Illinois ladies facing bc

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  • GK15
    GK15 Member Posts: 4
    edited December 2013


    My friend was diagnosed with stage 4 breast cancer 2weeks ago after giving birth to her second child. Any recommendations on which hopital in Illinois has the best treatments and care for stage 4? Or a specific Dr.


    Thank You


    GK15 (Desperate Friend)

  • illinoislady
    illinoislady Member Posts: 39,835
    edited December 2013

    Today,
    really look around at your world—your family, your home, your pets, your
    co-workers, and the strangers on the street. 
    Smile at everyone you meet because you can see them. 
    Never forget that the gift of vision was so important that when God
    created the world, the first command was for Light in order to see, and after
    the Great Creator was finished with each day’s task, He glanced back on his
    handiwork and “saw that it was good.” 
    We need to see how good it is, too.     Sarah Ban
    Breathnach

  • illinoislady
    illinoislady Member Posts: 39,835
    edited December 2013

    GK-15.....I don't have the answers you are looking for as I live much too far area-wise, but there are a huge amt. of gals here that use the Chicago-area hospitals and hopefully soon one will come along to help you.  I'm so sorry to hear your news.

    Peace and love,

    Jackie

  • camillegal
    camillegal Member Posts: 15,711
    edited December 2013

    GK-like Jackie said someone will be along to help, I feel so  bd thos she just had a baby, OMG how awful for her and her family.

  • lago
    lago Member Posts: 11,653
    edited December 2013


    GK I highly recommend your friend go to a teaching hospital. Also Cancer Treatments of America is another good place for advanced disease. In Chicago proper I would recommend Northwestern, U of Chicago or Rush. She should also check to see if the place has a social worker, palliative care and trial coordinator. Note that palliative care is not hospice. Trail coordinator should help find trails if/when she's interested. Social worker should help with everything.


    Adey I hear Lago has great Italian food too.


    Timbuktu are we related?

  • Timbuktu
    Timbuktu Member Posts: 1,423
    edited December 2013

    Lago, we must be!  Of course I feel we're all sisters on this board.

  • lago
    lago Member Posts: 11,653
    edited December 2013


    Na, I get along with you guys much better than my sister Winking

  • aaoaao
    aaoaao Member Posts: 245
    edited December 2013


    GK15, sorry to hear about your dear friend..to experience such joy and sorrow together. However, she is lucky she has a friend like you. Sorry I'm not fond of Cancer Treatment Centers of America..seems to much like a money machine for me (IMHO). In Chicago, the highest rated cancer facilities are University of Chicago, Northwestern, and Rush. The following, US News and World Reports, provides an annual listing of hospitals along with Specialties. This might help when deciding where to go. I went to University of Chicago for a second opinion and I would go to them if I lived closer. They're about 2-1/2 hours from me so it would be difficult to go there for weekly treatment. I live in northwest Illinois and I go to the Swedish American Cancer Center in Rockford. I'm very happy with the treatment I get there and my onc is following the same treatment plan that the University recommended. Northwestern is ranked #14 in the nation. When I went to University of Chicago, it was ranked #26.


    http://health.usnews.com/best-hospitals/rankings/cancer

  • zap
    zap Member Posts: 1,850
    edited December 2013


    GK15


    And to cut to the chase, what is her insurance? I went to Evanston because that was where my insurance was accepted, My husband has a rare disease and is now at Northwestern with a continuous fight with HMO insurance. We are now on Medicare and can go wherever I want.


    She is young and her insurance (HMO or PPO) will determine where she goes. Being stage 4, she is not in a position to fight insurance to get better care. I did well at Evanston (Dr. Dragon-onco and Dr. Yao-breast cancer surgeon) but I was stage 3. I would tell her to look at her plan and then make a decision...that is the starting point. Aggressive women start there and then seek an alternative if the health issues warrant it.


    Remember Marina Galinsky? Stage four iiver mets after giving birth! She was with my onc and is now going to Indiana for stage 4 experimental treatment. She is doing well but what a fight to get there!


    Help your friend settle and then research!


    zap/susan

  • Timbuktu
    Timbuktu Member Posts: 1,423
    edited December 2013

    I hate to recommend as you never know who is great until you really need them,  But I was referred to Dr. Merkel at Evanston by at least a half dozen people,  He seems to be the one to go to around here,

  • aaoaao
    aaoaao Member Posts: 245
    edited December 2013


    Susan, you are right. The insurance coverage, unfortunately, often will decide where we can go. I'm also on Medicare and can pretty much go anywhere. I just went with her question on where might be the best place for her friend to go, but the bigger issue is where CAN she go.

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited December 2013


    i saw dr dragon for 2nd opinion& he was great - came very highly recommended but distance made my decision to stay with the drs at Christ! They were all excellent & i would recommend anyone there. Bedside manner was great! Drs ricker BS, shifrin PS & stineker ON all made this so much easier to get thru!


    I hope your friend finds someone shes comfortable with - that is so important!

  • illinoislady
    illinoislady Member Posts: 39,835
    edited December 2013

    Don’t
    be in a hurry. 
    Watch a flower grow. 
    It is not in a hurry. 
    It does not compare itself with other flowers. 
    It does not wish to be some other color or some other shape. 
    The flower does not try to bloom. 
    As long as the conditions are suitable, it will come into full bloom and
    the flower trusts that. 
    So just relax and be in harmony with the real.     Leonard
    Jacobson

  • illinoislady
    illinoislady Member Posts: 39,835
    edited December 2013

    I learn something new every day.  Mjsgumbas....Hickory Hills.  What a pretty name and I I'm sure there are many others I've not heard yet.  Hope I can keep 'finding' delight every day.....no matter how small or large.

    Peace and love,

    Jackie

  • MCbeach
    MCbeach Member Posts: 43
    edited December 2013


    GK15-My Drs are at Northwestern. I am very happy with my treatment so far. Let me know if you have any questions about NW. I'll answer what I can.

  • tdbear
    tdbear Member Posts: 286
    edited December 2013


    Just got home from day surgery... RT mastectomy... No nodes just a small spot of in situ BUT I didn't want to deal with lumpectomy ...


    At least this time no ugly ace bandage It's a pretty flowered "shirred " fabric with a ruffle and velcro to keep it on nice and tight!! )


    Happy A real fashion statement LOL


    Will be checking in as time allows me


    Stay healthy!

  • ritajean
    ritajean Member Posts: 4,042
    edited December 2013


    Oh Tdbear....I am glad that the mastectomy went well and that you're decked out in ruffles for the holidays! I don't know where I have been. I am so sorry but I didn't even know you had another bout with this. Hugs to you! I'm sending good healing vibes your way!


    My knee is doing well after the acupuncture and cold laser treatment on Saturday. I may need to have one more treatment before we head to Florida but I'm really impressed with the results!


    My project this afternoon is to sort and get all the presents into tubs to take to Mississippi.

    That's more of a challenge that it sounds as Grandma loves to shop! :-)


    We had our Christmas bowling party at bowling today.....lots of fun, gifts, and good food!


    Hi to everyone! I'm off to get things accomplished! Have a good Tuesday!

  • illinoislady
    illinoislady Member Posts: 39,835
    edited December 2013

    (((((((((TD)))))))))))))  Thinking about you and wishing you so well. 

    Peace and love

    Jackie

  • Daninayd
    Daninayd Member Posts: 21
    edited December 2013

    To GK-15

    I had my mastectomy at Northwestern Memorial Hospital. I also went for a second opinion at Northwestern to see Dr. Virginia Kaklamani. She is specializing in advanced breast cancer. She was very good and very thorogh at explaining my options. I am stage 1 but my body scans showed a 2 cm lesion on my illiac bone. We were very afraid of mets to the bones. I decided against a bone biopsy. Dr. Kaklamani told me to wait and monitor for any changes in the lesion. Her logic was that my tumor is slow growing and even if I had a met to the bones, her first option would be treat with Tamoxifen, which I am already taking. My first scan showed no changes and my next one will be in March of 2014. If this one is negative also, I can feel little bit better.

  • Timbuktu
    Timbuktu Member Posts: 1,423
    edited December 2013

    Dani, was your scan routine or did you have symptoms?  Did you have a bone scan or a cat scan?

  • camillegal
    camillegal Member Posts: 15,711
    edited December 2013

    TDbear I'm glad u'r home, now rest and heal--it's amazing what the do in one day.

    Dani u sound like u made a good decision with u'r med team too. And hoping everything is good.

  • lago
    lago Member Posts: 11,653
    edited December 2013

    Yay TDbear. You sound like you are doing well. Have fun with the ruffles.

  • illinoislady
    illinoislady Member Posts: 39,835
    edited December 2013

    If
    people only knew the healing power of laughter and joy, many of our find doctors
    would be out of business. 
    Joy is one of nature’s greatest medicines. 
    Joy is always healthy. 
    A pleasant state of mind tends to bring abnormal conditions back to
    normal.      Catherine
    Ponder

  • illinoislady
    illinoislady Member Posts: 39,835
    edited December 2013

    I have always been delighted
    at the
    prospect of a new day, a fresh try, one more start, with perhaps a bit of magic
    waiting somewhere behind the morning.
    J.B. Priestley

  • Daninayd
    Daninayd Member Posts: 21
    edited December 2013

    To Timbuktu:

    When the doctors first found two tumors on my right side, my husband who is physician, asked that I get the complete workup. Most oncologist usually order full body scans only if the patient has any simptoms to avoid any false positive findings.

    My left brest was initially cleared for being healthy. My oncologist did order a pet scan on the body to make sure that they have not missed anything. They found that bone lesion and then I had a CT with contrast, bone scan, MRI. In addition, the pet scan light up on my left breast and the doctors started to dig further until they found that I had a small IDC in my left breast. THis was the deciding factor to get double mastectomy.

    After the mastectomy, when I saw the patology report I wanted to cry. My both breasts were so diseased. It was the right decision to remove them. I had so many diagnostic tests done, some of them even repeated with better (high resolution scanners) and they still did not find everything. The patology report had more findings than the scans. I do believe that many women who later have a recurrence in the other breast, probably had it from the begining but it was never found. The diagnostic test are not 100% reliable as with anything in this life.

  • Timbuktu
    Timbuktu Member Posts: 1,423
    edited December 2013

    Dani, what a story!  And all of that with an onco score of 4?  Makes me wonder about the value of the oncoscore, which is a relatively new test.  Not many people are as proactive as you.  It is definitely a cautionary tale for all of us.  I fought to have both breasts removed but the surgeon was adamant...no, 

    I think our enemy is  not just the disease but complacency and passivity.  So glad you pursued the truth and hopefully protected yourself.

  • mdg
    mdg Member Posts: 1,468
    edited December 2013

    Dani - how horrible. I completely agree with you. I had a mammogram and it was "clear".  A few months later I found my lump. It was 1 cm by then.  Clearly it was there when I had the mammo but was not seen.  I knew after that experience I would never trust the tests so I did a BMX.   I already knew my body was prone to grow cancer and the cancer was not seen on a mammogram.   Seemed like a no-brainer on the BMX for me.  When I got final pathology, there was some DCIS and another small invasive area we did not know about.  I was glad I had the BMX.  It was the right decision for me. 

    The holidays are a busy time for all....take time to "live in the moment" despite the craziness.   Enjoy time with those you love.  Be thankful for all you have.  I wish health and happiness to all in the new year!!!!  Hoping the new year brings more treatment options for those still battling the beast.  Hugs to all!!!

  • ritajean
    ritajean Member Posts: 4,042
    edited December 2013

    I have my mammo and check in Peoria on Friday at Suan G. Komen and I'm anxious as always when it rolls around. I know it doesn't help to worry but I seem to be an expert in the field of worrying!  I haven't had any symptoms so I'm hoping all goes well.  I used to be able to get the results the same day but now I can't because I am more than 5 years out so I'll have to wait for the results until after Christmas!  In the meantime, I'll just try to keep busy which isn't too hard this time of year!

  • Daninayd
    Daninayd Member Posts: 21
    edited December 2013

    I agree. I was diagnosed at 46. I have had a mamogram every December since i have turned 40. All mamograms were "clear." In early April I found a lump in my left breast. Went to get another mamogram and ultrasound. The radiologist said that the left breast is fine but he wants to do personally the ultrasound. It is still surreal to me. He was laughing and joking in the room until his smile froze on his face and he said we need to do a biopsy. Both my husband and I knew right at this moment that it was bad news. He biopsied two suspicious masses. We did not know how bad it was. It happened on a Friday so we had wait two agonizing days for the results. My husband requested the results on Monday and the patologist, who did not know that I was his wife, started to read quickly the findings of two invasive ductal carcinoma. He said that he almost fainted. After the discovery of the right tumors, my radiologist said that he wants to do an ultrasound again on the left breast. He did not see anything abnormal but a week later the PET scan light up in the right and left breast. I had an MRI which confirmed a suspicious mass in my left breast as well. What a nightmare. During this difficult time, I was lucky that all of my tests were done quickly and I had the results quickly.

    It is still hard for me to understand why my both breasts were so ill. I eat right. I exercise. I do not drink and smoke. I do not have family history of breast cancer. My weight is stable and I breastfed my son. I am not sure what I am doing wrong that I ended up with four invasive tumors, dcis, lcis, and etc. I don't know what I need to change in order not get this wicked disease again. So frustrating.

  • ritajean
    ritajean Member Posts: 4,042
    edited December 2013

    Dani... my naturalist thinks that sugars and refined sugars feed breast cancer cells.  He is trying to get me off them and helping with a healthier diet.  It is very hard for me because I love sweets but I do pretty well until a major holiday hits.  I'm trying to eat more natural sugars....fruits mainly, and to replace granulated sugar with stevia.  I'm willing to try this!  There has been quite a bit of research done on this.