My wife is in the same situation. Though her tumor is invasive there is no evidence by palpitation that lymph nodes are affected. Tamoxifen oral is being used to contain the tumor and it has softened and reduced the tumor. Her oncologist will not pursue the topical Tamoxifen as it may not catch any cancer cells that might be in blood stream or lymphatic system. As a cancer patient my wife who is 77 and not a candidate for surgery due to overall health is willing to take that risk. I emailed Dr. Khan (skhan@nmh.org) who was involved in the study but he took the same position. To me as a logical thinker such a position defies logic. I think we should pursue this until we find someone who will help us. It may be a money trail problem. I considered trying to make a topical by dissolving a tablet in dmso but I found that the topical has been through some process of metabolization. I am wondering if my congressman could find some help through NIH or other avenues.

I asked my MO about topical Tam on my 6 month follow up visit. I quit oral 20mg after 2.5 yrs. She said she was good with me dis-continuing, but had never prescribed the topical. She was concerned about the local vs systemic benefits of the topical form and that it may not be effective against mets. She assured me that a local recurrence can be "taken care of" but mets are the main concern. It would be nice to have an alternative for sure. Right now, I am considering myself done with TX and pray that I don't ever have to deal with it again. Trying to change my lifestyle to eat a healthier diet, staying away from parabens as much as possible, organics when possible, cut back on alcohol intake, taking baby aspirin daily, turmeric/curcumin, exercise more and be HAPPY!:)

I sent the following message to the NCI;

My wife age 77 has invasive ductal carcinoma but is considered too high a high risk for surgery. The medical oncologist is controlling the carcinoma with oral tamoxifen. In fact the carcinoma has reduced in size from 3.5 cm to 2.5 cm and has softened somewhat within a few months of therapy. I asked the oncologist to look into availability of tamoxifen gel but she dismissed it as experimental and primarily for prevention of recurrence. My wife is experiencing some side effects with the oral tamoxifen and since her overall health is quite fragile I would like her to be able to try the gel. One argument against it would be that if cancer cells are in the lymph nodes or beyond the topical gel wouldn't reach them, however lymph node palpitation is negative.

As an engineer my training has been in logical thought process. My thoughts are that after a time on oral tamoxifen most met cells (if any) would have been starved and that tamoxifen gel would work on the local level to continue tumor reduction and reduce the chance of met cells escaping.

She is not able to travel to a distant cancer center for trials or treatment but her oncologist has clinical trial experience and could cooperate with a trial group if she had the interest. To me it just isn't logical not to be able to try something that can offer some hope for a better quality of life.

I would greatly appreciate it if you could provide any leads that might help us. We are located near Asheville and Hendersonville, NC.

No response yet but did receive an acknowledgement. I read up on plans for clinical trials and they won't help us as they require double blind studies and we just seek life with a bit more quality. If I get a response I hope to open a dialog after all they already know the topical won't kill us so why wouldn't info regarding quality of life improvement be of mutual benefit?

I did receive a response and am wondering how I might proceed since the paperwork requirements might turn off her oncologist. Here's the response (I had to remove links in order to post, regs ...regs ... get in the way of people with a need):

Keepthefaith-

We are approaching the hormonal therapy in the same way. I have also changed my diet (mostly vegetarian, but I do occasionally eat chicken or fish), I am now exercising an hour a day five times a week, and I am taking the baby aspirin. I would use the topical Tamoxifin, but I am unwilling to trade quality of life for a 2.5% benefit. Interestingly, you also have the exact same diagnosis that I have except mine was on the left side.

I just checked around and could not find any reference after 2014. Too bad. It would be even better if there were a Femara Gel.