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Update on my process and new Oncologist(sorry long)

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

I began this journey at a major cancer center in my area, (Orlando), MD Anderson, thinking they are so renoun they would be the best. My surgeon was ok enough, but if you recall, I had a less than encouraging experience with him and the 2 oncologists thru that center, as far as making me go on wild goose chases to get some help with my anxiety. I had 2 very strange and stressful experiences with psychiatrists, that frankly I didnt really need , I just really needed some xanax intially, then a consult to determine if I should be in antidepressants. But anyway, thats history at this point. The other factor was the trip to MDA is about 45 mins thru heavy industrial traffic. Anticipating both the 6 chemo visits ahead, and then the 33 rad treatments, the trip is really not applealing. However I would not pick a doctor only based on distance.

I started asking around for a recommendation for an oncologist and had some good sources to ask. First I asked my former across the street neighbor, who , when she lived here, was an oncology nurse. She moved about a mile away, but we are still in touch. She is now the Chief Nursing Officer at Celebration Hospital, which ironically has , also a very well respected cancer center, so I figured she would be a good resourse. She recommended Dr David Robinson, said he was kind, warm, very experienced and would be a good fit for me.  Then my husband, who is a remote control airplane hobbyist, has a flying buddy whose son happens to be a surgeon, at that very hospital. He asked him, and ironically, HE came up with the same doctor! Also interesting, he would be the surgeon that does the port.  A good sign. Had wonderful comments about him. Then lastly, one of the gals in my local cancer support group  also saw him, and loved him. So I had a referrel for this doctor from a Nurse, a Doctor and a Patient. I made the appointment.

Yesterday I saw Dr Robinson, and he lived up to his references. He was really very nice, warm, even funny at times. I felt ok with him. Im still terrified, and have some decisions to make, but he was really nice. Also, his office, and where the infusion center is, is the Florida Hospital Cancer Institute, the off site location for  Celebration Hospital. This really nice facility is 10 minutes from my house. Also very appealing.

Now comes my dilemma and questions, maybe you very smart and "been there done that" group can lend some input.

1. Because of my HER2+ he highly recommends going forward with 6 rounds of TCH chemo. He assures me they do everything they can to mitigate side effects.  He also gave me the rundown on the hormone therapy to follow.  Im very concerned about bone and joint pain, as I have that already, and cant imagine it getting worse. Very fearful of that. He also showed me a print out of a tool Adjuvant. It broke down my % chances of being alive and cancer free in 10 years. He mentioned that the addition of Herceptin increases that a bit. But the wierd thing about this print out, and what I did not notice when he went over it, so I could not get him to clarify, was the fact that this printout had information only for ER status, +/-, not HER2. So I dont really know what the chances difference is. But what troubled me about this particular set of data, is it shows that if I do nothing but rad, I have a 51% of alive and cancer free in 10 years. If I do Hormone therapy with no chemo, that goes up to about 70%, to add chemo to the mix it only goes up to about 80%. It really is only showing a 10% additional benefit to go thru all that chemo would put me thru at 62. I wish the % gap was wider, it would make the decision so much easier. He said, that because of the aggressive nature of the HER2 he would highly recommend chemo. But could not really explain the relativly low additional benefit from it.  But again, this tool did not seem to account for the HER2 factor. And now its the holiday weekend so I cant ask him again until Tuesday.  Can anyone shed any light on this for me? Are any of you HER2 and what was your experience with this, and with TCH as well.

 

2. The next thing that is conflicting me. He also said something I did not expect, but when I started to research this online, got just the opposite information. I talked about hair loss. And he said, well with this cocktail, TCH, hair loss is not 100% guaranty, that only about half the people lose all hair, but many just get thinning. OK, that sounded good, but again when I looked into this, I found LOTS of posts and other information, that scared me even further. I could not find a single thing that corroborated his info, yet I did see stuff about the Taxotere, the T in TCH, causing not only hair loss, but PERMANENT hair loss, UGHHHH. Freaked me. So, my second  thing Id ask you very smart people, what do you know, or have experienced with that.

Other than all this and all my fears, Im probably going to go for it, and went and had my last haircut, got it cut way shorter than I normally do, and it looks like crap, but from what others have shared, its easier to lose it short, than longer.

I have an echo cardiogram scheduled for the week after next, then a consult with the surgeon, then the port, then probably start chemo mid January.

Thanks to anyone who reads and offers any insigh here, sorry Im so long winded..

 

 

 

 

SIROD's picture
SIROD
Posts: 2194
Joined: Jun 2010

I will add a comment from my years of being online breast cancer boards and forums (1997).  I don't believe that anyone can tell you if your cancer will return or not.  There are all those percentages, do this and this is what will happen, to that and it will be this percentage.

I have seen women who were stage 0 and 1 go on to be stage IV and die.  I have seen women who should have gone on to stage IV with their stage 3C with large invasive tumor, lots of lymph nodes and never again have a recurrence.  They are still fine all these years later.  No one knows why any more than anyone knows who will develop lymphedema.  It happens to some and not to others.

Do your chemo, herceptin and radiation and it gives you the best odds of being in that 70% group who go on and never again have another experience with breast cancer.  The "pink" sisters!

I remember a lady who sat near me in the infusion room the first time we both had chemotherapy.  We had the same chemotherapy drugs.  The next time, we went, she was totally bald and my hair remained the same throughout my treatments.  She really resented my hair.  They did not schedule her with me again.  I hope she went on and grew back all her hair and lived a cancer free life.  I guess what I am saying is you don't know what will happen to you until you try.

Wishing you the best in your journey,

Doris

 

 

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

wow Doris!

 

That is the most sane, and well said and just plain common sense comments I have seen about this yet.

 

So huh? you actually KEPT your hair? What drugs did you have? and how are you today?

 

Thanks for a good sense viewpoint

Diane

camul's picture
camul
Posts: 2099
Joined: Dec 2010

and my oncologist feels this is helping as it is blocking another avenue where the cancer can spread.  As Doris said, I was one of the stage 1 by one dr Stage 2 by another, who went 8 1/2 years before getting mets.  Without the chemo I truly believe that I would not have had all of those years NED.  Why is it that I have been on 4 chemos over the last 2 years and have never reached ned or stability, my cancer has continued to grow while on chemo, yet others have radiation or chemo and go right into ned with stage iv. 

Bottom line is they do not know how each treatment will affect each of us, so we do whatever it takes to give us the best odds of being here long enough hopefully for a cure to be found! 

The only side effect that I have had from herceptin is a dull headache for about 4-5 days and chemical smelling urine.  That is the easiest of any of the treatments and I hope and pray that it has slowed the growth. 

If you trust your doctor, I would take all your questions to him/her.  As far at losing the hair, I have lost it 3 times.  But on the last 2, all the info included hair loss and my hair actually grew back while on them, so.....

 

Best to you!

Carol

 

 

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Carol, you sure have been thru it huh? I'm so sorry you have had such a tough time.
Thank you for your input, sure does make Ya think twice before believing any do called odds.

I sure hope you get back to ned soon

Double Whammy's picture
Double Whammy
Posts: 2325
Joined: Jun 2010

It's definitely doable, but it's not fun.  I was not HER-2+, so can't comment on that.   I am, however, one of the unlucky ones whose hair did not fully return.  I had Taxotere.  I'm also on Arimidex (which causes hair thinning).  My hair fell out August 4, 2010, I was as bald as a que ball, and only some of it came back.  It's pretty awful.  And it is what it is.  I'm very unhappy about it, but I'm 65 and on this side of the grass.  If I was younger, I would really be upset.  I also believe it was a risk worth taking, even though I didn't know I was taking one at the time.  It's really rare and I have been told that any chemotherapy that causes hair loss has the potential of causing permanent hair loss, but I believe Taxotere has a much higher potential.  My own hair never looked as good as my wigs - but they're wigs.

I hope you get more clarification of your recurrence risks and hope more weigh in on the HER-2 part.

Suzanne

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Thank you for your honesty Suzanne. I'm sorry your hair did not come back. What about your brows & lashes?

It's all such a crapfest, isnt it? Other that the being alive part i guess.

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