain any longer anywhere.  It is amazing. 

somanywomen - you're welcome!  Maybe we will meet if you make it over here.  I think it is wonderful that your son wants to travel with you.  I have twin girls in their second year of university and another daughter in her last year of high school.  I find they are more interested in going places with me and having a relationship with me in general now than when they were 14 - 17 y/o when the friends were SO important.

redsoxfan - thanks for the link about fluroquinolenes - interesting indeed.  I will be very cautious if my dr suggests those drugs.

Mary - I agree with you about everyone's body reacting differently to drugs.  Although I haven't had life threatening reactions to any drugs yet, fingers crossed I won't, I have found several drugs I do not tolerate at all and all of them are ones that are generally 'well tolerated'.  The first BP medication I was given - Inhibase - gave me horrendous heart burn the first time I took it and I had never had heartburn before even when I was pregnant with twins!  I mentioned it to my pharmacist and doctor and they both said it was 'well tolerated by 99.9% of people' and that maybe I was drinking too much coffee or eating too much citrus or both - what? The dr gave me another drug Losec to settle it but it didn't work.  I stopped taking it after two weeks of agony and in 2 days the heartburn had gone.  From that experience I learned I have to listen to my body and trust what it is saying to me.  I now research medications before I swallow them and quickly stop taking them if I notice any reaction at all.

bon - yes, vitamins are necessary but too much can be dangerous.  I had a friend who got Vitamin A poisoning from eating too many carrots (she was on a diet and was munching through lots of carrots everyday) - her skin went yellowy and flakey and she started having terrible headaches.   Drs thought she had some sort of liver damage but eventually worked out what it was.  She came right after a couple of weeks too.

samsue - Glad you enjoyed our beautiful country - I hope you were made welcome.  Yes, there are some 'interesting' roads in NZ especially in the mountainous areas.  When we toured the SI when I was young my Mum refused to go come back over the Arthurs Pass road (very edgy, winding and steep and metal road in those days) and waited for a train to come through later in the day.  I can still see my Dad's face when she wouldn't get in the car - he was purple with rage and my brother and I (who had no choice but to get in the car with him) had the trip from hell over that road because he was so furious!

I have not been tested for Vitamin D levels - we have high sunshine hours in general so I guess it is a rare thing for someone to be low on vitamin D. Maybe it would be done if my bone density scan had shown a problem though. 

Mary - interesting.  Do you think modern day lifestyle choices have an effect ie not actually going out in the sun much despite living in a sunny place, or covering up or using sunscreen all the time or not eating fish or that some people just have a natural deficiency?  Here in NZ we are all (from age 1 yr) advised to 'Slip on a shirt, slop on sunscreen and Slap on a hat' before going out in the sun so maybe we will become increasingly deficient as well.  Sunshine is a Catch 22 for us as our sun is so fierce - if we get too much we are at risk of melanoma and if we get too little we could be at risk of brittle bones. 

firni - As part of our weather forecast in summer, there is a UV index which tells us the expected intensity of the ultraviolet radiaton.  It goes from 1 - 10+ and at 9 we are advised that we will burn in less than 15 minutes and to wear a hat and sunscreen if we are outside and to stay inside between 10am and 4pm.  At 10 we are advised to stay inside all day. The index is more often than not 10 or over in summer and regularly goes to 12 so we could burn in about 10 mins.  We we really do need to take care not to get burnt down here but do we all do it - no! - heaps of people still get burnt.  If any of you are coming to NZ for a summer holiday remember to Slip, slop and slap!

raeinnz

Yes it was Arthur's pass! And, I don't blame you mum because although beautiful, it was also quite a trip.... especially driving on the "wrong side of the road" LOL

I also live in FL and have most of my life. You would have thought my D levels would have been higher. I had been taking Cal w/D in it when the bt was taken so even with that it was low. My DD had hers checked since I found out it was really important and hers was low like mine. She's lived all her life here, so there isn't a guarantee the sun will give you enough.

Boy does this thread ever show that it is not a 'one size fits all' world in treatment.  We started with family that doesn't know what to say and friends who just have no idea and now the medical community can't even understand us...hummm, I think every treatment package should include a trip to some island paradise for two weeks for a complete pampering staffed with people that get it - totally!

I sit out in the sun once a week for about 30 minutes with no sunscreen.  I don't burn easily.  I know for the year or so after dx and during tx I never felt like being outside much, so I got little to no sun.  I work inside all day, so I'm not out much during the direct heat.  We too, in Tampa, have very high UV ratings. 

Somanywomen, my DH is toleratant of me being on this site.  He reflected to me recently that he  does have some idea about how if feels.  His father died of a heart attack @ 53 years old.  My husband, due to a genetic factor, had one when he was 49.  He is great now, but has had to be hospitalized several times over the years with angina.  He said, every different twinge, etc, is a constant reminder that this is not over for him and he never knows when it might flare up again.

somanywomen - Arthur's Pass is a mountain pass road so is challenging.  When my Mum had her 'moment' (about 40 years ago) the road was metal and only really one lane wide so it was pretty hairy to travel it especially if you met another vehicle.  It has been upgraded heaps since then though because tourist buses started to use it regularly to get to the West Coast. Altough it is still steep, windey and edgy in places it is a safe road now and carries lots of traffic.  Big buses still have to go on the wrong side of the road sometimes though to get around sharp corners. There will be no 'Fear Factor' moments I'm sure.

I know what you mean about your DH wanting 'the old me to come back'. Mine has been so careful of me but I used to be upbeat, into everything and doing something all the time and now I do what I have to and would rather watch tv or be on the computer even when he suggests doing something and I think it worries him.  I think a lot if it is the Femara fatigue with some PTSD mixed up in there and I am looking forward to April 2014 when I have done my 5 years.

I am lucky that I have a 'techno' loving DH so I have my own PC and we have a home wireless network so I can spend as much time as I want on the boards - I guess you might have noticed that!

Just spent the last hour picking up oranges and juicing most of them.  They are pretty much ripe and have fallen off in the recent storm - nothing nicer than home squeezed orange juice.  Orange chicken tonight for dinner too - yum!

Gotta go to work - Bye ladies