Please Help, Nice Cancer Doc

Yesterday Doctor Claudine Isaacs, who had been recommended far and wide as a great oncologist at Georgetown University Hospital was scheduled to review my case. We had been waiting for what seemed like forever to get this done,

She did not want to speak to the patient nor see the patient. My husband the schedule arranger played phone tag with her assistant, and finally got then to agree to see . . .

. . . my records,

It was like cramming for finals and then being told that you can control noting of how the packet looks.

The random departments from random hospitals and different doctors would just send over what was deemed of interest. My primary care doc wrote up her case noted from the last visit, the one during which I broke down saying that I was unable to function with pain and fatigue.

That, we hoped, could push Doctor Isaacs over the edge if there was a doubt.

Then I sat and waited all day, with my friends praying.

After four I got the bad news, Doctor Isaacs declined to take the case.

Big let down.

So twelve hours later I send a personal email to another doctor at Georgetown, This time I told the story, in brief. I pointed out how serious I think my situation could be. I can only hope I did well because I sent it out an hour ago. I doubt I'll get an opportunity to work on it again for extra credit.

Here's what I said -

Dear Doctor L ,

Your patient (who is identified online as @whymommy) speaks so highly of you that I am hoping you will consider taking my case or speaking with me about it.

I was diagnosed with stage 2 invasive lobular carcinoma on December 6, 2007 and on December 21st had a mastectomy (Dr Flax) with reconstruction (Dr Chang/ GW). The lab work showed the tumor to be positive for estrogen receptors and nearly 5cm in size.

Possible metastasis and either stage 3 or 4 breast cancer was indicated by a bone scan done in February showing uptake of material in thoracic region and lower spine.

My case is complicated by overwhelming exhaustion, whether cancer fatigue or years of cancer symptoms of pain and fatigue misdiagnosed as fibromyalgia who can tell but I am totally out of commission and need help desperately.

The bottom line is that it is getting worse by the day and my primary care doctor, Elizabeth Zapp, feels (as I understand it) that it is not within her area of expertise to treat the exhaustion or the severe back and chest pain that is also increasing. So neither pain nor exhaustion are being adequately addressed.

Nor do we have more information on possible metastasis.

In mid February I had one visit with an oncologist whose first action was to show me a chart  with an analysis showing a 19% chance I'd be dead within 10 years of a cause other than cancer, and if I did survive there was a 50/50 chance of having a cancer recurrence - which my surgeon Dr Flax had told me was more like 5%. 

I was stunned, terrified and felt betrayed by my surgeon.

The following week she sent me to have an MRI while my chest expanders were still in place. The lab obviously sent me home, refusing to perform the test. She did not order anything in place of that and when we spoke by phone would not reveal the result of my bone scan also done that month. Nether did she send this report to my Primary Care doctor. It was obviously a bad fit between patient and doctor.

By then my confidence was shaken to the core and I conveyed to her that I would take some time to regroup and rethink. The exhaustion and pain was overwhelming. Since then my husband who has been doing my scheduling, my Primary Care doctor and I have all been unsuccessful in reaching the right person who could get me seen.

It was only on Friday May 9 that I learned the result of the suspicious bone scan after my primary care, Doctor Zapp called the oncologist and eventually got a report that she shared with me.

Having a possible explanation for this chest and back pain is like a gift and a curse,

I can't keep on without treating at least the pain if not possible spread of disease. And I need your help dealing with what to do next. Doing nothing is not acceptable.

We had been waiting to see if Dr Isaacs would see me, as she was recommended by my Diagnostic Radiologist and Doctor Zapp. On Tuesday May 13 she turned down my case and I started investigating in earnest on my own.

After speaking with (@whymommy) again tonight about her care and your approach, I am asking  Doctor Isaacs to send my file to you with the hope that you will review it and meet with me to suggest a course of action, or in a best case scenario, accept me as a patient.

Thank you as well for taking the time to read this. It was a hard letter to write and to trust my ability to put my situation into words. I'm not sure anyone could do so.

I welcome the opportunity to speak with you at your earliest convenience and would so very much appreciate any time you could give me. My cel phone is xxxxxxxx and I will keep it on and glued to me until I hear from you. And of course you can reach me at this email address.

Again, thank you for your time, and what you've done for (@whymommy).

Sincelely

Susan Reynolds

- and of course if it could possible do any good to be an activist in this situation I thought it was ok to admit it, so I added - - -

Talks about reality in - Boobs on Ice - a blog about breast cancer
Co-founder, Board Member: Frozen Pea Fund, we will not appease cancer

1474 Northpoint Village Ctr #314 Reston Virginia 20194
Writes & Consults about new ways to build commnity and connections
twitter at http://twitter.com/susanreynolds

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Who knows if I should have said any of what I said - for who knows what she's looking for in new patients and whats the best way to get youreslf kicked to the curb. But I'm desparate like I said and so why not just be honest and tell it like it is - like I did.

The next stop is - well I dont even know where but I dont go much further without someone to take charge

Comments

[WhyMommy]

I hope and pray that she says yes or has a concrete suggestion for you. This having cancer without a regular oncologist is FOR THE BIRDS. And just healthy birds, at that!

[Stales]

Please post your progress here. I have done the same thing before when trying to get in to see a doctor - I sent personal letters to 3 doctors and was able to get in see them. Don't give up. It's unfortunate that cancer patients have to deal with this kind of administrative paper chase.

[Otenth]

I am appalled and outraged to find out how the process of finding an oncologist works.

"The next stop is - well I dont even know where but I dont go much further without someone to take charge"

Of course you know that you are the one in charge--you may not feel it, fatigued and in pain and frustrated and confused as you are, but it is obvious to me. What you desperately need, however, is better experts to employ!

[claire]

I am a friend of the "DEB". Stopping by with good
wishes--and my two cents worth. PUSH, AND PUSH.

Never stop pushing the envelope.

[Jonny Goldstein]

Egads, reading this puts the minor frustrations and challenges I face in my day to day life in perspective.

This must be so difficult to manage your case while being the case.

I am wishing you and your family the very best as you keep fighting this.

[Susan Reynolds]

Jonny, thanks for the comment, There's no way any of us would have ever known that this was the way this process works except to get stuck in it!

Susan

PS Next time I see you I'll do a show and tell of my new pre 2nd surgery expansion which is actually laughable. I have essentially a "3 pack" Get ready to avert your eyes if you don't want to know the details :)

[Susan Reynolds]

Claire, You and all of the Deb's friends make great cheerleaders. Knowing her - and you - is a treat!

Otenth, Second Life seems full of drama until I experience THIS life lately. What I may need is a case manager. Oh wait - I think I just need a keeper :)

Seriously I've always managed multiple family illnesses concurrently while twirling flaming batons. In this case I'm totally over my head. You however give me a lot of encouragement - and letting me at least keep up with you in facebook Scrabbulous helps too.