Starting Chemo in JAN 2007

Hi all,

I saw my oncologist yesterday and we do not see eye to eye. It might be time to find another onco in April, when I finish my herceptin. She became defensive when I questioned her about my future treatment plan. On the Cape, all the oncologists a general oncologists, and therefore cannot know everything and all the latest news on all the cancers. In Boston, there are Breast oncologists who just see BC patients. It made no sense going to Boston for all my tx's, but after April I will switch.

My oncologist thinks that "I do not have breast cancer anymore." As a result, I do not need to have any further tests ever- unless "my body" tells me differently. WHAT!!!!



She also called me anxious because am asking too many questions. I am post menopausal and all studies show that AI's work better on post menopausal women. I do however have osteoporosis, but only in the beginning stages. She has me on Tamoxifen and will not entertain the idea of me switching to Arimidex. Arimidex can cause bone damage. My 2nd opinion oncologist at Dana Farber told me that I could take AI's if my osteoporosis were light to moderate- which it is. My onco refuses to switch me.



Since she thinks that I do not have bc anymore, she believes that there is a much larger risk that I could "die" from s/e's of fracturing my bones after the age of 75. When I cited studies that stated Foxamax, calcium, and Vitamin D would prevent bones from further damage while on Arimidex, she became very defensive and told me that those studies are done by the drug company and therefore hold no credence. I made hard copies of these studies, and they are NOT from the drug companies. I also told her that I read that the bone damage (if any) from Arimidex actually decreased once you are off AI's- way before I reach 75. She then told me that that might not be true. She was very stubborn.



She also told me that since I am anxious, I should consider having my ovaries removed if I am so concerned about getting cancer. I told me I saw a geneticist in Boston who told me my chances of having the BRCA gene was less than 2% . That was derived from my family history- no bc or ovarian, colon or pancreatic cancer and that fact that I was over 50 when I was diagnosed diminished my chances greatly. The geneticist also told me that they would never advise ovary removal in my case. Once again, she disagreed with the Geneticist and told me she knew several examples patients with similar histories as mine who got ovarian cancer after BC. I guess she means because I am Jewish. Thanks, doc- that helped my anxiety.



I dragged my dh with me because I knew it could get ugly. Beware, if they prescribe ativan, we could be diagnosed as anxious. It reminds me of an old "Seinfeld" episode when Elaine was "labeled' after she saw the doctor and all her records were tarnished and followed her when she tried to switch doctors.



How can she tell me 'I do not have breast cancer" anymore???? I never had a pet scan- and if I stay with her, I never will have any other tests unless I fake it. I also think she was out of line overstepping the Geneticist.



I think she is not used to confrontation. The population on the Cape is older, and maybe patients without a computer do not question their doctors. She repeatedly has told me I am a baby- meaning very young and perhaps she truly does not know how to deal with an "informed" patient. It is easier to label me as anxious. I feel strongly that because she is so defensive, she is not listening to me and my situation. In March, I plan to see a highly recommended endocrinologist who specializes in Osteoporosis and who also treats many cancer patients with Osteoporosis to hear his opinion. If he feels if would be okay for me to be on Arimidex and if my 2nd opinion oncologist at Dana Farber agrees, I will switch to her.



Sorry for this being so long winded, but I just had to vent.



Viddie

Oh, Viddie, my onco. is from Dana Farber too...  but a young guy, say 48-50 tops.  He is of the same exact school of thought...don't test or look for more BC unless you present symptoms.  Research says that if you find mets 2 mos later because your arm feels like it's gonna fall off, ultimately you won't live any longer because you delayed treating those mets by 2 mos.  The DH and and I have had a helluva time wrapping our brains around that concept.  My onco. said knowing too soon by "looking for more cancer" diminishes our quality of life.  At this current point, I'm OK with it.  Esp. after this heart stuff.  I'd given a lot of thought to some of you triple neg. girls and how I know you struggle w/"I only have chemo as a weapon".  But....  if you had herceptin, you could end up like me, w/a heart issue.  It's all such a crapshoot, I swear! 

Viddie, glad you spoke up too.  The older dr's are totally not used to being questioned.  I had a yellow legal pad in my bad and I think my dr's thought they were taking finals in my room this week!  However, I did "bust" a young female dr. for trying to switch me to Zoloft from Effexor...  I told her no, no, shouldn't do that.  She misunderstood my onco, gave me Zoloft and I caught the error.  There was another instance of something similar, but I forget...boy, do I have some mega amnesia from all of this.  Forgive me if I am repeating myself in my posts.

The DH recapped my ICU experience for me as I recall zero.  I guess I was in the OR at 7:30 and he wasn't approached by doctors until 2:30 and was brought to a private room where he was told they weren't sure my heart would make it.  OY!  They were going to wait until Mon. to do a cardiac cath because they didn't think I'd survive it right then, but I guess I then had major problems again and they had no choice but to do it stat.  Paul said my face was totally void of color, I had tubes out my nose, a Shwanz (?) line coming out of my neck, cardiac cath. out of leg, etc.  Said I looked like it was curtains.  He is in such a good place right now, relieved that things didn't turn out like they looked like they would.

 OK....steroid woman will now return to bed! 

Argh Viddie what a confrontation.  I agree with your analysis that it is time for a new Onc….if for no other reason than you deserve to be treated and SPOKEN to with respect.  I think the onc has no business telling you that you do not have BC anymore….I think that the standard convention is to declare “cure” after 5 years, but that the reality of it is that it is chronic disease.  My onc is also very anti-scan, for the same reasons as Tina’s…and I am actually OK with that.  I am not terribly interested in spending the rest of my life looking for more cancer.  Viddie, vent away…that is totally inexcusable and you deserve better.

Tina that ICU experience sounds absolutely dreadful.  Poor Paul, having to have the dreaded “talk” from a Dr like that….he must be almost euphoric as well having gone from the depths of despair and facing the loss of (gulp) beloved Tina all the way to shopping at the mall one week later!  What a long strange trip.

Good morning Amera!!!

Debbie that really sounds like an awesome day!

Hi, Checking in. I think my tummy virus is gone, feeling better. But...I went to the oncologist's yesterday and I have some lymphedema.  in my right arm. I wore my sleeve for the last 24 hours and woke up this am with my hand swollen again. It scares the bejibbies out of me because it's not reversible. I'm right handed too. All this time I thought the numbness was neuropathy. but Dr. said I would have it in all extremites, not just one. Again Caya OY! OY! OY!

Also they want a repeat pap smear in 3 months. If atypical cells are there again, I may have to have the hystro. I would then be an empty shell. There were no signs of HPV, and they said 90% of cancers are from HPV so that was reassuring.But she still wants a repeat pap. They took some more blood and sent me on my way, until February. Free free at last! till then anyway.

Tina, I thought of you because at my ocologist's office, the other side is a cardiology practice. They even share the same waiting room. It never occurred to me that maybe there is a reason? HMMM. You did say that there wasn't any damage to your heart, right? I still can't believe that happened to you, I am just mortified over it.

Well, looks like my dinner out turned into a washing machine as mine bit the big one yesterday. It has lasted 15 years with no issues so I can't complain. It's just that it still looks new,  I took care of it. Just like my Dyson vac. No one is allowed to use it but me and I know I am crazy, but I clean it. Maybe I do that, so when something does break, Jeff can't say it was because I mistreated it. HA! Oh no, can't accuse me of that. He cringed at buying me that vac, I begged for a year, and I really do like it. He hates it because of the $'s it cost. He made me cry the other day because he said we could only spend 40.00 on each other for Christmas, well I had been squirreling money away to buy him a GPS. So I finally got it, and he springs that on me. Geez, what can you buy for 40 bucks? I can't even fill up my car for that! He is so grinchy this time of year, but he really hates the commericialism it brings on. And I notice this time of year how the public is stressed out and irritable. Why did we let Christmas get this way? So sad. I may just have him buy me 40 bucks worth of lottery tickets, gotta be a little winner in there. I'm KIDDING!!

Have a good weekend everyone!

Viddie, I have so much respect for you for standing up to the doctor like that. Good for you. Like Rebecca says, bc is kinda viewed as chronic, so we have to have doctors who will listen to us. Like so many others, my dr doesn't do routine scans, though he immediately jumps on it if there are symptoms. I think I am ok with that too. I was so anxious about the sigmoidoscopy, the pap, the mammogram, I just can't see  going through that anxiety any more often than necessary. He did a muga on me once I developed edema but not before chemo, for example.

Tina, that sounds like such a horrific experience and I am so grateful that you are getting stronger. Poor Paul. How are your kids doing?

Lynn, you will do fine on Monday. And do whatever is right for you re your nutty sister.

Sharon, you are always so centered in your comments. Your posts soothe me!

Hi Amera!  How is work going?

Nancy, I am sorry about the lymphedema. I worry about that too as I had 34 nodes removed. I was just thinking about it this morning when I woke up with my arm all tingly from sleeping on it.

My husband is exactly the opposite of Nancy's. He is very budget conscious all year; then Christmas comes and he goes nuts. The kids have set dollar limits on their gifts to each other, with our encouragement and blessings. But Steve will have none of it for us. I thought we were basically done with all our buying, and then this morning he suggested more things for them ... I have done all the shopping online, basically, with my lifetime goal of avoiding malls, but I think I will go with him today to rein him in. It's so funny because he literally gets a migraine if I overspend by $50 on the food budget, but he makes up for it this time of year. He just loves giving gifts this time of year. Kind of sweet coming from such a tightwad.

I hope everyone's weekend goes smoothly. How are you, Skye?

Melia

Hi Girls,

Quick check in.

I called my sister, all is good. I told her how disappointed I was, so got to say what I needed to say.  We're good now, she came over and gave me a pajama gram (gift of PJ's) and a lovely card!  Thanks for all your support!

Mom is moved out! woo hoo!

Ally is sleeping over a friends house.

So that leaves George and I to have a night alone (it's been a few months).  He picked up steaks and wine.  We're going in the hot tub, having a fire in the fireplace, and enjoying each other 2 nights before my surgery!

Life is good!

Melia, you are right....  Sharon's comments are always so centered.  Sharon, you deal well with it all.  Very level headed.  I'm def. more of a spaz. 

Viddie, if I lived there (again), there's no place BUT Dana Farber I'd go to for tx.  Well, perhaps MGH...they have a good BC program and my aunt works there...  we are very spoiled in Boston w/excellent choices for medical care.  But, I must say, OSU rivals it in every way.  My brother was horrified I didn't return to Boston for this latest thing.  I'm like "whaddaya think, we can just jump up, fly off and ditch the kids?"  It'd be one thing if I was being treated at Podunk Hospital, but OSU is certainly not that.  The DH and I, actually, prefer the care here because the doctors take the time to really talk to you.  Much more so than on the east coast.

And speaking of which....  all at the most minute stages right now, but the DH may have a job opp. in......  drum roll.....  Nashville.  Not my top choice, but I'd do it for a year or two.  Better weather than here, no income tax, cost of living is similar.  We'll see.  But my big question is, what hospitals are there...  St. Jude is way out west in Memphis.

Lynn, ENJOY your weekend!  I'm so glad you sound so positive and upbeat and that you fixed your sister issues.  Now you can relax and just focus on yourself.  I will be thinking of you all day....  12 hours is long.  Longer than my TRAM, I think.  But, boy, if I'd had known about DIEPS, I'd def. have done that over TRAM.  I will be so anxious to get a post from you.  Can the DH or Ally do that for us? 

lynn ummm hope you had a good evening and glad to see your sister issues are solved .

One thing about sisters and this I have learned over the past year . We are all so different but always connected .... I come from a family of 5 girls , 2 different mothers but the same father , I connect with the youngest the most . We all over the past year have worked out our differences all because of bc . You see now that 2 of us had it , my younger did not survive we have become closer . We live thousands of miles away . They all live in Calgary me here in Ontario . I am the oldest the black sheep the rebel ..... the one who was always getting in trouble .... I am the one who has lost my mother at the early age of 31 ,our father at 43 then my sister at 34 .

I also have survived a abusive relationship with my sons father and ended up in a womens shelter at the age of 28 . All though this working and keeping myself under a dry roof !  met my dh at work at our Christmas party and now am married to him for 19 years .

Then BC and colon cancer hit ! When I hd my DX all of my family suddenly was here for me . All my sisters have walked donated and been here for me through out the past year ...... I often wonder what the heck is next ? What more do I have in store in this lifetime ?

Well I do know for sure I have all of you and that my dh and dd's my family and friends are the greatest things I have .

There's a book in itself ..... I am keepng up my blog and am planning on adding my lifestory in detail to it before the end of the year . http://shortiscabin.blogspot.com/

The New Year is arriving soon Jan 2008 will be here sista's !

Tina Nashville sounds fun I was there once on a business trip and stayed at the big hotel there the Gaylord Complex by the new grand ol Opry and went on a riverboat cruise . There has to be good medical care there . good luck let us know how you make out !

I am off to get our decorating finished soo all enjoy your Sunday .

Hey Ladies,

Wow, a whole book's worth of posts has been written just in my absence!



Joni, it took them 2 hours to get the dye in me last time too, I can so sympathize with you there. I'm also praying the lighting up stuff is just flukes or false positives, which can definitely happen!



Tina, it was great to read things from you again. And yeah, do not hesitate to put yourself and family first. You now have not only the C card to play but the H card too! Keep healing!



Rebecca, I think that with Owen you are probably incubating the world's next great fantasy novelist, and he is just practicing his future trade. :-)



Caya, if there's one thing I know, it's that nurses love cookies! Sure to be a hit.



Debbie I'm so glad your mammo went so well. Mine is this Wednesday now, if she doesn't cancel again.

I have Herceptin tomorrow.



Lynn hope you had your lovely evening, and all thoughts and wishes with you for tomorrow!



Viddie, you go girl, way to tell 'em! I did have those scans recently but I don't think I would have, had it not been for the breastbone pain, and my onc's great suspicion of HER2's ability to spread itself. I especially feel you should not have to prepare to do battle every time you see your onc; you deserve better than that for sure.



Sharon, you have had a most interesting life! I'd read your autobiography!



Hey to everyone else; Amera I was wondering how your job is going too. Mary hope it was a nice dinner.



My trip went pretty well. I made it to La Crosse in 3 1/2 hours and my arms did hurt some but I had a motel room waiting and got there in time to take a nap before the signing. I had planned to stay with a girlfriend there until she informed me the guy she met on the Internet last month would also be there overnight. I just couldn't do that, and DH booked me a room right away. Turned out to be the best for rest. I had a nice dinner out with my friend and her new beau after the signing, then retreated to my motel and slept 10 hours. My arms are still rather sore after the drive home but I can rest them today. And tomorrow I get to laze about in the chemo room for Herceptin. I should also learn the results of that last echo test.



My house still looks a horrible mess with the contents of the spare room all over the front hall and living room as DH works on the floor in there. It's about half done. And I found out I may be having the family Christmas party too, in fact I think it's a done deal, which means I really have a lot to do. And Grendel's room has to be ready by the 17th. Plus we seem to have non-stop snow/rain mix here and very cold temps which combine to make icy roads. But I think of what some of my sisters here have just been through and all those things seem minor. Wishing Sunday relaxation to all... Skye

Lynne, we will all be thinking of you tomorrow. Stay strong, and know that you are loved.

Joni, how are you feeling?

Debbie, yep, my anniv was last month. Tues it's a year since the mastectomy. All the anniversaries have me a little agitated ... but the 20th is the anniv of the path report, no node involvement. So that was a good day.  Esp since the surgeon had warned the family that he expected positive nodes. All in all, this will be a better Christmas for my family than last year.

Melia

Nancy - Sorry to hear about the bad news on your arm. What will you need to do to keep it under control?

Lynn - I'm so glad that you were able to talk to your sister so that you won't worry about it going into surgery. Would you ask your DH to email one of us with an update after your surgery like Paul did with Rebecca?

Caya - I'm glad you went in and got checked out. I hope you feel better soon.

Hi everyone,

Just got home from Kansas, and we had a good time.  Mainly just hung out with my mom and sister - there was an ice storm in the area and that kept us from going up to the small town where my brother lives, as the roads were icy and it didn't seem worth dying over.  They were having the town Christmas celebration that day and my SIL was in charge of it, so they couldn't come to us.  That was a disappointment, but gave me more time with mom.  We came home today, half the trip was on ice but then we caught up with the front and got home to 74 degree temps.  Give me cold weather any day!

Lynn, I'll be thinking of you tomorrow - I'm sure you'll do well but please have someone let us know.  Joni, please check in when you have more news - I hate that you have to worry about this, but am hoping that all is well and it was a false alarm.  If not, though, I know you are strong enough to do what needs to be done to beat this beast.  Viddie, good for you for standing up for yourself!  I agree that a change in oncologists is probably a good idea, although the standard of care now is pretty much what you are getting - no scans unless you have symptoms.  However, you need to be comfortable with your physician, and it doesn't sound like you were treated with respect.  Tina, so glad you're home and better.  You are so important to all of us - take it easy, and be good to yourself.  Nancy, sorry about your lymphedema - I was afraid of that.  I can help you figure out what to take when if you want me to.  There are online tools also that will detect drug interactions, if you want me to find one of those for you.  Just PM me. 

I've got to get to sleep - will catch up tomorrow.  Love you all.

Thinking about you this morning Lynn!!!!

Been thinking about you all weekend Joni…I hope you get answers soon….do not forget to update us!

Caya I am glad that you went and got yourself checked out.  Make sure you go back if you do not feel better, although it sounds like whatever it was is resolving itself.

Nancy, did you make an appt with that PT, or did you decide it was not worth it?  If you want my two cents I think that you should make an appt even if there is a long wait, especially considering that Lymphedema is a chronic condition.  To answer your question I take two medications every day, and I take them together.

Mel glad you are home and that you had a nice time. 

Just packed Frances and Matt off for a school sponsored camping trip.  It is actually a really nice program, and Frances has been looking forward to it since the start of the school year.  Of course right on cue, she came down with a cold…thank goodness Matt will be there because he can slip her some cold medicine (otherwise she would have to do without due to medication restrictions) They will be gone for three days.  Not sure what the school was thinking scheduling this for December….it is miserable outside now, cold and rainy, but the forecast is calling for milder weather.  I have my fingers crossed for them.  They brought lots of layers, and I gave Frances my raincoat to wear over her jacket.  My raincoat is absolutely HUGE….I used to wear it when I was 9 months pregnant with Owen, and I was not petite when gravid.  Owen does not appear to be very upset about his sister and Dad being gone, but Ana has spent most of the morning very weepy.  Poor thing feels so abandoned, because not only did her sister and dad go off, but her TEACHER (who she adores) is also chaperoning.  Going to have to give her a bit of extra TLC for then next few days I guess.

Heading out shortly to drop Ana and Owen at their respective schools, then I am off to the imaging center for my MRI.  Oh joy. 

Hi all,

Caya,

I hope you feel better soon. It is so frustrating and frightening when we do not know the source of our pains. I am so glad you went to the hospital and they were able to rule out the worst fear.



Sharon,

You have led quite a life. You are a true survivor is so many ways.

Nancy,

I take 2 calcium with Vitamin D, one in the morning and one at night. I also take tamoxifen, one a day vitamins, and magnesium with lunch. I heard that magnesium should be taken two hours after calcium. I hope you find some good exercises for the lymphedema.

Tina,

I have some good friends in Nashville, so if Paul accepts the job, I can find out more information about the hospitals in Nashville.

Lynn,

I am thinking of you and sending positive vibes.

Joni,

I have been thinking of you and hope you get some answers soon.

Rebecca,

I hope Frances and Matt have a great time. Where did they go?



I guess I partially understand not having ct scans or pet scans unless necessary because of unnecessary extra radiation, but if there are blood tests that could detect something, like the ca125, cea, ca15-55, ca27.29, shouldn’t we be privy to them? Even if they sometimes show false positives, they also might catch something in the beginning phases. They say MRI’s show false positives, yet finally they are now given because of the potential c findings. I also have trouble with the mantra given by most oncologists that finding out sooner about mets will not make a difference. I just do not agree. Catching it before it spreads more makes more sense to me.

Okay, I have to stop thinking. Today is the anniversary of my first surgery, my lumpectomy. This was before I knew they misdiagnosed my 2nd tumor as atypical cells, (not necessary to remove), instead of DCIS. Had I not gone to DF for a 2nd opinion, I would not have known I needed a mastectomy and would have had DCIS still in my breast- a disaster waiting to happen. Another reason to switch to a bigger better hospital.

Here I go again. I have to get my head in a better place. I am meeting a friend for lunch. That should cheer me up.

Catch you all later.

Viddie

Greetings all!

I post with glad tidings...I received an email from Lynn's DH George a little while ago, and he tells me that our beloved sister Lynn has weathered her surgery well, and was in recovery as of 7:30PM. Hooray Lynn!!!!!!!

The text of his email to me follows:

Lynn's doctor just called and she's in recovery.
Everything went just fine.  No surprises, and she was
stable throughout.

  Shelley (her daughter) and I expect to be able to
see her within the hour.  I will report that I have
sent the word of her success out to you.

  She'll be in recovery for about 24 hours, getting
to her room sometime Tuesday afternoon/evening.  I
have her laptop at the ready, and although I don't
imagine it will be on her lap right away, I'm sure
that she'll be on the board as soon as she's able.

  You ladies mean quite a lot to her, and I just want
to say Thank You to all of you, for giving her
something that I never could have given her.  The
sisterhood that she feels for all of you comes through
loud and clear everytime she talks about any of you.

Thanks again,
George