Bottle o Tamoxifen

Well i just got back from the PS.  Had a 2 hour appt with being measured and pinched and thorough history and physical.  After all that the news is not what I wanted to hear.  He said my radiated breast is severely damaged and that implants are not an option at all for me.  He said his recommendation is a DIEP but i don't have enough tummy fat to do that either.  He said that 5 months out I should not still have as much color in my radiated skin as I do. I also still have lots of edema.  My left breast is still bigger than my right and after 2 lumpectomies taking 5.5cmX2cmX2cm each time and I am not very big to begin with so I should be substantially smaller.  He said the same thing the pain Dr said that since I had nerve damage in my left hand from my car wreck in 1995 when I broke my neck I should never have had radiation on my left side that all my nerves were way to vulnerable.  He also could feel all the scar tissue that I have in my breast.  So the bottom line is I have to gain weight in order to have enough tummy tissue to do the reconstruction.  He feels that I should have a double MX and not a uni as my BS was wanting to do.  But I have to remind myself that she is very conservative.  He felt that with my history of ADH and my age that I have a higher chance of getting a new BC in the future and he feels that I should do a double to try to keep my odds down.  He did not feel he would have trouble convincing the insurance company that this is what we need to do.  He also said that with my skin being so damaged that he wants to do the MX to make sure about all the blood vessels etc.  He does not normally do the MX but he said on the hard cases he does not like the general surgeons to do them he wants to be the only one  touching all my blood vessels so will do both the MX and reconstruction with one of the other PS working with him.  He also feels we need to wait a little longer and let my skin continue to heal.  So the plan is go back in Sept to see how my radiated tissue is coming along.  Because of my work schedule Jan-mid march is out for surgery, so the plan is to do the surgery the end of March or beginning of April if I can gain enough weight.  I stopped by Whole Foods after the appt and picked up a bunch a single serving protein mixes that I can try out to see what I like.  He said I need to eat lots of protein but he still wants me to work out and keep my core stomach muscles in shape.   And to think the RO's report makes it sound like I breezed right through radiation. ugggggggggghhhhhhhhhh  The PS said the RO's never give patients all the information of all the bad SE's of radiation.  He said we probably give too much information but I want all my patients to know what can happen in case they are one of the small % that have problems.  Why are RO's not like that I do not understand.

So I was in the dumps and called DH and cried.  I honestly did not think it would be that bad.  I am very thankful to be alive and to even have what little options I do have but at the same time I am pissed.  DH being so sweet wanted to know if I wanted to get another opinion but these guys are one of the best in the Country and people fly in from all over to use them.  The only place I can think of to get another opinion is the Dr's in New Orleans that are so good.  I'll have to sleep on all of thatl  Thank you all for being there for me and for listening.

Sherry - I am so sorry you did not get the news you wanted and that you now have fewer options.  I hate the fact that ROs do not give more information in the beginning.  I think all they do is look at the dollars signs and to heck with the patient.  From what you said, it appears that your RO disregarded the fact that you should not have had radiation due to your car accident.  So, if I am reading right you now have to wait until next summer?  That is so wrong - you have had enough problems - it is time you catch a break.  I know rads were a nightmare for you and now you will have a permanent reminder of them.  I pray things will work out for you.  Sending big hugs to you dear friend.  

I saw my pain specialist today and I asked him how long I would need to be on the Elavil for the nerve damage and he said "The rest of your life."  That is not encouraging but he said the damage is permanent and will always have to be treated.  He has agreed to let my onc take over and manage the problem.  I see my onc on Monday for my 4 month follow up and will need refills as I have 13 days of medicine left.  Did your pain specialist say the same thing or have you asked?  It would be interesting to hear what yours has to say.  

Sandee..thanks!!! we are actually driving to the beach so my DH will have to stop oh my!!! that should be interesting he hates to stop... traveling by car with him is  an adventure all by itself! lol

Sherri... I am so sorry the appt didnt go as hoped. sending you lots of hugs!!!!! it is so frustrating all that we have to go through and contend with. So much is taken away from us and all we want is to get some of it back.. but you know what??? we will!!! hang on sweetie we are all with you!!!!  If you do end up with the DIEP and have questions let me know I had that done

Sunshine... glad you got your approval!!!!

Jo/June/Alicia.Shari/surfette and all my other Tammy ladies... hugs!!!!!!!!!!!!!!!!

Sherry - I wish all I had to worry about was the breast pain.  There are other options like a BMX down the road but I also had the pain in the toes and I really need those - LOL!  Glad to hear that our pain doctors are on the same page.  That makes me feel better about this.  We all know that doctors can have varying opinions and totally different ways of doing things.  At least the amitriptyline is not addictive - I like the fact it helps me sleep much better.

Sherry - I am a flip flop girl and they would be hard to wear without the little piggies.  LOL!

Sandee - My toes finally don't hurt anymore since I started the amitriptyline.  What pisses me off is that the breast & toe pains are nerve damage from rads.  It took 5 months for someone to figure it out.  My RO is such a friggin moron he would not admit this could happen.

Something interesting I found out about my RO the other day - he used to be a professor and teach radiation oncology - the person that told me this has known him for years.  My response was maybe he should stick with teaching and maybe go take some courses on patient care and sensitivity.  He has the bedside manner of a piss ant.  Just because one can teach does not mean he/she should be in direct patient care.  No offense to any teachers out there - I think that is one of the hardest jobs out there. 

Sherry Im so sorry to hear about your meeting today.  Its got to be hard to hearing the one thing that you want to be taken care of, and there is so much more you have to do.  Atleast it sounds like your PS has your best intrest in all this. 

Jo Im sorry to about your news.  I didnt have rads done and I dont know the kind of pain you are dealing with.  What gets me is how you tell someone that you have these pains, they dont listen.  Some brush it off as shes being whiney or whimpy.  Well let them walk in the shoe of a BC gal and then they could see whats going on.  Im hoping that itll all work out.  Ill have a chat with my sissy, about this.  She had a BMX and Rads on the one breast. She might have so tips to help.

Thanks Paula yes it was disappointing but at least the PS has a plan.  It will take me awhile to get there but I know it is for the best.  I spoke to someone that I met here on BCO that also used these doctors after she already had problems with implants from another PS.  She said they are always honest and you know exactly what is to come and what can happen.  She said they fixed her nerve problems from rads as well.  She said when they got in there her nerves where all matted together. She had her implants removed and did a DIEP as well and she is much happier.  The thing that scares me the most about my nerve damage is that the PS said it may not be in my breast.  He said that since I had nerve damage from my spine that goes through my breast and down my arm from my car wreck in 1995 in which I broke my neck he said the damage may be in those nerves and it will be very difficult if at all to give me relief and he will not know until he does the surgery.  He said the way nerves work my pain is in the breast but the damaged nerves may not be in the breast.  But I do trust the PS I have done alot of asking around about the group and this doctor and I cannot find anything bad about them.  It is all praises about them being one of the best in the country.  The PS did make me feel comfortable but wanted me to understand exactly what we had to deal with.  But he did say he does not advocate radiation on breast tissue unless you absolutely have to and there are times you do not have a choice

Sherry, I'm sorry about this situation you are in now, so frustrating to hear, cannot imagine how it feels to live it. But I am glad to hear you have a great PS, sounds honest to me.  Jo I'm sorry you've had so many SEs too.  We take the info we have and try to make the best decision we can, but it's hard to know all of this when we are first diagnosed.  It's trying to drink from a fire hydrant.  It stinks. PU

They forecast 110 for today, summer is finally here in a big way today.  So sending lotsa "hot" hugs to all my sisters today.  May we all find something to smile about, even if only for just a little while. 

Hi, guys, good news! The enlarged liver and high amylase levels are nothing but a boring buncha gallstones! Woo hoo! Lived through intense scanxiety, practically started to cry on the table, but was sane enough to hear the all clear. Once again i am reminded that in every experience in life there is what to be grateful for. Thanks for putting up with my nerves.



Jo, i like how you vent. Your RO sounds like he has met his match. A lot of these docs would be better off staying away from people.



SherryC, sorry about your mtg w the PS. Sounds like he is caring. I am looking into a method of reconstruction that uses your own fat and a special bra that builds up your own tissue over many months (google BRAVA breast reconstruction.) Pluses and minuses but i know that its a good alternative for red damaged skin. Very noninvasive but a long process. If you want to talk more we can PM so we dont bore everyone to death. I am not a candidate for implants or a DIEP so its taking me a while to research other methods but they do seem to exist. I will keep you company in your wait.

All the best, shari

greenarch- thank goodness for boring things like gall stones and tendonitis....it is sooo hard to keep things in perspective an dnot jump to the 'more cancer or cancer related' stuff now....gall stone surgery is zip in and out now. I felt the same way when the physiotherapist told me Monday that it was tendonitis and not lymphodema....right after geting the all clear on the mammogram....now to get my lower back and ankle back in gear ....RAN on the treadmill today in cariac rehab class....have not done that for a long time without feeling it in the chest so i guess that blockage has been happening for awhile!

Jo- glad the meds are helping the toe pain...but bummer about the arrogant eacher/doctor...sounds like the first surgeon I met...bedside manner of a bedbug!...and you are right....some teachers can't do and some (many?) phd's can't teach....both require training and personality. You have every right to be hostile....sounds like the man should be in a cubicle somewhere not with patients!

Sherry- I will remind you of the 24 hour rule whenever you need a reminder....it has been a goddess-send for sure.Waiting is horrendous but you are getting informationand your doc has your health in mind so that is a blessing regardless of how  it might feel at the moment....what can you do to distract yourself (other than the vacation of course!) in the meantime?

heartandsoul- THANKS!

phxsunshine.....110???degrees???with sun???all we have seen in Halifax it rain rain rain....hard to walk to school in the rain....well,not hard to walk but hard to motivate myself, let's be honest!

I am with you Tink!!! lots of room for more:)

Tink - I think those pockets of yours will be pretty full - mind if I catch a ride on your shoulder?  One way or another, I will be there with you.

What time do we need to take off?  I don't want to be late.