Jyber

Thanks, Ann, your comments are very helpful. Sending a strong letter is what I am considering doing. I wanted other reactions/feedback before doing so. This study is through the University of Pennsylvania.

I need to vent.

 I am over a year past treatment (mastectomy and chemo) and now just on femara for four more years. I am feeling very grateful and ready to take on my "second gift of life" full force.

One remaining issue that I have struggled with for a long time is weight. I heard on NPR about a clinical study being done by a major research university in my region. They were soliciting volunteer subjects for this study, which would compare two diets. You needed to be overweight and diagnosed with Type 2 diabetes. (Hey, I met the criteria!)

I contacted the coordinator by e-mail, provided my height and weight, and mentioned that I had been successfully treated for breast cancer in 2007, and had had chemo treatments. She wrote back that I seemed to fit the criteria for the study, explained more about it and asked me to call her if I were interested.

I made the call, and again mentioned that I had been treated for breast cancer and did NOT want to waste any time if that would be an issue. She said she would double-check with the nurse practitioner, who needed to review my medications, but it should not be an issue. I asked her to let me know immediately if she got a "NO" from the nurse practitioner -- that I would not want to waste time pursing this if I would not be in the study, Again, this coordinator told me she saw no problem and to assume I would be in the study.

She sent me paperwork for my primary doc to complete. Because she wanted it returned promptly, I ran it over to my doc's office with a cover letter and request that she turn it around quickly. I also offered to pay any fee in connection with the paperwork, as it was many pages of responses from my doc. I picked up the paperwork a few days later and paid a $25 paperwork fee (fine by me, as I appreciate that doctors do need to be compensated for things like this). Primary doc completed all the papers and said "no contraindications to participating in the study."

Meanwhile, I got myself very pscyhed about being in this study, which would combine behavior management sessions with one of two diets being tested. The study would run for two years (one with lots of sessions and the second year mainly a follow-up). I knew it would be a major commitment but felt that I would take the commitment to the trial seriously and thus be highly likely to stick with the program/study, as opposed to doing it on my own or with Weight Watchers.

I also had mounds of paperwork to complete myself -- data on weight of family members, detailed medical and lifetime weght data, an essay on my motivation, LOTS of personal info, a depression questionnaire, MANY detailed questions on lifestyle, eating and exercise habits, psychological questions, etc. This took me many hours to complete.

I was asked to come to the medical center (in a city in my region) for a 1 1/2 hour initial appointment which also involved a 45-minute drive one-way) and search for and cost of parking. The study does not reimburse for expenses. I set aside a day for doing this.

With all my and my doctor's sompleted paperwork, I met with the study coordinator who took my papers to review and left me to read the official authorization paperwork. She first weighed and measured me.

Within a minute or two she returned and told me that while she knew I had told her I had had breast cancer, she had just learned from the nurse practitioner that that disqualified me from the study. I broke into tears of frustration. I had raised this issue several times during the initial screening purely to avoid it coming to this point!

The coordinator told me that the nurse practitioner had been on vacation when we had first spoken and written weeks ago, and only now had this been discussed.

IMO this should have been discussed well before I took this trip into the city. If the NP was on vacation when I asked the question, the coordinator either should have gone higher up to the study managers/directors to get a response, OR should have run this past the NP once she was back from vacation -- not waited until I was sitting in the office with all paperwork done and paid for and my car in a paid spot with gas used for the trip. NOT to mention my time on a beautiful day, and my psychological investment and consequent letdown - the biggest issue for me.

The coordinator made a point of telling me that she took "full responsibility" for the mistake, (reminds me of John Edwards LOL) and also that this was "not a case of cancer discrimination."

I am frustrated and disappointed at how this was handled.

Reactions??

Suggestions??

THANKS!

I very much hope I did not scare you with my mention of heart damage. I just believe in full disclosure, but meant to stress that my case is unusual and far from par for the course. My point was that we HER-2 + ladies are so fortunate to have herceptin available. But I feel dishonest saying that without disclosing that I could not get the full treatment.

I am still well within normal ranges for heart function, and am in the VERY small percent of those who had heart damage. Plus, heart disease runs in my family (dad died at 63 of a heart attack).

So PLEASE do not stress out. My bet is that you will do fine.

I am now as happy as I have ever been in my life (in part because I truly know how fortunate I am) and wish the same for you.

You will get through this and do lots more great trips. Why not plan one now to celebrate the end of your treatment?

Jyber/Joan

Thanks for your response, BMac.

Boy, do I understand where you are coming from re feeling "lucky." When I was first diagnosed I was told my tumor was big and aggressive and that my prognosis was uncertain. I also felt guilty as I had neglected my mammos for years. Now I feel like I have been given a second chance at life and am deeply grateful every day.

Again, best wishes,

Joan 

Snowyday, if I were you I would go in assuming I would NOT be in the small percentage of those treated with herceptin who develop heart issues.

Even I, who did have to stop herceptin because of heart damage, am still with an ejection fraction within the normal range (55%).

I actually begged my oncologist to continue with the herceptin, because as I told her, "I am more worried about breast cancer than heart disease." I figured let's use all weapons on the BC; I can deal with other issues later.

Now I do appreciate how she handled it. Still, I would assume, unless you get other evidence, that herceptin will not be a problem for you. It is not for the vast majority of patients, who benefit greatly from its power over HER-2 + breast cancer.

Best wishes to you.

ARRRGGHH!

I am so sorry to read this - you have both psychological (frustration over the PET scan delay) and physical pain.

Please allow everyone with you on this trip to cater to you. It can be their gift to you -- as well as your gift to them.

I hope you are feeling better in both areas before too long.

 Jyber/Joan

Janis,

 What a bummer -- but what a trooper you are!

Hoping you can sock it to those bad guys, knock them out and resume eating those sandwiches for a REALLY long time.

Thanks for keeping us posted.

Joan

I had a single mastectomy and use a prosthesis that is inserted into a pocket of a mastectomy bra. I have had no trouble with it at all. Nobody who did not know I had a mastectomy would guess.

I am curious about the "push" by surgeons for reconstruction. I told my breast surgeon that I knew I did not want reconstruction. He wanted me to meet with a plastic surgeon anyway. I simply never made the appointment. Before the surgery, I told him again I was confident I would never want reconstruction and if anything I might later want a preventive mastectomy on the other side. He told me he was doing a skin-sparing mastectomy anyway in case I changed my mind.

All I cared about was being cured. Plus, I spoke with someone who did have reconstruction and years later it needed redoing when her other breast aged and changed. So she needed more surgery so they could match again. Getting a new prosthesis is much easier in my opinion! I am all for keeping things simple.

But in any event, different strokes for different folks!

I had a single and have never been tempted to have reconstruction. I prefer keeping things simple. I am one year out.

I use a prosthesis when I go out but am often lopsided at home.

My only issue is that my prosthesis is somewhat heavier than I expected. It is fine once on. It goes in a pocket in the mastectomy bra.  No problem with slippage.