Not Buying Into It

allalone

AMP, those articles are a timely reminder because I was going to warn Pompeed (listen up girl, even if you've heard it a thousand times already!) to keep a close watch on the mx scar for any slight change in appearance or feel - which docs can't do for you - because if a recurrence is going to happen this is where it is most likely to occur (not fact, just my opinion, and I throw it into the ring because I care and wish to support everyone, no matter what they choose to do).

Otter and Pompeed, my previous post referred to the lady AMP talked about - who wanted up-to-date tx, not alternative tx - and the vet ref was just thrown in for fun, as upthread you did mention that a vet friend helped with the drains.

lago

allalone you are correct in thinking that one of the places local breast cancer can reoccur is the scar. My onc and BS always run their fingers along my scar during the exam. For me this is the only way they can tell since no more mammograms for me.

thenewme

Hi Pompeed,

I agree with Otter - your latest post is great!  It seems as if you're settling in, and I'm so glad you've stuck around!  We were so worried about you in the beginning!  How are you doing?

Otter, OMG - that video would be soooo funny if it weren't so true.  I'm a medical transcriptionist for one of my jobs, and it's scary how many HUMAN patients are like that wrt their own health. Thanks for the laugh (or should I cry?)!

Pompeed

It can be very good to have vet friends.  If one has a personal relationship with them, they can do all sorts of things for people and animals too.  My closest and dearest friend is a vet.  She doesn't practice any more -- she's an expert in pathology and toxicology and works in cancer research for small pharma now -- but she's always the first one I call about medical matters. Regardless of whether the question is about the animals or a human.

Bren-2007

OMG .. Otter .. that video was hilarious .. except kind've sad too cause you just know that stuff must be happening!

I'm a medical transcriptionist too .. and you wouldn't believe some of the stuff I hear!

Pompeed .. hope your day is going well.

Bren

Anonymous

This site was recomended by a friend and I am sorry to say (I love this thread) but i did not research well and just trusted the white coats to do what was best for me. Well, I fell out of the treatment protocol after the first chemo-I was allergic to it (though i was not told that til after about 6 months) and I cannot be taken off hormones and have ER+ receptors. The minute docs found those two things out-not one onc will touch me-one stated that i am a 'walking lawsuit.' Great if I could only find a lawyer!! . i have gone a year with no real onc follow-up bec i cannot find one willing to take me on, and i am still have SE's from the chemo-the latest being that my large joints (knees) are disintegrating and I now need two knee replacements. Other than cancer, prior to one chemo, i was a happy and very healthy woman who fishing the beaches like a crazy woman and who owend her own photography and art picture gallery on the OBX. All is completely shut down now after a year of intense illness from the chemo-I am beginning (after a year) to get some good days in and can get out for photography and had the first reunion of my gals from the thread i normally post on recently-so there are so excellent days-but the bad days are still a b#tch. I live on an island and get little support except from this board and it has been a lifesaver!!! I live about four hours from Duke and Chapel Hill, some of the best cancer canters, but the CH doc who came out here to see me (kind as he was to do that for me) said i needed to move to CH after what was done to me with the chemo for continuity of care. he told me that i was never a candidate for chemo with my health the way it is and the fact that i am on three drugs that stop the processing of chemo out of the body. So the chemo has just banged around inside of me destroying eveything in its wake. I am trying to chose to get to quality of life again!! Truly, I do not mind having caner-I am one of the lucky ones in that I have done all that I have ever wanted to do and dying of cancer (or anything) is in all of our fates. Love all that is posted and agree with much-i wish my onc had not given me the BS rosey idea of chemo and "it will be cured' outcomes of treatment-nothing he told me about my treatment was true. And honestly, had i known, I could have made better choices for the quality of life i wanted and I certainly could have handled the TRUTH much better. Love to all, SV

Ang7

Oh StillVerticle~

I am so sorry to hear of what happened to you during chemo.  We had a good friend who passed away during her chemo treatment and all I could think of when they told me chemo was that I was going to die.  The ladies on this board helped me through it but I think I am a lucky one that did not have long lasting SE's. 

We love the Outer Banks and have been going there since I was a child.  I have a teenager that wants to become an artist and she paints some great beach pictures when we are there...

Hugs to you.

Anonymous

StillVerticle - (((hugs))) to you.  I am a photographer as well and artist. Saddened by what you've been through with chemo and can agree had I known now and done more homework and research on effects, I would have opted perhaps a different plan of attack...but no regreats just moving forward and continuing to LIVE everyday to the fullest! xoxo

Lowrider54

StillVerticle..oh, hugs to you! 

Anonymous

Lowrider54 - How's it goin?

AMP47

allalone-you are correct about the goal of the woman mentioned in earlier post's..

Before starting down "the yellow brick road", individuals consider the cost of education and determine the rate of return on the time they spend in college versus the lost opportunity costs of all those years spent in school instead of the work place.  

Sure, professionals typically consider a good "rate of return" and "spill over" of more degreed individuals when deciding on an area to live and begin building their practise.  In addition, to monetary consideration, professionals also consider non-monetized benefits of geographical area when choosing a place to raise a family. 

Regardless of the ingredients that go into selecting a place to work, raise your children and repay your educational debts, waiting for the doctor to arrive in his buggy pulled by his horse are "days gone by".

Whether a doctor set's up practise within a  metropolitan, rural or large agricultural setting, access to information on current treatment of breast disease is, to coin a phase, "only a key stroke away". Information on disease, treatment plans, drugs prescribed, absolute and relative values of risk and the efficacy of each drug, is available to every doctor in most parts of the world.   

A doctors options for treatment are impregnated with professional newsletters, cancer symposiums, presenting the latest research news,  prestious cancer research medical universities, with "on-going" studies and specialized medical practices that support the doctors practise.  

Regardless of his speciality, information is immediately available to doctors via "in house" global satellite systems, the Internet and large professional electronic research libraries boasting the the latest "cutting edge" technology and treatment available.  There should be no question as to what is currently available to help a woman with a specific type of breast disease and the efficacy of the drug chosen. 

The woman discussed in earlier post was very depressed to find out that what she was about to be given would not be effective against her disease.  She reiterated to me, he should have known about this chemo thearpy drug: if I can find it - so can he.  

So, to have the best care available to her, she requested the Harvard educated doctor within the firm:  a Harvard graduate highly respected by her colleges, her alumni.  In addition to having the respect of the local medical community, she offered patients many years of experience.  

She never thought she would be faced with having to argue with her doctor about treatment. Even in the face of over whelming research data, that clearly showed the new drug superior to the old treatment, to be told no, she was not going to receive the more effective drug, in order to survive her disease for any length of time, she chose to stand up for her right to choose another more experienced oncologist. 

Her intention was never to instruct her doctor how to treat her disease. On the other hand, she was insistent that her treatment be the correct treatment.  Since it was her life, she felt the decision to go with the recommendation of the two large cancer treatment centers  was not to formulate her treatment plan, Instead, she wanted the right drug that would give her a "second chance at life" if even for only for a limited time.    

Two acquaintance's, both doctors, have admitted that some doctors get tied up in the "day to day" struggles of everyday practise, patient overload, have little time to keep up on the latest research and patients lives are put at risk: the nutrition for malpractice legal action.   

Lowrider54

onetoughwoman...going ok - hit a little bump but it too, shall pass...

Cat123

I think we are all leery about treatment options...they work so well for some women and not so well for other women.  And, I still don't understand how they test these drugs.  My onc told me the other day that there are chemo pills in trial but the women in the trials are still on traditional chemo....because really, who would take the chance of trying a 'new' chemo drug and nothing else?  Aren't we all guinea pigs in some way?  I believe in holistic and natural cures but it is the same thing....works for some women but not for all women so you could end up living or dying and who wants to take the chance of trying a new naturopathic cure?  That is why we have to trust the whitecoats to some extent but we should still be able to question them. 

Titan

I've never told anyone this b-4..but here goes..when I first met with my onc and we went over my treatments..he said that after chemo/rads I would be taking tamoxifen..I told him that I was triple negative and that it wouldn't do me any good (learned that on here)..anyway...he rushed over and looked at my file and agreed with me..well yeah...

Anyway..I asked my husband..just how much time did he spend looking at my file b-4 he saw me that day anyway?

I did dd ac and taxol...AND..reading on here..that was the correct treatment...but crap..spend a couple of minutes reading my path report..ok???  

You really do have to keep up with things..we may not be doctors but at least we can question our treatments and follow ups.

AMP47

Your are right, titan.

 A friend of mine, is the head nurse, at one of two hospitals, close to were I live.  She told me that the best thing I could do to save my life, help in my treatment plan and make sure my doctor was "on top of things" was to learn as much as possible about the relevance, reliability, how effective the treatment would be and is the treatment appropriate for my type of breast disease.  Advise "I took to heart"  when diagnosed with this disease.  

During her forties, her daughter was diagnosed with breast cancer.  Her mother helped her through her treatment plan, disagreed with a few doctors, a few friends were lost.  But, her daughter is alive and doing very well today under her mothers guidance.  

At this point, my research has been extensive and if it comes back, I will be doing fresh tissue sampling that will provide me with many answers to question frozen tissues can not provide me.

 

Anonymous

For sure you have to stay on top of your treatments......when I was at my onco's and he was discussing chemoembolization, he had somehow overlooked the fact that I am allergic to the dye they use when doing scans!   After a consult with the rad/onco I found out that could be dealt with since my reaction was only hives and they could really premed me heavily with steroids for the procedure, but then when I pointed out to the rad/onco we were dealing with more than one tumor in my liver, he left the room to look at all my reports and scans and came back and told me they reviewed the PET and found I had not only two (which I knew), but three tumors in my liver!!  The rad/onco was very impressed not only with my history, but the fact I know so much about the treatments and drugs and I told him Well, I am on the breast cancer message boards all the time and have learned a lot from others.  Thank you, ladies. 

her2intn

Wow,  you sound every bit as frustrated as I was!  I was diagnosed with a stage 1 DCIS, IDC with 2 neg sentinel nodes in Sept 2010. Since Oct 4th, I have had 3 lumpectomies, still have dcis after the third.  Had neg margins on the first, but one margin was "too close", so the surgeon went back for a better margin and found "an island" of dcis at one margin.  So, we went back to get that out, lo and behold, a longer island.  So the tumor board opted to go ahead with chemo, i had a port,  then I will have to decide on a mastectomy, or radiation.  (lumpectomy + radiation= mastectomy). 

I will tell you, I am a health nut, shop at whole foods, the whole 9 yards. So the thought of poring poison into my system has filled almost every waking moment of my life.  Tears, depression, name it.  I wanted to run away, but there was nowhere to go, there is no more helpless of a feeling.

I decided on weekly taxol/herceptin treatments, and had my first tx last week.  I also chose to use the penguin cold cap to maintain a sense of control, if it works great, if not....well....ok...but, the important message here is that after the first chemo, i stopped fighting, because it was literally making me sick, i was very reclusive for 3 months, crying a lot, but mostly scared out of my mind.  I decided even  the slightest risk of microinvasion (metastasis) (30%) in my case, was just more than i was willing to risk at 55 years old.

Now, every week, i will be glad for every day that i feel alright, try to live as normal as possible, and deal with things as they arrive.  I do not want to look back and say i should have tried this.  Yes there are side effects, but dealing with metastasis would be worse.  As far as my breast, the people i know who have had a mastectomy with reconstruction, say the reconstructed breast(s) are better than they were before.  I can now deal with either one, you just have to go through your own grieving period, then move on. 

As far as being shunned by a Husband or lover, what kind of person are you dating or married to? If your relationship is all about perfect breasts, and not love for whoever you are good or bad, i say dump that jerk, life is hard enough alone, let alone with an unsupportive, negative partner.

Finding a support group is necessary, if you don't have a very supportive group of family or friends.

Anonymous

For sure, staying on top of your treatment and follow-ups is a wise thing to do. I am a seeker of knowledge and have copy of records on everything that has been done. I found I had to be my own patient advocate, in charge of both my treatment and my After Care Plan (especially important since I had three different facilities involved and the right hand never knows what the left hand is doing anyway).

Having said that, there are still many women who are more comfortable NOT being in charge-- they want their doctors to be, as *that* is what keeps their stress level down.

Potayto, Potahto--- whatever floats your boat!

Snow here! Time to get the sleigh out--- dashing through the snow...

Anonymous

Geesh Nancy, seems like you picked the wrong treatment center! I had all female, very compassionate techs that were always  on time. No burns, no rubber boob either. In fact, 10 months later it feels perfectly normal to the touch. Hard to believe there can be such a disparity between centers. Sorry you had such an ordeal.

BarbaraA

I'm with Heidi. I had female techs and did not burn. It has been 6 month and it is getting back to normal. I went to a medium sized cancer center. I had the option to go to Moffitt but there I felt like a number whereas at my center, they knew my name and asked me to be on their team for the Race for the Cure.

hopefortomorrow

Sounds like some of those male techs need their 'junk' radiated!

lago

Ironically the worst and the best experiences I've had with health care professionals (including MDs) happen to be with women. I've concluded that junk has nothing to do with it

D4Hope

Titan I dumped my first onc because every time I went to him he had to go back to my reports and "get familiar with my diagnosis" His bedside manner was terrible and he was dishonest. I switched to a new onc and what a differnce. She comes into the room knowing my diagnosis and she is a warm, caring physician. The point is if a doctor doesn't seem like he cares, rushes you through appointments etc. It's time to change doctors.

PlantLover

Nancy - I understand what you're saying regarding your burned skin not having anything to do with your treatment center.  You are correct - not everyone that goes through radiation experiences a high level of skin burn, I don't know the percentages.  However, some doctors do tell you what you might have to endure. Mine did.  Additionally, it was the policy of my doctor that the techs could not administer rads unless either he or another attending oncologist was on-site. One thing I have found out for certain in the past year, side effects may not have anything to do with who treats you but your experience can be much better if you have a good treatment team.  Of course that doesn't help you now.  I'm just really sorry your team wasn't.

I had aggressive radiation.  I had radiation directed to my clavicle, left breast area, under my left arm, and my back.  I had a form fitted, custom made bolster that was used during some of the radiation to boost and intensive the radiation.  I was burned so badly that I lost all the skin under my arm and across my chest.  I had a really bad burn on my back, but didn't lose any of the skin.

I agree - it was definitely not a walk in the park.  I'm so sorry you had to go through radiation.  Yes indeed, it can SUCK!  Yell it all you want.  I understand!

I miss Pomp too!

Letlet

Nancy, I haven't had rads yet but I just wanted to tell you how sorry I am that you suffered so much. I am glad that it hasn't affected your spunkiness. Am glad that you gave them a piece of your mind and got someone to listen to you.

Big hug.

suzieq60

Nancy -  What did you use on your breast after each treatment? Did you apply anything before you went? It's terrbile you burned so badly.

Sue

suzieq60

Nancy: Aloe would have probably helped you. Very very strange they didn't recommend it as it is used for burns. I had bad skin breakdown under my boob in the last week - not nice at all - but apparently this happens in big breasted women owing to the fold of skin. I used Aloe and Vit E and the rest of my breast was fine but I do have reasonably good skin in spite of being a blonde. Just shows you how different these places are - sorry you had such a bad time of it.

Sue

suzieq60

Nancy,

I'm not finished per se - I start again on Monday on the other breast. They found a very tiny cancer which appears to have been missed a year ago - all gone now and just rads this time - no chemo. Not looking foward to the daily visit but at least they never keep me waiting like you had to put up with.

Sue

lago

BTW I did hear from Pompeed. She is still going through her journey with tough decisions. I don't want to share what she said because that's for her to do. Yes she does lurk on the boards but I'm pretty sure she is not here that often. Sounds to me she's a very busy gal between work and horses.

Anonymous

  I did not go back and read everything that has been posted since I was last on here, but did see your original post Nancy and am sorry you had such a bad time with rads.  As several have said the SEs are individual just as the SEs are with chemo.  I have been extremely fortunate in that I only had bad SEs with one of the chemos I did....but then again I have found with the ones I have been on since and did not really have any SEs that I could not live with, the treatment turned out not to be working.  But again, that is just me as we are all individuals and react differently to things both mentally and physically.  I am also fortunate in that I seem to forget the pain and the bad parts once they are over....don't do this intentionally, it is just the way my mind works and unless I actually record something on paper, find that I forget when I had pain or some issue that I actually should have discussed with my onco.  When I had rads, they ran right on schedule which was wonderful because I was doing it on a long lunch hour and needed to get in and out....sorry again you had such a bad experience.  We all need to rant at times and this is the place to do it.  I am saying prayers for each and every one of us.