Sisters with IDC with different treatments and outcomes (LONG)

cheekymonkey
cheekymonkey Member Posts: 86
edited June 2014 in Triple-Negative Breast Cancer
Hello everyone...I have not been to this board in the past two years, but I will say that this place pretty much saved my life. I have been reading everyone's posts, and have wanted to comment, but thought it would be better to start a new topic, and let everyone make up their own minds on this. I just want to tell you all about my sister and I, and how differently we approached our cancer, and how different the outcome was.I was diagnosed with Stage 3, Triple Neg, IDC in February 2005. I was 46 years old. My sister, who was 51 at the time, was also diagnosed with Stage 2, Triple Neg IDC in May of 2005.I had already been researching cancer and chemotherapy, because our mother was diagnosed with Ovarian Cancer in October of 2003. Also, all during this time, my sister owned a Wellness Clinic in my home town in Wisconsin with her husband, who is an M.D. (She is also a registered nurse). Her whole life was about alternative medicine. One big difference between my sister and I, is that I live in a big city (Los Angeles) and have access to excellent doctors. Julie lived in a small town, had an HMO, and a terrible, terrible doctor. I was also very happily married, she was completely miserable in hers. So there are a lot of different factors involved. Up until the time of my dx, I was also a BIG fan of alternative medicine. I couldn't stand going to western medical doctors, but knew I had to for things like my yearly PAP test, etc. When I was dx'd, I didn't even have a doctor to go to! I knew someone in Los Angeles who also had gone through this, so she referred me to someone, who eventually directed me to Dr. James Waisman at Breastlink. I am so thankful, too, because he is one of the most incredible doctors I've ever known. I will be eternally grateful to this man for saving my life. He fit me in right away (the next day! And also started me on all of the PET/CT scans, MRI's, etc.). He wasted no time. He also spent two hours talking to me and my husband at our first meeting. I was SO SCARED, and kept asking questions about alternative medicine. He basically explained it to me like this:Triple Negative Cancers respond to chemotherapy MUCH better than Estrogen positive tumors. He said, "Forget the alternative stuff for now. You have to get RID of this first and foremost." He said that I could always use alternative medicine after my tumor was "gone". He was SUPER positive and NEVER, ever did he suggest that I was not going to be successful in overcoming this. My tumor, when I found it, was 7 cm. It had spread to my lymph nodes (I believe there were 6). Julie's tumor was only 2 cm, but hers had also spread to her lymph nodes (I think she had 13 positive). About 4 days later,  I started chemo.  He had to shrink my tumor so that when they did the mastectomy, they could get clear margins. I had Adriamycin/Cytoxan. After 8 weeks, my tumor had shrunk down to 2 cm! I had to change at that point to Taxotere due to how hard it is on your heart, but noticed after two weeks that it started growing again!!! We did an emergency mastectomy, and then more chemo after that (Gemzar and Cisplatin). Then rads after that. I also had a prophylactic mastectomy on my right side (which they found pre-cancerous cells in!). SO, I hit it hard, but I'm still here.My sister took a different approach. She started out just getting a lumpectomy. She didn't want to lose her breast if she didn't have to, and she didn't want any chemo. She did try something she referred to as a "gentler chemo", where they lower your blood sugar to open your cells, and then put 1/10 the amount of chemo in so you don't have terrible side effects. Well, it was SUPER hard on her body (like putting her in a diabetic coma), and her hair thinned a ton. She was always very tired after doing it. She also took tons of supplements, Avemar, Vitamin I.V.'s, Essaic Tea, Shark Cartilage, Mushrooms, you name it. Then in December of 2005, she found that she had a recurrence, so she started chemo.She was also really sick with something like fungal meningitis (something her doctors could not figure out), and even though she was running a fever of 102, her onc. said she should still get chemo. In January 2006, her kids and my brother and I all had to come home, because she was in ICU and they didn't think she would make it. Luckily, her husband noticed something and brought it to the other doctor's attention, and they figured out what it was and started treating her with anti-fungals. Fortunately, she started getting better. She then decided to get a mastectomy. Unfortunately, they could not get clear margins!  So she tried more chemo. Her oncologist basically told her that she probably only had two years to live (He was my mom's doctor and told her the same thing!). Put her on AC, and she was so sick she could hardly stand it. She tried so many different ones, but each one made her more sick.She came out to see my doctor, and he tried so hard to help her, but nothing was working. I don't know if it's because she just waited too long to do anything, or because she hated chemo SO MUCH and cried every time she had to get it, or that her body had just become too weak from the other illness she had, or because she kept bouncing back and forth between no chemo and taking chemo, or because she was taking so many supplements WITH her chemo....but nothing was working. It spread to her lungs, and in April of 2008, my beautiful sister and best friend passed away. Maybe being unhappy with her life made her just give up. I don't know. What I do know is that I just had an appointment with my Oncologist, who said I am basically "Cured". He said the rate of recurrence in a TRIPLE NEGATIVE patient after 4 years from the day that you finished your last treatment, is less than 1%.So, take from this story what you will. I don't know the answers, or why things happened the way they did. Honestly, she SHOULD have been the one to survive. She has always been super healthy, strong, athletic, was never overweight, barely drank, and had no vices! Her funeral was amazing...the police department, the EMS crews, all of the nurses and doctors at the hospital, the firemen...she had over 400 people there saying goodbye. Why didn't she make it? And why did I? Was it because Dr. Waisman was right in saying to hit it hard in the beginning, and save the alternative stuff for after your tumor is completely gone?I'll let you guys be the judge. I just think that if alternative medicine helped that many people get rid of their cancer, we would be hearing much more about it. I have an aunt and two cousins who were also diagnosed, my cousin and her mom about 30 years ago, never having a recurrence, and my other cousin just recently went through it. Oh...and the weird thing is that I was found to be BRCA 2 positive, and my mom and my sister were negative. My mom passed away this past April, almost one year to the day after my sister died.So, I for one am VERY happy to put this past decade to rest (My father also had Alzheimer's and passed away at the end of 2006). I'm glad to see it go, and I'm looking forward to starting a New Year and New Decade on a high note. Good luck to you all, I wish you all the very best for 2010 and beyond. Let's make this decade a great one!!! Sending you all much love and wishes for good health!
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Comments

  • Morgan513
    Morgan513 Member Posts: 664
    edited January 2010

    Wow Cheeky, that's a moving post.  I am much like you.  I was very much in to alternative medicine but when it came time for treating my bc, I went with conventional treatment and hopefully, I'll be a long-term survivor like you!  When I was first diagnosed, I read a story (really a random little story in a magazine) about a woman with anal cancer who chose to use alternative treatment.  Her friend also was diagnosed a couple years later with a more aggressive form and a later stage but chose conventional treatment.  The gist of the story was that the woman who did alternative treatment had a recurrence and was fighting for her life while her friend remained cancer free.  The writer of the story was the woman with the recurrence.  She said that she wished she had chosen differently.

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  • 123Donna
    123Donna Member Posts: 49
    edited January 2010

    Cheeky,

    Thanks for sharing your story.  

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  • living4today
    living4today Member Posts: 215
    edited January 2010

    Thank you so much for sharing your story.  I, too, like to go alternative when there is a choice, but to me with TN there was no choice but surgery, chemo and radiation.  Chemo made me really sick, but I figured I had a one chance shot and I was going to do everything possible...now looking at incorporating more wise healthy choices...thanks again.

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  • Frenchie
    Frenchie Member Posts: 37
    edited January 2010

    Inspiring and strength giving story.  Thank you.

    Interesting you were given Cisplatin.  Lance Armstrong's defeat of Stage IV Mets involved significant dosage of this chemo. 

    Heart felt thanks again.

    James 

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  • carolinachick
    carolinachick Member Posts: 387
    edited January 2010

    Cheeky, thanks so much for sharing your story.  It's especially uplifting as I near my one year anniversary of diagnosis.  What a hard past few years you've had.  I'm looking forward to the day that I am four years out and can be considered "cured."  Thank you again.

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  • 11tyBillion
    11tyBillion Member Posts: 96
    edited January 2010

    Thank you so very much for posting this!  This whole cancer thing has taken me in to the hospital more times in the past 2 months, than in the last 39 years of my life.  I have always been more of a natural person when it comes to treating things, but with this TN cancer thing, I decided that going whole hog in the beginning was probably going to be the best way to go.  My mom, also a BC survivor, does not agree with my chemo choice, and thinks I should go more natural with the treatment ... but why risk it? I have so many more years ahead of me that I want to enjoy!

    No, I am not thrilled about making the choice to pump tons of various toxins into my body, BUT, I am happy to think that 20 years from now I could be cancer free and watching my little boys, all grown up, going ot school, getting married, having babies of their own ... those happy thoughts ALONE give me the power and strength I need to walk into that chemo appt. tomorrow morning to "git 'er gone!".

     I am going to refer some of the ladies on the starting chemo January 2010 board see your post ... I found it so encouraging!

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  • Sido
    Sido Member Posts: 234
    edited January 2010

    Thank you Cheeky for telling your story.  I finished chemo a few weeks ago and just started rads today.  I've been feeling very down about the after-effects of my tx (no hair, weight gain), but your post reminded me why I'm doing all this and why I need to see it through to the end.  I want to be like you...four years out and no recurrance.

    I'm on the "starting chemo in October 2009" board and I'm going to mention your post.  Sometimes it's hard to keep going when your body has been punished for so long.

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  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited January 2010

    Thank you Cheeky for your wonderful post.  You have given this TN woman such a boost of encouragement and motivation.  I just finished my last tx on Monday and I am looking forward to years of health and being cancer free.  I have to do rads so I am not yet finished.  I plan on utilizing some of the alternative stuff after I finish rads. 

    Anita

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  • MsBliss
    MsBliss Member Posts: 536
    edited January 2010

    Dear Cheeky, I am so sorry you lost your dear sister.  Thank you for sharing both your stories. 

    I do wonder something though.  It sounds like your sister had Insulin Potentiation Therapy.  Well, IPT is problematic because insulin has a tendency to encourage cancer growth, this may have been the source of her recurrence.  I have met two patients that have successfully arrived at a stalemate with their cancer through IPT, but they did not have tnbc, which is different. 

    Tnbc, as we are now discovering, is stem cell like in nature.  That is what makes it so vigorous.  But chemo does not kill stem cells.  The truth is that chemo shrinks tnbc tumor masses, but that doesn't mean it kills the stem cells.  Too many of us have experienced, or known someone for whom their tumors or cancers shook off chemo like a dusting of snowflakes and came back more vigorous than ever.  If it is hard for standard chemo to knock these out, imagine how unlikely it might have been using other methods.

    But if your sister did the IPT, who did the infusion?  Where did she go?  Were they experienced with this method? Is it possible that she was being treated by someone who did not infuse her correctly?

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  • tibet
    tibet Member Posts: 545
    edited January 2010

    MsBliss

    From empirical studies, they show TN responds better to chemo than others because TN cells divide faster. I don't know about the sterm cell or not but talk about the studies they did which is evidence based. Even the breaking news from SABCS confirms chemo benefit in BC.

    Ofcourse there are always exceptions, for example, some TN don't respond to chemo but some exceptions must not be the reason to rule out the benefits of chemo for TN. That's what multivarient stats studies are about....many TN have PcR, more than other types BC responses to chemo. When you say, chemo shrinks TN tumor sizes, when the tumor shrinks, it means the some cancer cells are died, otherwise how does shrink of tumor mean? With PcR, means, at time of surgery, there are no tumors left and they can see dead cancer cells.

    I also have a friend who has two aunts with BC at the same time. One aunt had chemo and is alive today after 25 years and the other did not take chemo and not around. This friend got TN bc last year and she had chemo because she saw the difference in her two aunts.

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  • Karen3
    Karen3 Member Posts: 307
    edited January 2010

    Hi MsBliss - my chemo treatment has been withdrawn because my triple neg tumour was not responding to chemo. You are right though - triple neg cancers which do respond to chemo respond really well. I had neo adjuvant chemo (I had chemo while the tumour was in situ and regular MRI's to see how the cancer was responding). I have just had the tumour removed and if the margins are clear I will be having rads soon.I have to say that as a 'chemo resistent' triple neg I now feel vulnerable and the only trials available in the UK are for those with mets. But, I am pleased I had chemo and I wouldn't have had it any other way.

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  • rinna40
    rinna40 Member Posts: 357
    edited January 2010

    Thanks for the story. It makes it much easier to hear a positive outcome story having just finished chemo and rads. Being TN has been scary for me, but I love the idea that you can be virtually cured. I can't wait for the 4 year mark. For me that will be New Years Eve, 2013. I want it so bad I can taste it. 

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  • tibet
    tibet Member Posts: 545
    edited January 2010

    Karen3

    When you say you had neo chemo when the tumor was in-situ. In situ means you had DCIS which ofcourse does not respond to chemo as all DCIS are not responding to chemo. In-site tumors are pre-cancerous and they do not divided yet so chemo cannot target them. Surgery can remove in-situ tumors.

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  • Karen3
    Karen3 Member Posts: 307
    edited January 2010
    Hi Newalax - No I had a core biopsy and was told I have invasive ductal cancer on 8th September. When I said in situ, I meant that I was given chemotherapy before the tumour was removed - but the cancer is invasive. Sorry, I can understand the confusion! Anyway, they recommended chemo first because they could monitor how the cancer responded to the chemo and they would not be able to do this once the tumour was removed. The idea being that if the mature cancer cells in the tumour reponded well, so would the immature circulating tumour cells (CTC's) which may be present in the blood stream. They explained that since they had no targetted therapies for triple negs, they had to get the chemo right. So I began chemo and was having MRI's approx every three weeks. Thet started me off on 26th September with a combination of chemo cyclophosphamide (Cytoxan) and Epirubicin (Ellence). I had two cycles of this but the MRI showed no response so they switched me to Taxotere (docetael) but again no response so after one cycle of this I had one cycle of Taxol (paclitaxel) but now the cancer seemed to be growing. My last infusion was 26th November and was then discontinued following another MRI. The Oncologist said that the cancer appeared to be chemo resistant whcih was a devastating blow - especially since I was under the impression that triple negs cancers 'mealt away' with chemo! I have just had a lumpectomy on 4th of January because they have to wait between 5 and 6 weeks after chemo before they operate. I have been told that my biggest threat is not the tumour but any random tumour cells which may not have been dealt with by the chemo. For this reason, the breast surgeon felt that more radical breast surgery would be unnecessary at this point; although he said he was perfectly prepared to remove one / both breasts if I wished. The surgeon just felt that any amount of radical breast surgery would not deal with my biggest threat now and would only put me through what could be unneccessary surgery. Anyway, I have to see the surgeon again in a week or so and then, if margins are clear, I am going for radiotherapy. I suppose I feel very 'vulnerable' right now with a lot of 'what if's'. If they only have chemo to treat triple negs what happens when it turns out to be chemo resistent? Cry. Anyway, I am trying to get on with life and trying to remain positive - somethimes that's not easy though. I'm sure you all know what I mean XX.
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  • angelsabove
    angelsabove Member Posts: 363
    edited February 2010

    Gotta bump this one too.....here goes sisters

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