Would you ignore doctor advice? If so, how far would you go?

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Sahila
Sahila Member Posts: 7
edited June 2014 in Second or Third Breast Cancer
 




I'm doing an encore dance with breast cancer.... last time (2005) left breast high grade DCIS, E&P neg, SLN biopsy (no nodes involved), had mastectomy, TRAM reconstruction, other breast reduced for symmetry...

 

I was told I had a 70% chance of it not coming back....

This time (diagnosed 2 months ago), right breast invasive ductal carcinoma (3.2 cm tumour, near chest wall), Her2 pos, E & P neg, grade 3 with lymph node involvement (5 nodes seen on MRI, biopsied, all malignant with one enlarged to 3.5 cm)...

Allopathic medicine's (slash and burn) recommendation is lumpectomy with lymph node dissection (tentatively scheduled for 25th October..

 

then adriamycin/cytoxin every 2 weeks X 4 cycles, with nuepogen injections daily for 5 days with each cycle
then weekly taxol X 12 weeks
then 1 year of herceptin
then daily radiation 5 days/week X 6 weeks...

I'm 54... currently homeless, jobless, single mother of 9 yr old ... I cant do this regime... I dont have the support to pull this off in these circumstances...

I'm right handed so lymphodema would be really incapacitating,

I cant get real numbers out of the doctors to do a (personal) cost-benefit analysis, and I'm not convinced that chemo etc will not do more harm than good - I've had several friends who died from chemo side effects/destruction of the immune system - pneumonia, heart attacks...

has anyone skipped surgery/chemo/radiation and only done herceptin and alternative therapies such as turkey tail mushroom, cannabis oil, melatonin, Vitamin D etc?

Would you please share your experience? Thanks...



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Comments

  • Jennt28
    Jennt28 Member Posts: 2,021
    edited October 2012

    With Her2+ IDC I took everything they could offer, except in the end I chose a mastectomy in place of rads based on - previous multiple x-ray history that probably caused the cancer to start with and the fact that chemo (Taxol) gave me pneumonitis (very rare complication) that started to come back when I started rads (so I quit and scheduled surgery).



    Her2+ BC is not good... It's better when treated with Herceptin AND chemo which have been proven to work synergistically...



    Jenn

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  • Sahila
    Sahila Member Posts: 7
    edited October 2012

    thanks for the feedback.... and good to see an Aussie here... am dutch/kiwi who lived in Brisbane from 96-04...

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  • Racy
    Racy Member Posts: 2,651
    edited October 2012

    Sahila, I am in Brisbane. Where are you now?.



    Are you working? I was not working but had no trouble going through treatment without support. A lot of ladies do it while working too.



    Your tumour is large and aggressive. Chemo will improve your chances of survival.



    I'm sorry you are homeless and hope you can find housing soon.



    Keep in touch.

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited October 2012

    Forgot to say... My oncologist has had me taking 2000 IU/day of vit D since I first met her back in January. She tests my vit D level every 3 months. It went from 30 something to 80 last week :-)



    Jenn

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  • Beesie
    Beesie Member Posts: 12,240
    edited October 2012

    Sahila, the following two websites might help you evaluate the benefit of treatment:

    Predict

    Breast Cancer Treatment Outcome Calculator  

    You can input the specifics about your diagnosis, and then see how much treatment will improve your odds of survival.  With an HER2+ cancer and extensive nodal involvement, you do have a serious diagnosis...so survival is the issue.  Of course, quaility of life is also an important issue; that's the choice you have to make. (Note that both calculators do assume that the patient has surgery so if you choose to not have surgery, your risk will be higher than what's indicated on these sites.)

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  • Sahila
    Sahila Member Posts: 7
    edited October 2012

    in Seattle, USA

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  • Sahila
    Sahila Member Posts: 7
    edited October 2012

    thanks, Bessie

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  • Sahila
    Sahila Member Posts: 7
    edited October 2012

    I have chronically low Vitamin D levels.... taking 20,000IU/day right now

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  • Racy
    Racy Member Posts: 2,651
    edited October 2012

    Sahila, I'm not familiar with the support systems in US, but can you see a social worker at your medical facility or a welfare centre? I'm concerned about your homelessness and it being a factor in your decisions about treatment. I think you could benefit from talking with a professional who could help you work through all the issues you are facing.

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  • DigitalCowgirl
    DigitalCowgirl Member Posts: 113
    edited October 2012

    Hi Sahila

    I am so sorry you are in this situation.  PLEASE get the help you need.  I found some local and national resources for you by googling " breast cancer help in Seattle for the homeless".  There are many orgs that will help.  I am sorry I can't paste the link in this post.  If you need more help please PM me. 

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  • Sahila
    Sahila Member Posts: 7
    edited October 2012

    have talked to a social worker at the medical facility, have done the rounds of most of the support services - many, many more people needing help than there are resources available... join the waitlists/queues!

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  • DigitalCowgirl
    DigitalCowgirl Member Posts: 113
    edited October 2012

    Hi Sahila

    I'm glad you've sought help.  Please keep us posted and keep reaching out.. Come here when you need encouragement.  Hugs

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  • Eileen0417
    Eileen0417 Member Posts: 16
    edited November 2012

    Sahila, as others have written, your cancer sounds agressive and you need all the treatment to improve your prognosis. You need to do it for your child. My heart breaks for your situation and I can imagine how overwhelmed you must feel with this new nightmare on top of other problems. But you must stay strong and not give up.

    Chemo can cause discomfort and cause some nasty side effects but it doesn't always. I had some of the nastiest chemo and I made it through. It was not fun but it was doable. You could do just fine with it.

    Did the social worker you talked to give you an idea of how long you have to wait till you hear something? It is her job to help you. Don't stop asking. Don't give up until you get the help you need. Time is important with treatment.

    Keep us posted and sending thoughts and prayers.

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  • Annie62
    Annie62 Member Posts: 1,081
    edited November 2012

    Sahila,

    I agree with some of the other posters that you should strongly consider the 'full' treatment. I wanted to add a comment about the LE. I think its good that you are aware of it and the risks, but I wanted to let you know that I had lymph nodes removed (20) and did not get LE (thankfully).

    If they are already advising the 'full' treatment you may be able to avoid the axillary dissection since the reason they check the nodes is to help determine the treatment plan.

    Good luck. I hope you can find some financial and other support.

    Annie

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