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Saw Oncolgist/gyno today.. Saw Oncolgist/gyno today..

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  #1  
Unread 09-02-2004, 11:19 PM
Saw Oncolgist/gyno today..

Greeting to all,
I'll try to make this short.. (but am sure I will fail..lol)

Background.. ovca stage 1a that ruptured during surgery, that was performed by reg. gyno. Needing Chemo as a preventive incase any remaining cells were left behind.

Oncologist came to see me in hopsital and suggested the type of chemo that is given directly into the abdomin (sorry can't recall the name). He ran it by an oncologist/gyno and she agreed with him. I asked my gyno (at two week post op visit, last week) about this, he too was in agreement with it.
I decided I wanted to have consultation with the main guy of this gyno/oncology group instead of the woman doctor that reg. oncologist had spoken to on my behalf. (because I had two wonderful recommendations to see him)

Okay.. main guy, founder of this group, major creditals, (I found a lot of stuff about him on the internet)... his suggestion?
Standard Chemo, four rounds.. one every third week.
This means, I will lose my hair, unlike the other treatment that was suggested. (directly administered into abdomin)

It gets so confusing when you have three doctors in agreement to one way of treatment, and then this doctor suggesting the other.

Who does one believe?

I didn't think the idea of losing my hair would bother me this much, but it does..
I went to wig store today and lost it, going to try to go again tomorrow... with my friend (a hairdresser like myself).

When I walked out of his office today my head was spinning. Even though he will over see my treatment, I can't have it at his place (he is outside my HMO group). Plus he gives me a rx for homornes, (I'm having some serious shin pains that are lack of homrone related) which I don't know if that is the right thing to do either. (more confusion)

I ask to talk to him again, to ask about the "debulking" (is that the term?) since he never brought it up. He said he didn't feel that was necassary. My Mom asks him.. "shouldn't she have a catscan". He *thought* one had been done, and quickly orders one prior to starting treatment.

I hate when *I* have to learn someone else's job for them.. or in this case, my Mom did.

Okay my questions.....
1. hair loss, do you come to terms with it and not live in continual freak mode every time you see yourself?
2. has anyone had the type of treatment where it is done via the abdomin directly?

I am leaning towards jus doing it his way.. and be done with it. He wants to start it next week (well, if catscan is compete) and I am scared.
I did like him, although he does have a little whacky sense of humor. IE: telling me to get a "red wig" (when I am blond).. I am sure he was just trying to make the wig thing be a "fun" experience.
Thanks for letting me vent.. I know I am all over the board in this thread. (focusing isn't my strongest suit these days)

xo Donna
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  #2  
Unread 09-02-2004, 11:37 PM
Saw Oncolgist/gyno today..

I'm glad you got in to see him! My instinct would be against the intra-peritoneal chemo, since to me there are infection risks that a "standard" four-round course wouldn't present. I've not had to deal with hair loss, but there's been some wonderful posts around here looking at the different aspects of the experience (some quite humourous!). I've always liked the scarf look, myself; several of my friends have chosen that route, with or without hats, and it's been quite appealing and not "freaky" at all. Not as scratchy as a wig, either.

American Cancer Society does a day long beauty seminar that I've seen advertised, at least at UCLA. I'll bet other cancer centers offer it too, and if I see one scheduled at the facility where I work, I'll let you know!

As far as the HRT issue, there have been some very recent threads on that subject. There are as many differing opinions on the subject as there are women, I'd think. You'll find a lot of guidance on that issue, but in the end the choices are yours. I know that the group where you go does prescribe HRT as a matter of routine (at least, that's what they did for me), in part because the head of the group had done some research on HRT use in estrogen-dependent breast CA.

Would the "regular" oncologist be doing the treatments, since your HMO doesn't cover the group? Or can you appeal to the HMO (they're pretty reasonable, from what I've heard, given a reasonable argument) to have the "true" experts treat you in their office?

Big s to you -- I'm so glad that you got in to see the "guys" and at least got that other opinion!

Audrey
  #3  
Unread 09-02-2004, 11:59 PM
Saw Oncolgist/gyno today..

Hi Audrey,
SO glad you saw this post.. being YOU were one of the one's how gently pointed me in his direction..

Who exactly would I appeal to? My IPA (HMO), or my insurance company directly? I guess I could ask the receptionist at the practice who to contact, I am sure she'd know who I needed to talk to.

It truly put me in a tailspin trying to sort all this out. Then I wondered IF the first oncologist would take offense that I decided on my own to seek out someone else's opinion and not go with who he told me to go to see. (she is the one that agreed with him about the abdomin thing)

When I thought about the Ab. thing, the idea of leaving myself open to an infection scared me. Not to mention, I was assuming that with the cathera (sp?) in place, I doubt I could take baths.. and I am a bath taker! Especially under stress.
People talk about bone pain with chemo, and the first thing I think is hot bath.

Thanks for your advice, support and guidance.
xo Donna
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  #4  
Unread 09-03-2004, 12:32 AM
Saw Oncolgist/gyno today..

Their office manager, at least in the Long Beach office, was an absolute gem, and helped me sort things out. Hopefully, that lady is still there (Terry) and can help you out.

I'd ask the insurer, calling and asking if they have a case manager (a nurse who works for the company) who can help you navigate all this. The office manager in their practice can work with her to coordinate things. You might need an approval from your PCP or GYN to bypass the "normal" procedures -- but if you insist that your GYN cancer be treated by a GYN oncologist, I think you'd have a good chance of being able to go out of network.

The "regular" oncologist is a good guy, but I'd prefer to be with a GYN group that understands the specific needs of your condition! And baths are important, I understand completely!



Audrey
  #5  
Unread 09-03-2004, 07:36 AM
Saw Oncolgist/gyno today..

s Donna

I too vote for the systemic chemotherapy. And I am kinda wondering why only four treatments?
Unfortunately your ob/gyn performed your surgery. They are not the best at debulking or staging. You received a staging of 1a.
The rupture alone would make your staging be a bit more advanced than 1a.
In your case a PET scan might be more appropriate than a CT scan. PETS can do a better job of finding smaller areas or cancer that CATS. This could aid with staging.
As for hair loss, it might not be as traumatic as you are thinking.
I know that I grieved over the impending loss of my hair, but as soon as it happened, I was over it. I think this holds true for many of us.
Best wishes.

karenann
  #6  
Unread 09-03-2004, 07:51 AM
Saw Oncolgist/gyno today..

Donna, I don't know of radiation but PET scan have given info on my cancer that CAT scans did not pick up and this changed my tratment.I also thought the hair loss would be traumatic, but it was n't. In factI had a friend shave my head because I didn't want to have it come out little by little. after it was shaved I looked in the mirror and saw my Dad looking at me! I never realized how much I looked like him. He had died suddenly three years earlier and I missed him terribly. Seeing how much I looked like him made me feel how close he was with me thru out treatment. Now my hair is long,wavy, and I opted to not dye it, so it is silver and soft. Being bald gave me a fresh start and my hair is healthier than ever. I didn't do the wigs, but the youth group i work with took up a collection of bandannas for me and I liked wearing them.
.
  #7  
Unread 09-03-2004, 09:55 AM
Saw Oncolgist/gyno today..

Hi Donna,
I agree with karenann and shephardpal. Once you have the initial shock of losing the hair, you adjust to it. Ihad my daughter shave my head when it started coming out. There are lots of cute hats, scarves and wigs out there to use.

Keep us posted on your decision and progess. Those of us who have gone before are here to support you now.

s
Jane
  #8  
Unread 09-03-2004, 10:27 AM
Saw Oncolgist/gyno today..

Hi Donna,

The thought of loosing my hair was the worst for me also but I did make it through and it did grow back.

I am now facing the same situation again for a recurrance. I an not a hat and scarf person so wigs worked the best for me.

Rosalie
  #9  
Unread 09-03-2004, 10:32 AM
Saw Oncolgist/gyno today..

Audrey,
Yes Terry is WONDERFUL, I have a call in for her right now.. to find out who I need to contact to see about making this *demand". (to have treatment at a gyno/oncologist instead of the regular oncologist in my IPA).

Karen,
Yes, the rupture does make it a "c" instead of an "a". (or the potiental of a "c", I imagine, since no one knows for sure IF any cells were left behind)
When the office manager (who me and Audrey are talking about) calls me back, I am going to ask her about the pet scan instead of catscan. (she can either talk to the doctor for me, or set up another appointment for me).

Shepardpal,
Thank you for your encouraging words about the whole lossing the hair issue.
I don't look good in hats or scarfs etc. My hair has always been one of my best features. AND being I do hair, well.. the idea of a bald hairdresser seems like "what a freaK".
I have made a decission to buy a few wigs and make them a accessory to the "look" I want for the day.
This is going to require more planning on my part... since I am rather on the lazy side when it comes to being high maintance.

Jane,
Okay, this is the beginning phase of the inital shock I am going through. It sure is going to be upsetting to have to shave it, but I can see that to sit by and watch it fall out would be MORE tramatic.
I see you and I have a similar stage and that you had three treatment, are you finished with them now?

Thanks to all of you for sharing your wisdom and support.
xo Donna
  #10  
Unread 09-03-2004, 10:52 AM
Saw Oncolgist/gyno today..

Hi Donna,
I too was staged as 1C because of a rupture during surgery (done by Gyn, not gyn/onc unfortunately). The option of abdominal ? never was presented. However, I was originally scheduled for the standard 6 chemos, but only had 3. I started reading about some clinical trials that are going on for 6 vs. 3 for the early stage dx. Reports are coming back that there is no benefit to having 6 instead of 3, so my onc. and myself made the decision to stop at 3. I was unable to get into the trial because staging was not done by a gyn/onc (which I now see by the way for 3 month checkups!). I would suggest following up to see if you can stop at 3 treatments.

As far as being bald, I was like you and needed to have hair due to my business, meeting clients, etc. and went with a wig. I never did get comfortable with being bald and was unable to ever look in a mirror and see "me" - so tended to avoid mirrors

Hope some of this helped-
Liz
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