It is estimated that 182,460 women in the US will be diagnosed with invasive breast cancer in 2008, and that 40,480 will die of the disease (20,080 and 4150, respectively, in California alone). That’s better odds than the rest of the world, where 1.1 million new cases and 420,000 deaths are predicted this year. Chances are that 1 in 8 American women will have the disease during their lifetime. In addition, 62,480 Americans are <a href=”expected to be diagnosed with melanoma in 2008, with 8420 deaths attributed to that disease.
The set of Americans that are diagnosed in 2008 with both breast cancer and melanoma, as two separate primary cancers, is not a null set. It contains at least one person: me.
When you are sitting in the doctor’s office and being told that you have cancer, time really does stop. The remainder of that doctor’s appointment occurred in slow motion, with words being drawn out and motions distorted, as if I were walking through a haunted house display. I instantly turned numb. My doctor explained the pathology from the biopsy and the treatment options. Intelligent questions were out of the question – I had yet to learn the breast cancer dictionary – so all I could muster to ask was whether I was going to lose my hair.
Two months later, after the main surgery, the final pathology revealed that the situation was more serious than previously thought. At that point, I was in a combined state of total, sheer panic and determination to seek the best, aggressive treatment available today.
Three weeks ago, I was diagnosed with the melanoma. By this time, it seemed old hat. I peppered the poor doctor with questions about the pathology and the treatment, and there was a new cancer dictionary to learn. I would much rather have a new primary than a distant recurrence of the breast cancer.
I never asked “why me” as apparently many women do. I’m the fourth woman in my family to have breast cancer, so it’s more of an “oh shit, me too” than a “why me” moment. Out of 4 aunts, Aunt Helen is a 20 year survivor. She has had one instance of a local recurrence that was treated. Out of 9 female first cousins, 3 of us have/had breast cancer. And we are not an old group. Cousin Margie, born six weeks after me, was diagnosed in 2003 and died in 2004. Cousin Carol was diagnosed in 2007. Me in 2008. The rest of the family is now on high alert.
One of the more interesting stories about my cancer, is how it was diagnosed. I’ve been good about getting mammograms on the recommended schedule, particularly after Margie’s death. However, it is often the case that younger pre-menopausal women have dense breast tissue, rendering mammograms less effective. My doctor was concerned for years whether I was being adequately screened. So the last time around, he casually mentioned that perhaps, just maybe, I should have an MRI as well. Just for screening. I wasn’t keen on it – didn’t wanna be locked up in a tube. Doc was leaning 60-40 in favor. I left for a 4 week trip to Europe the next day and didn’t think about it for awhile.
I returned to find that the ever efficient staff in my doctor’s office had moved forward, scheduling a mammogram and sending in an insurance request for the MRI. And that my insurance company, wasting no time, had immediately turned down the request. (I have the most expensive, hot-shot insurance that Stanford offers.) The service denial letter stated
The MRI is an investigative and experimental procedure.
That is a direct quote. My doctor was livid. In the meantime, the mammogram revealed a harmless cyst that we already knew was there and was of no concern. But the insurance company didn’t know that. So my doctor sent in an appeal, using the cyst to demonstrate medical necessity. I left for Europe for a week and thought about this every minute.
Upon my return, the hot-shot insurance folks had decided that medical necessity had been met, afterall, and my MRI was already scheduled by the ever efficient staff. They gave me a pill to make me ditzy and stuffed me into the tube. And here is the result:
On the left, is the mammogram image of my breast. Nothing (except the harmless cyst) shows up. On the right, is the MRI image. Bammo, there it is. Clear as day in the twelve to one o’clock position. You don’t need an advanced degree in radiology to see it. Given the size, it’s been growing for about 4 years. I had it in me when I attended my cousin Margie’s funeral. It never showed up on a mammogram. My doctor’s hunch that I should have an MRI saved my life. Now I have something in common with Christina Applegate (well this, and my comic wit 
).
Turns out that none of the 4 breast cancers in my family were discovered by a mammogram. Aunt Helen felt the lump. Cousin Carol had an MRI (without protest from her insurance). And cousin Margie felt the lump, only 6 months after her last mammogram.
Indirectly, that MRI also led to the early detection of the melanoma. My breast cancer oncologist was diagnosed with a serious melanoma over the summer and at my last appointment, suddenly being very aware of such things, she took my arm and said `you are going to have this looked at’. She didn’t give me a choice and wrote up the paperwork then and there.
The breast cancer consisted of a multi-focal ductal carcinoma in situ, a 1.2 cm invasive ductal carcinoma with moderately aggressive cell structure, and a 1 mm micrometastasis in one out of 12 lymph nodes removed. The official staging is 2a. The prognosis for a micrometastasis is under medical debate – leave it to me to be on the cutting edge of science in everything I do. The melanoma was only 0.3mm deep, Clark’s level II and is stage 1a. This year, I’ve had 3 biopsies, 5 surgeries and counting (at least 2 more to go), 4 months of the most aggressive chemo they do for breast cancer (without a distant metastasis), and I now take endocrine therapy for 5 yrs. I think I had every side effect in the book during the chemo (was even hospitalized for awhile) and I’m amassing enough scars to resemble Frankenstein. And yes, I lost my hair. Throughout, I have been fortunate to receive some of the best medical care in the world.
And, most importantly, I’m alive! I’ve made it through the journey and am on the other side of the ordeal. I am learning to cope with the ever present anxiety of recurrence. I am getting stronger everyday and am starting to live life fully again. I am looking forward to the opportunity of growing old, no longer being frightened as body parts start to display their age. And, most of all, I am thankful for that MRI, because otherwise….
October 17th, 2008 at 10:36 am
Cancer is the worst. Stay strong, JoAnne. We’re looking forward to having you down to visit, and we can celebrate the end of chemo! (And the start of the LHC. Everything good takes time.)
October 17th, 2008 at 10:45 am
I am thoroughly researching bars with a fine port selection for the end of this treatment. I’m thinking of you and will see you soon.
October 17th, 2008 at 11:14 am
Congratulations on your strength and your proactive physician. Good wishes for your future health!!
October 17th, 2008 at 11:20 am
Five surgeries!
A friend of mine is on her second. It really does seem that the diagnoses for this disease is a kind of shot in the dark. In my friends case, the first surgery revealed a much larger problem.
Good luck with surgery, physics and life, JoAnne
October 17th, 2008 at 11:23 am
So, insurance companies now make these important decisions in which they have a commercial conflict of interest???
And all that McCain is worried about is the mere posibility of interference of “government bureaucrats”????
October 17th, 2008 at 11:35 am
Best of luck JoAnne. My father is 13 or 14 years past non-Hodgkin’s lymphoma which was discovered when he was in his early 40s. Like you, he had a bit of luck in discovery of his cancer. He was cut off in traffic and slamming his brakes caused the seatbelt to pull tight across his collar bone. It was sore for several days and so he went to a doc-in-a-box to get an x-ray to see if he’d broken something. He hadn’t, but a few days later the doc called him back saying, “I was looking at your x-ray again and I noticed something funny, so I showed it to a friend of mine…” and the rest, as they say, is history.
I’m glad that you, like my father, had a doctor who went above and beyond their basic duties. Here’s to hoping that we all are so lucky.
October 17th, 2008 at 11:37 am
You don’t know me, but my thoughts are with you anyway.
Thanks for talking about what must be a tough, tough experience.
October 17th, 2008 at 12:12 pm
This looks bad. Sorry to hear it. Keep in mind that for most of us who have thought about things deeply time in a sense does not exist, it is more like an illusion. So ultimately there is nothing to be afraid of.
Lawrence B. Crowell
October 17th, 2008 at 12:29 pm
JoAnne, thanks for posting about your experience. I know none of this is “easy” stuff but I wish you the easiest time possible with any further treatments that are necessary.
This may be something you are considering already, but have you and others in your family been tested for the BRCA mutations (BRCA-1 and BRCA-2)? We had a cluster of young people with breast and ovarian cancers in my family, including one with simultaneous primary breast and ovarian cancers (!), and the BRCA-1 mutation turned out to be responsible. It’s not entirely a case of closing the barn door after the horse is already out in your case, because it gives you warning that you should take more precautions than the usual woman against ovarian cancer. (It varies by the insurance, but my insurance said that if I had the mutation they would pay for more extensive preventative testing that is not normally covered.) And of course, it would be helpful for other young women in your family to know.
October 17th, 2008 at 12:49 pm
I second what Ollie said.
Breast cancer has been very much on mind these days as my aunt was diagnosed with it two weeks ago. Unfortunately, she lives in Cuba (where my family is from; I came to the US as a young child), so I am very concerned about the care that she’ll receive there. Cuba has excellent doctors, but they lack basic medical equipment, drugs, etc. Women over 50 in Cuba do not get yearly mammograms; the country does not have the resources to perform this screening. My aunt felt a lump, and now she is in the hospital awaiting surgery, which will most likely take place on Monday. While in the hospital, she is responsible for providing her own bed sheets along with daily meals, as the hospital is unable to perform these services. This is the reality of a hospital stay in Cuba. And yes, this is the same Cuba whose healthcare system Michael Moore extolled in Sicko! Apparently, he felt the need to lie to the world about the state of healthcare in Cuba in order to make his point about the American healthcare system.
Ironically, my aunt was awaiting a visa to come to the US this month. This would have been her first visit here; I haven’t seen her in 30+ years. Now my mother is trying to get permission to go to Cuba so that she can care for her after her surgery. We don’t know if this will be possible, however, as there is so much red tape involved, primarily on Cuba’s end. I would prefer that my aunt receive treatment here, but financially, that seems impossible. It’s hard for me to accept that she may get substandard care due to money and politics.
Thanks again for sharing your story.
October 17th, 2008 at 1:02 pm
JoAnne – congrats on getting through that. I know there must have been some pretty dark tunnels to go through along the way, especially with the treatment side effects.
But you made it! Yay!!
I hope you wear those battle wounds proudly.
October 17th, 2008 at 1:26 pm
Get well soon, JoAnne!
October 17th, 2008 at 2:07 pm
Thank you for the inspiring story. And on getting through it… mazel tov!
October 17th, 2008 at 2:12 pm
Your courage, wit and objectivity are inspiring! Keep up your wonderful spirits. Rest well, take care and get back to all the fun things that you do.
October 17th, 2008 at 2:22 pm
JoAnne,
I wish you the best. I’m a cancer survivor (4yrs and counting!) and I can relate to the horrors of facing insurance companies and a diagnosis. During that time, I hung onto the notion of “it could always be worse” and that got me through it. (In other words, I’m going to have a really sucky year, but odds are I get to live).
As far as insurance companies go, my physician and all of the references on the subject state that I need annual chest CT’s. My insurance company keeps declining them since I’m “asymptomatic”. It would take a tumor the size of tennis ball for me to become symptomatic. In these scenarios, your state division of Health & Human Services and your local senator are your best friends.
I wish you all the best. I hope the phrases “no significant findings” and “within normal range” become frequent fixtures in your future.
October 17th, 2008 at 2:27 pm
Thank you for sharing, JoAnne, and stay strong. I wish you all the best.
Regarding insurance companies — it just goes to show that government run health services in other countries (like the UK, where I used to live) are not necessarily any more restrictive on what types of therapy, screening, and treatments are available. I’m not saying that it would be any easier to obtain an MRI under similar circumstances, but it certainly isn’t any worse.
But by far the best reason for universal healthcare (in any of the many forms used around the developed world) is peace of mind. Millions of Americans — up to half in recent surveys worry about medical bills. Tens of thousands (at least) go into bankruptcy every year because they are unable to pay those bills, directly affecting the lives of three, four times that number as family members share the burden.
If you get sick in a country like the UK, you can focus all your strength on the battle to overcome the illness or disease without the worry of seeing your life savings being poured down the drain in endless medical bills. Given the strong proven link between stress and ill health, the difference should not be understated.
October 17th, 2008 at 2:38 pm
Rachel: Yes, I tested for the BRCA mutations and am negative. My doctors took great care to explain that current technology only allows for the testing of 5 chromosomes on 2 genes and that more are surely involved. I gave a blood sample as part of a clinical trial in this regard. With the rate of breast cancer in my family, computer models show that we are twice as likely to develop breast cancer than the average population. And so, I have decided to be treated as if I were BRCA positive.
October 17th, 2008 at 2:56 pm
JoAnne, remember not a week goes by without some new medical treatment or discovery being announced. If you’ve had this for four years there seems a good prospect it can be held in check for years more, and thus an equally promising chance a cure or indefinite check on its progression will become available. Also, I’d keep a sharp lookout for any trials and suchlike, on cancer forums for example.
I’m sure none of the above is anything but completely obvious; but all the same I hope it’s some reassurance for you to see it repeated, and I wish you all the best.
October 17th, 2008 at 3:08 pm
JoAnne,
We’re all glad to have you back. Here’s a toast to the end of chemo and you at full strength. I hear they delayed the LHC to give you time
October 17th, 2008 at 4:15 pm
Good luck and get well soon.
October 17th, 2008 at 4:17 pm
You’re incredibly strong.
I’d be happy to have half your wits when it strikes (not gonna bother with “if”s).
October 17th, 2008 at 6:17 pm
Best wishes. I’m sorry you have to go through this.
I’m feeling very lucky that my insurance company didn’t make the least objection to my getting a brain MRI – and this was while I was on graduate student insurance. (Still undiagnosed, but it wasn’t cancer, so I’m not complaining.)
October 17th, 2008 at 10:52 pm
Hi,
I once had a friend who was a horse trainer that suffered through ovarian cancer. She finished her treatments and everything looked great. About a month later, she was diagnosed with leukemia. She had some suspicion that the chemotherapy actually caused the leukemia, but no: they did an analysis of her chromosomes and found that it had been destiny. It was written in her genes that she would get leukemia. The fact she had ovarian cancer had just been a coincidence. She went through the first two leukemia treatments and was getting set for a bone marrow transplant. We visited her often at that time, and I kept noticing that the nurses didn’t quite obey the strict requirements for patients with immunodeficient conditions. We all had masks on, the nurses never did. But last time I checked nurses are equally good at carrying infectious organisms. My friend ended up getting pneumonia that went into her brain and killed her because she had no immune system. Cancer is quite brutal. If you’ve survived two cancers consider yourself very lucky indeed.
David
October 17th, 2008 at 10:53 pm
I only lurk here occasionally, so you don’t know me, but I wish you all the best.
October 18th, 2008 at 5:11 am
Another lurker here. I wish you best too, and congratulate on not being afraid. That is a serious achievement, whatever circumstances.
October 18th, 2008 at 7:52 am
I’m a nurse in an outpatient infusion center. I give people chemo, and I hear stories like yours all the time. Hooray for diligent doctors! Hang in there. That five year mark will pass before you know it.
Love this blog!
October 18th, 2008 at 8:40 am
Thanks for writing this. I admire your courage and spirit. Best wishes for a full recovery.
October 18th, 2008 at 8:47 am
All: Thanks much for your good wishes!
October 18th, 2008 at 9:25 am
Good luck and get well!
October 18th, 2008 at 10:46 am
Get well soon!
October 18th, 2008 at 12:02 pm
JoAnne–
First, wow. Congrats on getting past this initial part and seeing daylight on the other side.
Second, thank you for being vocal. One of cancer’s greatest weapons is stealth. The more people who talk about it, the more who are likely to get themselves checked out. Did you save a life posting this? You may very well might have.
Good on you.
October 18th, 2008 at 7:42 pm
Gosh JoAnne, I am so sorry to hear about your harrowing time. I admire your courage for enduring this ordeal and for sharing it with us. I hope you are feeling stronger and that you will feel truly well very soon. I am sure your hair will grow in again as beautiful as before!
October 18th, 2008 at 11:32 pm
Why doesn’t everyone just get an annual MRI scan? Wouldn’t that make it possible to detect boatloads of cancer early, while it was still easy to treat?
October 19th, 2008 at 5:22 am
Because T1 spin relaxation times for H in the body after exposure to an RF pulse in a 2 Tesla magnetic field are on order of seconds and thus movements during spin relaxation detection and image acquisition produce artifacts, thus high quality 2D image plane acquisition takes some time, thus full 3D reconstruction using image plane summing takes more time, thus highly trained technicians must be paid for their time, thus MRIs are expensive, thus they are used only when cheaper methods not requiring the use of exotic cryogenically bathed superconducting magnets have proven inadequate, thus there is insufficient time and money for everyone to get an MRI every year.
October 19th, 2008 at 9:30 am
Joanne,
After finding your post, I can’t help but reply, despite having very little or nothing new to add. My mother was diagnosed with breast cancer, with a significant number of lymph nodes and other numbers that I did not commit to memory, but seemed ominous then. The most important number now is 20, which is how many years since then she is a survivor.
I remember how hard it was for her going through all the treatments. She never gave up, and faithfully gets screened every since. She never gave up, and has stayed in touch with other survivors, including regular participation in the Relay for Life, in which now she is one of the longest survivors. One visit to that event will convert anyone.
In a family already familiar with this, I’m sure you have many contacts and the best physicians, if you do not or want more, I will put you in touch.
I wish you all the luck, strength, and support I can from across this wi-fi connection.
October 19th, 2008 at 1:06 pm
JoAnne,
thanks for sharing your story. And remember – every day is one step closer to victory.
My mother was diagnosed colorectal cancer about 2 years ago. It was discovered after I, more or less, had to “drag” her to the doctor. She was diagnosed colorectal cancer, classification Dukes C (involvement of lymph nodes).
Now, she has got her hair back and is happy and up and running, 75 years old!
For me who lives in Europe, it’s shocking to hear that the insurance company decides what are the proper methods for finding cancer, and not the doctors!? You all better vote for Obama on November 4…
JoAnne, as a scientist I’m sure you have read everything there is to read. But just in case – you MUST INSIST on getting a very simple blood test for tumor markers as CEA, CA19-9 or CA125 – if you not already have.
If this test is OK there is nothing to worry about. You just have to wait for Sean, Mark and the other guys to throw a BIG party for you!
Good Luck – Stay Strong – I’m sure you gonna make it!
October 19th, 2008 at 3:18 pm
Good luck. Be strong.
A huge hug.
October 19th, 2008 at 4:44 pm
JoAnne, very very helpful post, both emotionally and logistically…for some reason, I like very much what you said towards the end…looking forward to growing old…not being scared as body parts start to show their age…I like this. I really get it too.
I am wondering if this lump was not easy to feel because you knew there was a cyst there already? Or are there some lumps that just fit in with the other breast tissue, so are not easily felt? Or are some lumps actually soft lumps? I do my exams like a clock…but if something had been growing for 5 years I wouldn’t notice it, that is when I began self-exams.
If you will allow me to be superficial for a moment – when I saw the LHC party video you posted, and saw you with the shorty short hair – you do realize that even though it doesn’t matter in the larger scheme of things you are strikingly beautiful with that hairdo?? Your features and the cropped hair go very well together.
Anyway, thanks again for this post…
October 19th, 2008 at 5:00 pm
JoAnne, my mother got breast cancer about 25 years ago (her name is also Joanne). She was operated on and survived thus far. I hope you avoid recurrence. I have seen decent looking studies that say almonds help (not per the specific claims of controversial laetrile, just in general) as well as selenium and garlic. Exercise and good diet in general are of course helpful. Good luck, good health, and cheers to your optimistic and “philosophical” attitude.
October 21st, 2008 at 3:07 pm
Hi JoAnne, thanks for posting this. I admire your courage and resolve! Get well soon — remember, we have to write many more charm physics papers!
October 22nd, 2008 at 2:24 am
JoAnne, I’m a lurker here. I just want to wish you the best of luck for the journey ahead. Both my mother and mother-in-law survived breast cancer (13 and 30+ years respectively) with no longterm effects. My grandmother didn’t, but that was 50+ years ago.
I count as high risk and am being screened regularly, but as you said, X-rays only tell you so much. I hope my doctor will be as good as yours (she claims even small lumps would be easy to feel as my breasts are tiny). A reminder to everybody else out there in a high risk category: smoke = bad. Excess fat = bad (raises post-menopausal estrogen level). Pregnancy and breastfeeding = good.
October 22nd, 2008 at 2:49 am
Estraven: You (and all high risk women) absolutely must be screened with at least an ultra-sound if not an MRI in addition to mammography. Be forceful with your doctor! My cousin Margie had small breasts and by the time she could feel the lump it was too late.
October 24th, 2008 at 5:26 am
I do get mammogram + ultrasound once a year. Nobody ever mentioned MRIs. How would I know if I need one? Any pointers you can share would be helpful.
October 24th, 2008 at 8:40 pm
I discovered this blog some weeks ago when looking for info on the Large Haldon Collider…and discovered something quite different. Most of the physics alludes me, but I read it none the less…and your piece touched me at a place that no sub atomic particle can.
I know it makes no sense and may seem trivial, but one of my beloved cats was just diagnosed with cancer…and as I watch him sitting across the room, under a warm antique panel lamp, I consider how precious life is to all of us.
Ron
October 25th, 2008 at 1:54 am
JoAnne, Glad to hear that you’ve made it through to the other side of your ordeal — and thanks for sharing what you’ve been through and what you’ve learned. (I agree with Sili — it seems like cancer is a “when” and not an “if” proposition for us all these days…)
October 28th, 2008 at 9:10 am
Estraven: Sorry for the delay in reply – I hope you are still checking the comments. Obviously I am not a medical doctor and am no substitute for a long talk with your doctor -which you clearly should have. However, from my vantage point, every pre-menopausal woman with a family history of breast cancer should be getting MRIs for screening. Insurance doesn’t like to pay for it, and it may lead to false positives, but the insurance does bend once family history is mentioned, and false positives are a small price to pay for the real positives.
All: I read an article today which stated that the chemical folks are recently concerned about in plastic bottles is not only carcinogenic, but specifically results in resistance to chemotherapy for breast cancer. Now, the chemo makes you **extremely** thristy, and so I drank cases of bottled water from Costco….I never drink anything from plastic normally, except for this water during the chemo! And now tonight, I’m in tears thinking that I screwed myself and went through the chemo for nothing…..
October 28th, 2008 at 9:58 am
More potentially bad news for JoAnne:
What vitamin C does is protect the cancer cells from the chemotherapy mainly by protecting their mitochondria
October 28th, 2008 at 10:47 pm
Count: My doctors warned me about vitamins, and so I didn’t take any during the chemo. And I certainly didn’t eat enough to worry about getting vitamins from food.
October 29th, 2008 at 9:48 am
I think not being to eat well would be very hard for me if I ever had to undergo chemotherapy
I read here that:
So, perhaps it isn’t a bad idea to eat your favorite junk food during this time
October 29th, 2008 at 9:50 am
Typo, this is the correct link
December 31st, 2008 at 7:27 pm
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January 7th, 2009 at 1:12 pm
I look forward to a day when MRIs (or a similar technology) become cheap and simple enough to be installed in every doctor’s and dentist’s office, like X-Ray machines are today.
August 4th, 2009 at 2:07 pm
[...] have had a number of lively discussions on CV as of late (e.g., here and here) on the state of health care in the United States. Capitol Hill is at present completely [...]