No Treatment or Choosing Only Specific Components of a Plan?

Thank you, Elaine. I feel like I've never recovered from the herniated disc / inflamed sacroiliac joint issue. The idea of dealing with the drug therapy for an extended period when my fatigue is already so severe is overwhelming. Needing to worry about making it to work adds to my concern. My part-time job is as an instructor with no available substitutes and no paid leave. With a regular job, you may be able to arrive at work two hours late or perhaps work from home on bad days, but if I'm not there, not only do I lose the income, but so does the facility where I teach. Fingers crossed that the surgeon will agree to my request.

V.

The other surgeon's medical assistant called and she will do surgery. I'm not 100% sure that she understood that I may not want to do chemo/ targeted therapy at all vs. the neoadjuvant/ adjuvant timing, but at least she seems to be considering my input instead of just looking to the standard of care without regard for my personal circumstances.

Thanks for the great discussion. I have an appointment next week with the oncology / BC surgeon, then meet the plastic surgeon the following day. To avoid any misunderstanding, I spoke with the BC's medical assistant and made sure the doctor understood that I may not pursue adjuvant chemo / targeted therapy. She confirmed that the doctor sees the TCHP protocol as the standard of care, but understands that my unique circumstances and personal decisions should be respected.

Although frustrated at being denied surgery if I wouldn't agree to the TCHP, I understand that surgeon's perspective. If you haven't been tired and in pain 24/7 for almost half your life and ended up broke despite doing everything "right," you simply can't understand why someone wouldn't pursue every possible option that might increase survivability. When I finally got the spinal injection after six months of misery, I remember walking upright into my kitchen (no Rollator, crutches or cane ) and noticing how bright the world seemed (and how filthy my cupboards were!). It was as though I'd been occupying this awful, grey space. How can you explain that to someone who hasn't experienced it?

I have a few good hours most days and schedule appointments accordingly. The surgeon sees someone with no obvious impairments and can't understand that a chronic invisible illness skews one's viewpoint. I would still recommend her and her team to people who want to maximize lifespan and won't want to deviate from the standard of care.

I think it's the surgeon's prerogative to not do the procedure since she disagrees with my decision. I recognize that the "standard of care" provides the best survivability numbers. Since I live near a major city, I have options. I can't imagine living in an area with limited services where I felt forced into a treatment plan that I didn't want. Anyway, I don't question that this surgeon firmly believes she's doing the right thing. I just don't think it's the right thing for me at this time. If cancer is found in my lymph nodes, I may still consider drug therapy.

Hi, Ladies (and the Occasional Gentleman),

After the warm welcome, I know I fell off the planet for a bit. As everyone here knows all too well, this process involves tons of research, soul searching and decision making, not to mention learning a new language.

I saw the BC on Tuesday. I expected her to confirm that I understood the risk I was taking by foregoing the neoadjuvant therapy, but didn't realize that was apparently the purpose of the visit. She is very sweet and caring; however, it's difficult & emotionally wrenching to explain to someone who hasn't been there how years of chronic and acute illnesses, shattered dreams & financial challenges influence one's decision.

I really liked the plastic surgeon I saw Wednesday. After discussing the pros and cons and given the condition of my breasts after losing 100 pounds, I've decided on a bilateral mastectomy with tissue expanders & implants. Unfortunately, the related minimum two hour weekly commute for fills in the 100 degree heat makes his location problematic. The BC's medical assistant is checking on another plastic surgeon with a satellite office much closer to me. Hopefully, surgery will be the second week in July. Thanks again for the input and support!

Talking about your sons' scripting is fascinating, ElaineTherese. Although I know it was fictionalized, I think I recall something similar in "Rain Man." The movie about how differently Temple Grandin sees the world was fascinating to me. I'm afraid that I lack the requisite patience to parent any child, let alone one with the challenges autism must present.

ChiSandy, YIKES! The weight of the breast pulling your SNB incision open is another reason why I've been reluctant to consider a simple lumpectomy. I had no breast pain whatsoever before my core needle biopsy, but now have little twinges along the path of the needle into the tumor every time I take my bra off and things head south so I'm wearing a sports bra until bedtime. My father had a similar digestive medical error that left him (and my mom as caregiver) with an ostomy bag for his final months of life. :-( I hope you enjoyed your vacation. I would so love to walk on an ocean beach again.

Chef127, I would have never thought about the surgery affecting your balance. I spoke with the plastic surgeon about being buxom since 9th grade and how I was concerned that I would look very unbalanced with a smaller bust now that I have a large tummy and lots of junk in the trunk. He said that he could fit me with a D cup implant, which I think would look quite proportionate on me.

Did you all ask to see photos of your plastic surgeon's work? I know vanity shouldn't be our primary concern and this isn't like shopping for a new outfit, but if I have to go through all this, it would be nice to have my bust line back up where it was in my younger days. The more conveniently located plastic surgeon has only a single example of reconstruction pictured on his website. One thing I plan to ask him is how many reconstructions he does in a typical year.

You must worry about your sons' futures. :-( I think someone like Temple Grandin is truly exceptional in being able to communicate the perspective of an autistic person to the rest of us.

I have taken a look at some of the TE messages. We tend to be more vocal about problems than successes so I read the posts from that perspective. I granted permission to the plastic surgeon to share my photos if I go with him for surgery provided that my face isn't shown. I don't have any distinctive traits, like an unusual birthmark, that would identify me and I know that seeing the photos is helpful for me as a prospective patient. There's an abundance of porn on the Internet so I don't think anyone would get their jollies looking at my saggy, senior bosom, but that's not really a deterrent for me.