Should I Be Worried? Best friend went "natural" route ...

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beloved1234
beloved1234 Member Posts: 2
edited June 2014 in Stage I Breast Cancer

Hi All!

I am new to this forum, and I am writing to you because one of best friends' sister and I are concerned about my friend. I would really love some personal experience and or statistics about this because I do not know how to look.

I am sorry if the facts are slightly hazy: My friend, "Sally," at age 28 was diagnosed with breast cancer in 2007 and had a bilat masectomy with reconstruction. I believe that 4 or 9 LNs were found to have cancerous cells. I am not sure if she had them removed or not, she does have scars near her armpit.

She researched chemo/radiation and decided to opt out of both and go "natural." She modifed her diet, underwent some natural treatments, and psychotherapy. To my knowledge she never went in for follow-ups, as she had followed the natural route and basically revolted against western medicine (after researching effects of chemo/rad). After the reconstruction and alternative therapies she claimed that she had healed from the disease and basically refuses to talk about cancer, as she believes talking about it gives it power.

About a year ago she moved out of the USA and recently visited me and although she appeared to be in glowing health she was *very* thin (eating disorder and dieting are not part of the picture, I know that for sure).

 My question is, with a double masectomy, what are her odds of metastisis or reccurance. I REALLY want to believe that she healed herself the natural way, but I am also, of course, quite concerned for her.

 From your personal experience what insight can you offer me?

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    Personally, I would give your friend a hug, wish her well and just keep being her friend.  She sounds like she thought long and hard and made an informed decision regarding her own health and how she wanted to treat her cancer.

    Does her choice of not following standard western treatment with infected lymph nodes put her at a higher risk for metastisis?  Sure it does.  But she is willing to take that risk. But it is HER risk to take.   And you should respect that decision.

    Just my humble opinion. :) 

  • Carla9112
    Carla9112 Member Posts: 162
    edited October 2011

    Hi there - I'll add what little I can since I'm relatively new to breast cancer.  I had a bilateral mastectomy in August which had not spread to any LN's.  However, my oncologist recommended chemo therapy and radiation since mine was very fast growing - grew to six centimeters from end of May to middle of June.  They did gene testing and found that I carried the BRCA1 mutated gene (the cancer gene for breast and ovarian cancer).  So they wanted to treat my cancer agressively just to be safe.   I will add that my mother had breast cancer at the same age of me 29 years ago-had no chemotherapy or radiation- and she is in better health than me or my sisters.  I think she beat it because it was caught pretty early and she had a double mastectomy.

    In the case of your friend it would really depend on the type of cancer she had and the stage.  I just think it's kind of scary not to have any type of chemo or radiation.  I don't know what's involved with "natural" treatment" since I haven't heard of it.

    All I can say is that it's a personal choice, but for me I chose to list to the doctors and do what they were telling me because I wanted the best odds of beating this stuff.

    I sure hope your friend is going to be okay.  Being thin may just be a result of her eating habits now.

    Not sure any of this helped but wanted to respond.

    Best wishes to you and your friend.   

  • bluepearl
    bluepearl Member Posts: 961
    edited October 2011

    I have a girlfriend who did exactly the same thing, but she was 55 at the time. The young age and positive lymph nodes don't bode well for your girlfriend. I wrote my girlfriend a letter just in case the ONLY info she was getting was from alternative sources rather than science ones then I would consider that she was better informed. Ultimately, the decisions are theirs and what they can and cannot handle, but I felt that a good friend would make sure she had all the information at hand anyways. MY girlfriend is in her 6th year of recovery (2.5 cm, high grade cancer, sentinal node +, ER/PR+) with just surgery. 4 out of 9 postive lymph nodes puts your friend in a more serious position (unlike have 1-3 nodes positive) but who knows for sure?! My only suggestion and I asked my girlfriend this too, is NOT to make recommendations that others do what she did. Sometimes, we can beat the odds.

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited October 2011

    I would be worried.  You can check her stats out on Cancer Math.  It will give you her odds for "surgery alone". 

    However, there is nothing you can do.  Hopefully, she will be one of the lucky ones.  Steve Jobs thought he could beat the odds too.  He lost.

  • maltomlin
    maltomlin Member Posts: 343
    edited October 2011

    Hi

    I had a friend dx Feb 10  with Her2+ and postive nodes(she wouldn't say how many nor details of her path report other than grade 3). She refused all treatment other than mastectomy. Basically she was scared of having chemo despite my arguments for it. She just wouldn't talk about it.

    She was dx with skin mets in April this year which quickly progressed. Still she refused treatment. She died in August. It had spread to her lungs and brain.

    It's so sad, You have to respect their wishes but for my friend I can't help but think 'what if'.....

    Mal 

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited October 2011

    I don't think any of us can really answr your question, as we don't know the stage of her cancer, the hormonal characteristics nor the HER2 status.  Breast cancer isn't one disease, it's got many characteristics, some more deadly than others.

    If she had DCIS, she will probably live a long normal lifespan.  If she was Stage IIIc and HER2 +, then without treatment, she's likely to face a metastatic recurrence.  If you are right and she had positive lymph nodes, that would put her on the more dangerous end of the spectrum.

    Bur, you just can't tell. A friend of mine's mother had a small, stage I tumor, completely curable with treatment.  She didn't even do a lumpectomy, instead, did some sort of body wrap and grapefuit seed thing  She died a terrible death only two years later.  It was a waste.  Some woman do nothing but surgery and survive and then they can point to natural healing, when it was really just luck that they had an indolent tumor.  This is a strange disease.

    Your friend is a grown adult and you can't change her mind and get her treatment she doesn't want to get.  She may be thin just because she wanted to lose weight.  If it's in her liver, than maybe she's think because she can't eat - did you eat with her? She wouldn't be able to take more than a few bites if it's advanced.  But, she might also have a swollen belly.  You said she was thin yet glowing with health so I am thinking she just lost weight.  Maybe cancer woke her up to exercise and healthy eating.

  • LtotheK
    LtotheK Member Posts: 2,095
    edited October 2011

    I'll share with you what my radiation onc did.  There was a young woman in my clinic who was refusing all allopathic treatments.  He was worried, and told me about it.  I recommended I talk with her, and see if I could encourage her.  He told me in his years of practice, it is not worth the effort.  It made him sad, but the old "you can't change people" is true in these cases, too.

    My aunt has a great friend who refused all treatment, and went from Stage 2 to 4 in a few years.  No one has the answers to stop all cancer, that is for danged sure.  Could she have been helped?  I believe statistically, yes.  She might have lengthened her life.  The stats seem to prove so.

    Despite being super-frustrated at what I deem her arrogance and misguidedness, my aunt and I stand by her, and celebrate her independence and fortitude.  It takes all kinds of people and on some level, I'm grateful for that, even when I believe it is misguided.

    It is impossible, as folks are indicating here, to give you hard answers, especially since we don't know the full profile.  Node positive patients, however, do have a higher chance of recurrence with and without treatment.  

    One thing I think is important to clarify:  cancer is an elusive disease without cures or answers at this time in medical history.  One can never say they "cured" themselves naturally or otherwise.  Doctors are still trying to figure out why it happens--to pretend we have the answer is, in my mind, a disservice to the women who go through this disease.  

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited October 2011

    Is your friend worried?  I would try to mirror her degree of concern.  Yes, I am serious.  Why?  Because if she is hardly concerned about passing on the conventional treatments four years ago and feels her natural lifestyle has reduced her B/C risk, then what good will your worry do?  If anything, it will put a strain on the friendship and you'll wind up with something stress-related over it. 

    Local recurrence is given a probability of 2-5% in women who have Mx,  Your friend's young age and positive nodes do seem to point toward some level of aggressiveness, and like others have said there may be a greater risk for her to have the cancer metastasize to elsewhere.  Hard to calculate that risk, but almost any doctor would have informed her of the increased risk at the time of Dx.

    Maybe the best you can do is to encourage her to at least do some follow-up, just for general health reasons and because the routine blood screenings can often indicate if something is awry.  A number of women who have surgery alone do survive.  A number of women who "do everything possible" do not.  You just never know which way the cookie is gonna crumble.  Good luck to you and your friend. 

  • dreaming
    dreaming Member Posts: 473
    edited October 2011

    The hardest thing for me at work in the cancer center, is that somebody refuses treatment,when they can be treated. I have seen women that rather die than to have a mastectomy and or chemo. when there is not other option.

    It is a personal choice,but I know the odds, is to have hair, more important than our life?

    I am the one that explains and makes them sign that are refusing treatment and what are the risks.'

    I have seen young women that they only need a mastectomy and radiation, or not even that. It is different from a person that plainly refuses treatment.

    I would do anything  that will give me more time with my loved ones.

  • edwards750
    edwards750 Member Posts: 3,761
    edited October 2011

    What a tough spot you are in. I dont know anyone personally who hasnt followed the "traditional" treatment plan with the exception of a friend of a friend who did go the "other" route. Her cancer came back after 5 years. They removed the mets and she was okay until recently now they have shown up in her spine. Needless to say everyone is devastated. It would be easy to say it is because....but as one person said so well cancer is so unpredicatable...women do everyone right and it still progresses and the reverse is also true. They dont know why we get breast cancer so I am sure they are just as stupified as to why some treatments just defy the odds. Why do people who dont smoke or havent been around smoke or smoking get lung cancer? Happened to a friend in my jazzercise class. Perfect health but a cough came out of nowhere not due to a cold or allergy and she was constantly fatigued. Finally went to the dr - Stage IV lung cancer. She passed away years later when the cancer went to her brain. Unexplainable. Doctors are now saying 60% of the lung cancers they are seeing are from people who dont smoke. It is a total crap shoot. I have early stage breast cancer followed by a lumpectomy and radiation. I am relieved for now because my mammogram was okay(first since DX) but confident I will always be okay -no. We all have to look over our shoulders for the rest of our lives because we have the C word. Your friend has the right to decide and I agree with others it is her decision and her life. Hard for you...just be there and be her friend. Keep us posted. diane

  • Pessa
    Pessa Member Posts: 519
    edited October 2011

    I have a friend who was diagnosed with node +, ER+ HER+ BC about 5 years ago.  She had a lumpectomy but refused chemo and rad because she was suspicious of the "medical establishment" and believes in alternative medicine.  Cancer recurred.  She went to an alternative medicine practitioner and started on numerous supplements and other treatments..  cancer has progressed and is now in her lungs.  She has now agreed to receiving chemo.  Can never know for sure if she was "curable" several years ago when initially diagnosed.  It is quite obvious, however, that she is  suffering more (trouble breathing, numerous pleural taps) now than she would have suffered had she received chemo/rads.  Very sad. 

  • beloved1234
    beloved1234 Member Posts: 2
    edited October 2011

    Thank you to all who posted on here. I really appreciate it.

    My mother died from this disease when I was a child and this friend is thinking to start a family w her husband soon--- I think this may be way my emotions are coming up!!



    As you all posted here, I will just respect her choice and support it. I can't change her mind and I can't change the past...... Hope she is one of the lucky ones.



    Love,

    Beloved1234

  • peggy_j
    peggy_j Member Posts: 1,700
    edited October 2011

    beloved1234, I'm sorry to hear you're in this tough situation, especially with your mom's experience. Not sure if this is helpful, but there are caregiver support groups. Maybe it would help to go to one once to help feel connected. (I'm not a "support group" kind of person, so I've been surprised that's it's helped me feel less isolated, and sometimes even get good advice.) good luck and hope you're able to take care of yourself in this stressful time.

  • Kaara
    Kaara Member Posts: 3,647
    edited October 2011

    I understand your friend's need to reject radiation and chemo in favor of alternative (natural) therapies.  It is possible she moved out of the country to pursue some of these therapies as they are not as readily available in the USA.  With the right nutrition and supplements, the body has the power to heal itself.  There are many people who are cancer free from utilizing these therapies, and I pray your friend will be one of them.  The fact that she is very thin could mean that she is following a diet that promotes only raw foods and juices.  If she is content with her decision, then it is the right one for her.  Send her prayers and positive energy!

  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited October 2011

    Moring....I think Elimar is right....It isn't going to do you any good to worry about your friend...  It sounds like she is determined to do just what she feels is best.  She must be scared to death to try chemo or any other treatments. 

    Those two are standard treatments for node-positive cancer... I was also afraid to have chemo, & I thank God, I didn't really have to have it. 

    My Daughter's older friend had a lumpectomy same time I did.  But she refused any further treatment, even with positive nodes.  During the next year, she went to see "John the god" in Brazil I think....He touts himself as being able to help cure ANYthing... But she wanted to believe he could cure her. 

    So a year later, she now has mets to the bones, lungs, and she is just spiraling downward..... She is being aggressivively treated with chemo,  but she says it is too late.   She says it is God's will.  She says she has had a good life!  Her family is doing their best to figure out what to do next, because her hip just broke, & she doesn't know how that happened.   It just makes me want to cry, for her, and my Daughter who loves her and her Husband so much.

    You know, there is nothing you can say to her, except be there for her.   It's just like dreaming said...There are sooo many treatments available to us, & to see or hear of someone turning their backs on them, is just not in their best interests! 

    She could do them, and THEN keep on doing alternative meds, or whatever.  But they shouldn't take the place of standard treatments, which have proven to either save, or pro-long our lives.  It's just hard to stand back, and watch this happen to someone you care about...but I don't think there is nothing else you can do, except love her.

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