DUers are the best - bar none - in the entire "internets"

[Democrat 4 Ever]

I shared with you guys back in August that I had been diagnosed with Breast Cancer. I went through the whole deal leading up to and including expected treatment plans. On the day I got my diagnosis I also lost my job.

I can't begin to tell you how much I appreciate the kind words, private messages, encouragement and hope I have received from all the DUers. It helped more than you can possibly know. Right after posting my original pronouncement as a new member of the "Club NO One Wants to Join" my donation star ran out. I could not reply to anyone because posting in special forums is a privilege reserved for supporters to DU. This is certainly NOT a criticism of DU admin - our special playground doesn't come cheap, is well run, and is a lifeline of enormous proportions for people in this country (world!)that need an island of sanity in the middle of the rethuglican hell we find ourselves in. Anyway, I couldn't reply to thank each and every one of, ask for info, offer my own brand of encouragement until today.

A very kind DUer PMed me to offer his good wishes. I PMed the DUer back and explained why I posted and then "ran out" on the cancer group. This kind, special person PMed me back and informed me that he had donated in my name so that I now have an extra special star. I can't begin to thank him and his wife enough. I will never find the words to express how this kindness has touched my heart. I look forward to the day I can return the favor and/or pay it forward.

So, that said, I'm back, I need you all and hope I have something to offer you guys in return.

I'm not sure if I should give the donors name or not - although I would like to shout it from the rooftops just so everyone will know what a wonderful we have hanging out in the "Club No One Wants to Join." If I receive permission I will gladly post it because they were kind and generous to a total stranger.

And a special shout out to Imalittleteapot - she has kept me laughing, informed, kept my head on straight with the ups and downs of trying to decide on a treatment when all the oncolgoists around me are losing theirs. I am very blessed to have such a new friend from Texas.

[LiberalinNC]

1. Glad to read you're doing better.

As I told in my PM - we b/c sisters must stick together, we are after all, bosom buddies!!! ;)

Stay positive!!!

[flamingyouth]

2. I'm so glad to hear from you.

And I'm sorry you didn't have a donor star and that I didn't notice! :(

Anyway, take care and keep in touch. :grouphug:

[Democrat 4 Ever]

3. Just a brief update on my cancer journey. Nothing has been

straight forward and easy. My surgeon and first oncologist said I would need "at least" six months of chemotherapy. I didn't really "click" with the oncologist for some reason. She didn't answer my questions, I came away with a significant misunderstanding about the treatment proposed, etc. so I asked my surgeon for a referral to a new doctor. Didn't want to get three months down the road and regretting I didn't change while I had the chance. In between the first oncologist and second oncologist appointments my surgeon installed a cath port for the chemo treatments.

Enter Oncologist # 2. Really like her. Funny and took all the time in the world to answer questions, etc. The only difference is SHE recommended absolutely NO chemo. Period. Wanted me to go on Femara for five years and call it a day. Said since all lymph nodes were negative that chemo was not indicated but if I was going to worry she would put me on three months of chemo but stressed it was for me and not the cancer. Said if she were personally presented with the exact same test results she would not even consider chemo. Yeah, rah, rah! Gave me three or four days to think about it and decide. Took several days, consider all points of view and decided if she felt that strongly I didn't need chemo I was going with her opinion. Got my Femara Rx filled and began my treatment.

I then called my surgeon and asked to schedule a procedure to have the cath port removed (Oncologist # 2 was adamant about getting that thing out.) This is where the surgeon goes ballistic, stressing I HAVE to have chemo, yadda, yadda, yadda. Enter family practitioner who recommends I see a THIRD oncologist for a "tie breaker" consult.

Like Oncologist # 3. I went just knowing that all the indecision would be gone. A plan - including chemo or not - would be settled upon and I would start getting my life back on an even keel. Au contraire, mom ami (all the high school French I remember!). Doc # 3 now suggests a test to determine my likelihood of a recurrence of cancer to finally decide if I need chemo or not. Of course, this test is very expensive, not covered by most insurance (although Medicare does cover 100%). Without the test he recommended that I have three months of chemo. Period. Answered that question.

From everything I have learned about the test it is about two years old, extremely reliable and accurate and someday everyone with breast cancer (maybe all cancers, I'm not sure about that) will be given this test before commencing with chemotherapy. Right now I'm waiting for the results of that test so I will know what is next on the horizon. Will take two to three weeks - some time after the first of October I will have my answer.

The only reason I'm relaying all of this is that everyone who has breast cancer (and ask your doctor about other types) is to try and get this information before starting chemo. It cannot be done if you have already had chemo is my understanding. It will actually give you a percentage of chances of a recurrence of cancer. The test is called Oncotype Dx and it is suppose to be the "wave of the future."

Also, there are "scholarships" available that will pay for all or almost all of the test if your insurance denies coverage. I received a scholarship and managed to scrap up the rest of the dough just to be safe. Even if the test comes back stating that I am in a higher percentage of recurrence this is information I can use and be aware of from now on out.

I was surprised it took a third doctor for me to even find out about this test and I wanted to share what little I do know about the test with my fellow DU cancer travelers.

[LeighAnn]

4. Wow!

That's the way to fight cancer! I've known several people who had cancer and went with the first treatment option presented to them, without even questioning it. I applaud your diligence, and hope you are doing and feeling well!

On edit:

[Democrat 4 Ever]

5. Thanks. I have had more than my share of roller coaster rides

lately. I'm just glad I went with my very first impression of Oncologist # 1 and asked for a new referral or I would already in the middle of a long six months of chemo without even a clue that there was a test available to help me make important decisions.

In my long, rambling dissertation of the personal trials and tribulations of a cancer diagnosis I hope people come away with the message of ask a million questions. Don't decide immediately on any proposed treatment plan (get AT LEAST a second opinion - heck I got three and I'm still planning) and look on your surgeon, oncologist, the nurses, lab techs and even the guy who empties the trash in the exam rooms as working for you.

I was truly fortunate to have doctors who gave a damn. It would have been very easy for the surgeon to just pass the next phase of my treatment on to Oncologist #1 and/or #2 and wash his hands of the entire deal even though he might disagree with the treatment plan. Believe me, I wanted to ignore him and not think about it but my common sense kicked in and said if the treatment plan outline by # 2 was so great # 3 would agree and it would shut everyone (including that little devil that lives in my head) up.

Here's to better health to everyone, happy days ahead and a million thanks that you guys are here.

[LiberalinNC]

6. You did absolutely the right thing by getting 3 different opinions!

I actually had 5 - 4 all agreed on the same course of treatment and the 5th doctor suggested I go through this high-dose, highly experimental course of treatment. I went with the 4, and found the doctor I liked best. 14 years later no regrets!!! Did you call 1800-4-cancer for their treatment plan?

[flamingyouth]

7. I wish we could pin this post at the top of the forum.

I'm sorry you had to go through all of this, but there is so much important information here:

1) Get second (or third or fourth or tenth, whatever) opinions.

2) If you don't like your doctor, run and don't walk to another one.

3) There is financial help out there!!!

4) Get as much info as you can - but if you connect with the right doctor hopefully that's a moot point; he or she will provide all that for you.

I didn't like my first surgeon much at all. I think he did a good job operating on me but he was very poor with follow-up care and when I had complications, he was a total zero. He wouldn't answer any questions and I was completely on my own. Luckily I was able to connect with a great oncologist (through a friend who's an oncology nurse) and through him I found a new urologist/surgeon.

Anyway, again - all my best to you. You are in my thoughts and please let us know about your test results. Take care! :grouphug:

[JohnnyLib2]

8. It's good to see you back

and amen to Flamingyouth's wish to pin the comments.
We have yet another friend who is getting more opinions and joked about setting up an online opinion poll! Keep us posted, please.

[Imalittleteapot]

9. You're baaaaaaack.

Excellent. Thank you to the DUers that bought D4E a star. She's a blast and has a unique chemo or not story.

[JohnnyLib2]

10. How are things going by now?

Sure hope you got some consensus from all those docs.