Recurrence for Mom?

[Frustrated]

A year ago Mom found a lump on her right breast, and one enlarged palpable axillary node on the same side. We went and got her a mammogram and ultrasound, and were told it was almost certainly a malignancy. I bought Dr. Susan Love's breast book, and I read it cover to cover.

I found a surgeon who specialized in lymph node mapping. Mom had the required chest films, and bone scans, etc., and there was no evidence of distant metastases. Mom's heart was in good shape for her age, and it was understood that she would have an excisional biopsy of the mass, along with a sentinel node biopsy. After the surgery, the surgeon explained that he had decided to simply remove the single enlarged node, and did not feel that further dissection was warranted, as Mom was elderly and would simply need continued Tamoxifen therapy. I asked BEFORE the surgery what would happen if the cancer turned out to be something other than ER/PR positve. I was told not to worry, because "it would be hormone sensitive."

Well surprise surprise, as the pathoulogy results indicated an ER/PR negative, and a HER2/neu positive+3 status to add insult to injury. Now, I was really upset. The surgeon's response to the pathology results was, "Gee, that's really weird." I took Mom for an oncology and radiation therapy follow-up. The first thing they asked was whether there was lymph node involvement. When I said, "We don't really know," they were puzzled.

Mom went through weeks of radiation therapy, and had continued MRI studies looking for metastatic disease. I asked that she receive Herceptin therapy because of our lack of knowledge regarding accurate staging, but was denied because there was still no evidence of spread. I guess not knowing is the same as not finding?

Now, almost a year later, we found another enlarged axillary node on the same side. Fine needle aspiration confirmed our worst fears that it was positive. She has now received the axillary dissection she should have had during the original surgery, and there was extensive node involvement. The irony is that because the radiation treatments did not cover ALL of the lymph nodes in the field, it is entirely possible that the disease was there all along, but went undiscovered.

Now we are behind the eightball, and I am relying on the skill of her oncologist to help her survive for any reasonable length of time. But again, we run into a road block. The oncologist wants a PET scan, but Medicare (and her supplemental insurance) refuse to pay for it. So we have to settle for a bone scan and CT's. He plans to start Herceptin as soon as he gets the results of the studies.

I am so frustrated that Mom was not treated properly to begin with, and I find myself unwilling to trust what ANY of her doctors tell me or suggest for treatment. It seems that if you are elderly and develop breast cancer, you are going to receive a different level of treatment than a younger woman. Don't get me wrong. I know that Mom cannot tolerate the kind of sledgehammer chemotherapy that other women can, but her heart is strong, and she should have at least had the same consideration during the initial stages of diagnosis and treatment. I don't know what direction to turn now, as I am afraid that I will allow another mistake to eliminate any chance of her having successful treatment. Any suggestions will be greatfully accepted.

[Fontaine]

I can certainly understand your frustration and upset but, as I'm sure you know, continuing it won't do you or her any good. (Seems unfair but that's just the way it seems to work.)

From outside looking in, you could either sue the surgeon for malpractice (or at least consult a malpractice attorney about it), which doesn't seem the most fruitful use of your time, or arm yourself with as much information as you possibly can. "Fire" any doctor who doesn't welcome your desire to act as a partner in your Mom's care and find one who will. Personally, I'd opt for younger doctors if given the chance unless I knew that older ones were flexible in their perspective and gung ho about staying up-to-date with the latest and greatest. While I'm 59 and feel cozier w/ doctors my age, younger ones are more likely to have received more up-to-date training and be more enthusiastic and less cynical.

There is a ton of information on the Internet and there's also Amazon.com for anything you can't find in the library in the way of books.

I'd also check w/ your Mom's insurance company to see if they have case managers or special programs for breast cancer or even cancer so you have someone to talk to (and badger if necessary). Often insurance companies will give in if they aren't given a logical reason to deny a treatment or are badgered (though politely) enough. It's the squeaky wheel deal. If you throw data in their face and keep putting it there, it makes it virtually impossible for them to refute. Even if they can't be sued, they are concerned about their reputation. I'm not sure about Medicare but imagine the same tactics (persistence) would likely work with them.

Some of the things you CAN do to help your Mom relates to the immune system and diet. I've got some fascinating resources related to that. In fact, I think I'll post info on it. That's just one small thing you can find out about that can make a difference.

You don't have to simply put yourself at the mercy of the medical community and hope for the best. The first step is to convince yourself of that and then go from there.

My very best wishes for both you and your Mom!

[Frustrated]

Thanks Fontaine. Your comments are appreciated. As far as bringing legal action against the surgeon, I can say that I have never seen a plaintiff attorney win a "resurrection" yet. I will, and have spent every minute doing my homework and following up on the plan to treat Mom as best we can now. It is interesting to watch her physicians perk up at my description of the screw-ups. I suspect they are emailing each other with a "heads up" for the nut who is all bent out of shape at hi Mom's care.

Oddly enough, and to my surprise, Mom's surgeon actually sat down with me and admitted that he had made a mistake by not doing the sentinel node biopsy during the first surgery. It's just hard for me to listen to a physician say that everything is fine one second, and then months later say "It would be nice if we could all live forever." That is what makes me so damned mad.

He simply assumed he knew what cell type he was dealing with on the first go round, and then placed a bet that my Mom will have to pay up on, not him.

I have been doing all I can to boost her immune system through diet and supplements. I have also been giving her green tea extracts containing high levels of EGCG as well as having her drink lots of fresh brewed green tea each day. If the research is accurate, and green tea polyphenols truly act as tyrosine kinase inhibitors, they may help at some level.

I spend about two hours each night reading the latest research on the Internet, while being very careful about the source of any information I might use.

At this point, I am hoping/relying on the action of the Herceptin she will soon be administered. It is truly an amazing development in the complex area of cell signalling pathways, as I feel Lapatinib will also be. I also do a lot of praying. I only wish that age was not such an influence on the way physicians make their decisions about someone's treatment course in the beginning. Having dealt with cancer before, I know that you often get only one chance to do the right thing. If you make a mistake at the outset, it can be very costly. Thanks again.

[Bonnie]

I, too, understand your frustration. Last week I accompanied my mother-in-law to the doctor for an annual physical. The doctor obviously doesn't believe in mammograms for older women. In fact, it sounded like she just thought they should die if they got breast cancer, which is against everything I believe in. This was a young doctor and it all sounded like a cost-cutting method because she also wanted to prescribe Fosamax for her bones without a bone scan to determine if she really needed the medication. My mother had breast cancer at 82 years of age and she had surgery and radiation and didn't have to die of breast cancer. Unfortunately, shortly after I was diagnosed, she did die of a heart attack. When I told my sister-in-law that a mammogram wasn't ordered, here is what she replied. She works in the medical community.

"I noted that a mammogram was not ordered, however was not surprised because I have noted a change in the thinking of modern medicine along the lines of 'Don’t treat to the maximum if the disease will not shorten the person’s life expectancy.' On one hand it makes sense in terms of use of resources and money. On the other, it incenses us with the instilled ethical issue to preserve life at all cost. It’s a highly debatable topic in this country!"

Frankly, I'm outraged at this doctor's attitude regarding breast cancer treatment in older women. It is a horrible disease to die from and there is no need. I feel fortunate that I had a very knowledgable onc. but when I started down this path, I really had no idea what to look for in a physician or treatment and there have to be many like me that end up with insufficient treatment or incorrect treatment. In fact, I started out the wrong way too with no sentinel node biopsy, only an excisional biopsy, but, like I say, my onc. knew about that and sent me for the biopsy. In fact, my first surgeon wouldn't even give me the pathology report and at the time of surgery he told my husband not to tell me it was cancer. Of course, my husband did tell me. He knew I'd want to know. Again, luckily my husband was able to get the path report through another physician. The one thing I've learned is that you have to learn things you don't know anything about and, hopefully, find someone you can trust to help guide you.

Bonnie