Illinois Ladies facing BC - advice about a second opinion

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Karsie
Karsie Member Posts: 6
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

Hi everyone-

This is my first time posting- I am newly diagnosed - Aug. 1, 2013. I just had my BMX ( with TE) Aug. 23. I'm healing nicely and just had my drains removed yesterday. Yeah! I meet with my radiation onc today to see if I will need radiation. It looks as if I will because my tumor was close to my chest wall. I'm not sure yet if I will need chemo as my oncotype results are not in yet. As things progress, it seems as if I am falling into a sort of "gray area" with adjuvant treatments - so I thought a second opinion would be helpful. I'm currently being treated at Loyola- I have a second opinion appt scheduled Sept 25 at Northwestern Hospital with a different MO. Has anyone here ever changed dr and hospitals post surgery but before adjuvant treatments? I will stay with my PS at Loyola because of my reconstruction- plus I really like him! Does anyone know if it is a problem/ or had any experience with having one dr at one hospital but the rest of your dr's at another hospital altogether?

Another question: has anyone had any experience with Loyola?? Aside from my PS I'm finding them to be a little disorganized and difficult to work with as getting test results to me, appt mix -ups etc. Like I said before, I'm new to this. Is that the norm?? I was hoping Northwestern might be a little better.

Thank you so much for any advice -



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  • redroks2
    redroks2 Member Posts: 130
    edited September 2013

    Well, the big picture is that it IS Loyola and Northwestern! Neither are bad hospitals and I would gladly trade you! :) I'm stuck out here in the 'burbs with Delnor which many affectionately call "Hellnor". CDH isn't far but I would have to change all my doctors to switch hospitals. A second opinion is NEVER a bad idea and I will doing it myself as well. A friend told me, "Your doctor isn't a bad tattoo that you're stuck with. Think of it like a pair of shoes, you'd want them to match your outfit right?" Kind of corny, but it makes sense!

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  • aaoaao
    aaoaao Member Posts: 593
    edited September 2013

    I think it would be fine to stay with you PS at Loyola.  The reconstruction isn't a long, continous tx and long term followup would probably me minimal.  My ex went to Loyola in Maywood for an operation on his eyes and it was horrible.  The surgeon was a great guy but the hospital stunk..he eventually left there and opened his own practice.  He also grew to hate Loyola. His experience was that they didn't seem to care about their patients.  I stayed overnight with him because it was a operation on his eyes and he couldn't see.  They let me stay to keep him calm.  That night they wouldn't let the wife of the man sharing the room with my ex stay..even though the man spoke NO ENGLISH.  After she left, they gave him a bottle of iodine and told him to use it before the operation.  He didn't understand and he drank half of the bottle before the nurse discovered what he was doing.  Their only concern was that the operation might need to be postponed and they might get in trouble.  They did call poison control to determine the best course of action and he was able to go through with the surgery...at least I hope the nurses were honest enough to tell the doctor what happened.  I've never been in a hospital where it was the patient's responsibility to put the iodine on the surgical area himself.  WTF!  I also heard the nurses complaining, using the foulest language, about working there.  I also found out that the reason they let me stay was because with the drain tubes and blood flowing down his face everytime he cough, the nurses didn't want to take care of him because it grossed them out.  His doctor even told us that the nurses never saw anything like that and they didn't know how to deal with it. Now I know why they don't want people staying over...afraid of what might be discovered and reported.  After my experienced there that night I wouldn't send a dog there without a chaperone to stay with him.

    As for Northwestern, they are a highly rated cancer hospital.  I believe they made the top 20 cancer treatment hospitals in this year's U.S. News and World reports.  I hope all goes well for you.  You are lucky to be so close to some great cancer treatment facilities. 

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  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited September 2013

    Karsie I am at U of Chicago and I love how all the doctors coordinate at one center. However it is an hour and a half into the city for me and longer out, so my onc there actually suggested we could coordinate care with someone closer to home. This has been working well and chemo was 2miles from my home. I don't have any experience with Northwestern but I would think they could do something similar. Just tell them you want to keep your PS and how would the communication work if needed.



    PS I know a lot of the ladies on the other IL thread use NWestern so you might pop on there to ask them to look for this thread.

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