Almost 16 years ago I was diagnosed with breast cancer. That year, 1995, was a very difficult one for our family; my wonderful Mother-in-Law passed away in January, and my diagnosis came on St. Patrick’s Day the same year. She was my “rock”; always positive; always praying for our family; I wished that SHE had been my mother rather than my mother-in-law. And I wished she was there to pray for me.
My bout with breast cancer was, to say the least, very unnerving.
I was working for San Diego Job Corps at the time, and my health insurance coverage was with Mercy HMO. I learned about my diagnosis from a letter my PCP sent to me that stated that “there is an abnormality on your mammogram and we think it may be cancerous. Please make an appointment to see me as your earliest convenience.” At my earliest convenience? How about today? Now? And why did I have to hear about this in a letter? Why couldn’t the doctor call me and tell me that there might be a problem? Or how about having his nurse call and ask me to make an appointment to see him?
While meeting with him, a week after receiving the letter, he made sounds that I could not interpret. It ended up with him telling me that he couldn’t feel anything – yeah, isn’t that the truth – and I needed to see a surgeon that he recommended from the same “Medical Group.”
Since the female surgeon he recommended graduated from Pt. Loma High School the same year as my daughter, I felt akin to her and made my appointment. (How stupid was that?) She confirmed what the mammogram had shown – she must have had a better “feel” that the PCP – and said I needed a biopsy.
So I had the biopsy only to find out that the surgeon did not get all of the margins and that more surgery was in the offing. In talking to her she told me that I should have a double mastectomy because “ . . . although there was no sign of cancer in the second breast, there was a 50% (!) chance that I would get it later down the road.” (I have since found out that her percentage was way off.)
I called my insurance company – Health Net – and asked for a second opinion. They told me that I could go anywhere in the Mercy system for a second opinion. I told them I didn’t want to go to the Mercy people because I did not think that I could get an honest opinion from a colleague of the surgeon. They in fact said, “tough shit.”
My husband called different places to see where I could go for that 2nd opinion and he landed at the “Sloan Kettering Foundation” in New York. They told him that the cancer foundation at UCLA was the best on the west coast and suggested I go there.
I called back Health Net for permission to go there and they turned me down. I decided to go anyway because I had trouble believing the Mercy physician and I wanted an outside second opinion. I paid for the opinion out of my own pocket.
After bringing all my information to UCLA, they said that, at best, I should have a lumpectomy on the cancerous breast and forget any treatment on the other breast. They said I did not need a mastectomy at all.
I went back to Health Net, armed with this new information and said that I wanted a third opinion. Again they refused. So…pen in hand I wrote to the Insurance Commissioner for the State of California, and, lo and behold, permission was given by Health Net to obtain a third opinion, which, by the way, they paid for.
I chose Scripps for that third opinion, and the doctors there agreed with the UCLA diagnosis. Back to Health Net where they told me that Mercy could do what UCLA and Scripps suggested. I again threatened with the Insurance Commissioner and I was granted permission to have the surgery at Scripps with Health Net paying the bill.
So….15 years ago I learned that one has to advocate for one self because the “system” does not have rules that are easily broken. Fifteen years ago I found that medicine is still just “practice” and what one physician believes is not necessarily the belief of others physicians in the same kind of practice.
Why this article now? Because three weeks ago Buddy, my Golden Retriever and I were sleeping in the same room and he woke up with one side of his face completely swollen. He could barely open his eye. I woke up with severe itching at the incision site of the lumpectomy. Were we bitten by something? A spider? A hungry mosquito?
I immediately took Buddy to the vet, who after performing $1000 worth of tests on him, was not sure if the swelling was caused by an insect or if he had an abscessed tooth. This appointment took place the same day that I noticed the swelling. Buddy was given dental x-rays and placed on antibiotics immediately.
I called my own PCP and although she sent in a request for a mammogram that same day, I had to wait 2 weeks before I could get in to have it done. Anyone that has had breast cancer surgery knows that any little twinge allows the mind to recreate that cancer. Even if there is an explanation for the twinge, we are sure that the cancer is back.
In the meantime, Buddy’s swelling went down, only to return after he had finished the course of antibiotics. When I took him back to the vet the same day the swelling restarted, the decision was made that it probably was an infected tooth and should be removed as soon as possible. Even though the cost would be another $400, Buddy is my “baby” and it had to be done. (It was, and it WAS an abscess.) Meanwhile, I was still waiting for my mammogram. Yes, the itching has stopped, but what caused it in the first place?
Finally, the Wednesday before Thanksgiving, I had my appointment. The tech took 4 pictures – as is the protocol – and then said she wanted to compare it to the last time I had a mammogram in 2009. Then she returned and said that she wanted to take one more. Why? “Well”, she said, “it looks like they took 5 last time so I better take an extra one too.” Any amount of questioning I did always came up with the same answer: “I am only the tech; the doctor will have to read the mammogram”. She told me that I would receive a letter from the department telling me the results within 10 days. Another “freaking” letter!
So here I sit; worried to death that the itch was cancer-caused; worried to death that after all these years the cancer may have returned. I’m considerably older now; a widow; maybe my life expectancy is 10-15 years more without cancer. The mind is such a creative being. The scenario’s that I have come up with are living nightmares. To have surgery; not to have surgery, etc. Let’s see – Wednesday was the mammogram; Thursday was Thanksgiving; Friday the office is closed because of the Thursday holiday; Saturday and Sunday are non-working days; Monday would be the first possible day that the radiologist could look at the results. Maybe Tuesday. Then he has to write up the results; Hmmm. It might be close to the middle of December before I receive my letter.
Patience has never been my long suit. Creative thinking has been a force for years. I think in my next life I want come back as a dog living in a house just like mine. I wonder – do Vet’s do mammograms?
Editor: We just received this from Judi:
The letter’s here,
It’s on the table
I’ll get to open it
When I’m able.
The message in it
Could be bad,
The message in it
Could be sad.
The message in it
Could be fine,
The message in it
Could give me time.
I guess I’ll open it
It’s almost nine
Man, I hope it is
Kind.
I unsealed the flap
Am ready to read
I’m so scared
I nearly peed.
You won’t believe
What it had to say,
Hip, Hip, Hooray,
I am OK!
{ 22 comments… read them below or add one }
First, I must say you are always in our prayers and there is NOTHING there. Your results are going to be normal. Second, I’m happy that Buddy is doing great. Third, I myself have learned if you DO NOT advocate for yourself you are at their mercy! After complaining about back pain for over 12 yrs, nothing was done. Last year when I notice I’ve been placed out of work too often for the same issue I demanded further evaluations. They did an x-ray and said they did not see anything. I went to a chiropractor who did an x-ray and immediately told me I have bone rubbing against bone, bone spurs and compressed nerves. I told my PCP who then sent a referral to their spine clinic (which I didn’t know Kaiser had). By the time they started pain management I was not responding to their treatment so I was told surgery was the option. The surgeon who saw me a total of 5 times including pre and post-surgery just sent a report to disability stating that I can return to work in Dec. My PCP who has been treating me since 2001 sent her report along with the neurologist report and they think my condition is “poor” nothing else can be done because I’ve had this problem for too long without any treatment. LOL
I’m now considered a high risk case by all and I have a pre-existing disease. I teach my children (grown adults now) every chance I get about advocating for themselves. Thanks for sharing and I can’t imagine how difficult it is for you at this moment. But remember you are always in our prayers.
Praying that God spare you in good health for many years to come… God Bless you and your family. You will be better than ever in his name.
Thanks for sharing your stories, sisters.
Like you, Marcia, I am covered under Kaiser and I’ve learned they are loathe to take aggressive action. There is a complaint form on the kp.org site and I have taken advantage of it twice now. It isn’t much different with other providers who pass one up higher and higher on the ladder to the doctor who can ease your pain.
Some day I will tell you about my sister who was one of the best known herbalists in the South. She suffered two years before she learned she had pancreatic cancer.
Hi Marilyn, Marcia and Irma,
I wish that I could get more women to advocate for themselves. Yesterday I received an email from one lovely lady that lost her daughter several years ago. She is in one of my support groups. She has Kaiser as her HMO and went in for a mammogram last Monday; had a biopsy that showed she had breast cancer. Without a second opinion she signed up for a mastectomy TODAY, and not only had the surgery – I think because that was the plan – it was done as an OUTPATIENT! I am absolutely horrified. I had a lumpectomy and was in the hospital for 2 days; this is so much more and they send her home. You know that if there was a “testiculargram” for men to check and see if they had testicular cancer and it was like our mammogram, there would be whole lot more concern for the male than for the female. I appreciate your comments – and my prayers are with all of you.
Judi my friend. What a sucker punch for both you and Buddy to awake one day to something terribly wrong. I have had so many friends and family members diagnosed with breast cancer. It is as if a plague has been released upon women. Estrogen simulators? I don’t understand what the hell is going on. Our food? Our cleaning products? The chlorinated water coming out of our shower? All I know is that my women friends turn to me and quietly say “I have breast cancer” or that “I have had a recurrence of breast cancer.” I have a hard time equating pink ribbons to those quiet admissions.
We are an odd community Judi. I think we understand what it means to spend $1,400 to keep a beloved pet alive . For those of us who have lost what we love deeply, we turn that love to what yet abides- often our beloved dog or cat.
Please give us an update. You are not alone. Con cariño, Annagrace
You are such an understand person, Annagrace. Thank you for your kind words. I, too, wonder what causes so many of us to have this diagnosis. True, men get breast cancer also, and the cause there is quite a puzzle also. Today, one of the women from my support group had a mastectomy as an OUTPATIENT at Kaiser. I am horrified about this. It is the true “drive through” mentality . A friend of mine that holds a high position at Kaiser said that it is probably done that way because it is “safer to send her home than to expose her everything that is in the hospital.” This patient did not have a second opinion; her PCP had her on hormone replacement therapy after a hysterectomy 20 years ago. So what is causing so many women to become a statistic? How about all the experimentation that the Military is doing – not just here, but all over. Remember Agent Orange?
Thank you for your comforting words. Tomorrow may bring a letter from Radiology. Or then again…it might not. And by the way – Buddy is doing well without the tooth in his mouth. Today his arthritis is acting up, but so is mine. After all – he is almost as old as I am, at least in doggie years!
My sister theorizes a cause might be the chemicals in modern deodorants.
I think your sister is right. I have been using a mineral salt for years now, everything else just seems to upset my pits!
Hi, Judi. Stop worrying. The older we get the tumors grow more slowly, if they are tumors at all. Last time I was “diagnosed” with breast cancer, there were three completely different opinions from two hospital chains; the biopsy took tissue from the wrong site; the radiologist and the pcp did not agree; a “major” cancer palace got it wrong too. So, my point is that this has, like many other areas of “medicine” has become an industry and certainly is not very scientific. That was in 2008. Had a second lumpectory in 2009. No chemo; no radiation; went macrobiotic and I feel fine today. The percentages they spout are meaningless, in my opinion, just like the ubiquitous ‘clinical trials’ that produce conflicting results almost daily. In 1997, my then surgeon told me I had only a 33% chance of living 5 years if I refused the slash and burn course of treatment (radiation and chemo). Obviously, he got it wrong too. Contact me off line if you like. I will pray for you, too.
The OB Rag has a new update to Judi’s post. It has been added to the end. You gotta see it.
Yay!
Frank,
have some news for you in ob about the taxpayers dollars being spent for the wealthy. a guy on santa cruz who just built apts has the city there
right now digging holes for him to plant trees. it’s unbelievable. i took pictures of the whole block. one of the guys walked up to me and said you;re not the news so who are you taking pictures. i then asked him who he represented and took his picture for which he thanked me. got good pictures of the owner and his dog too. it’s looks like they are pretending to dig holes for plastic pipes (water) but they are planting trees in the city property. they have also dug up the entire street and blocked off the whole street to do this wonderful job for this person. he also saw me taking pictures and walked off with his dog. i would certainly be interested to know why the city has taken such an interest in this particular property since it has just been built and is now for sale? can we find out exactly what they are doing there?
sorry for sending it on this page it was the only page i could bring up.
Judi- I just read your postscript. I am now raising a glass to you, your boobs and Buddy!
And…Annagrace, I think I will join you. Thanks for all your positive thoughts. Buddy thanks you too!
CONGRATS!!
Always glad to hear good news, Judi. Both medicine and education are treated as businesses in this country. What’s wrong with our leadership that they can’t understand that certain social services, namely medicine and education, are humanitarian in nature and a government “for the people” shouldn’t be looking at the accounting books when handling matters in these areas.
For chrissakes, to be a healthy nation we must provide the means to the ends. Good for you for having the wits and the gumption to challenge the system, the rules of which have nothing to do with serving the consumer, and getting the care that’s too often deprived of the common citizen. Medicine and education are what those leaders need most!
Hi Zach, Your sister’s theory has been around for many years. The medical field says that there is no problem with modern day deodorants and continues to allow them to be sold. (The controversy lies with the aluminum as part of the ingredients.) Unfortunately, there will be many a breast removed before we find out what is really causing breast cancer.
As far as the leadership and understanding about how to make the nation healthy, just look at what the legislature is doing about the Obama Health Care bill. They want to cancel it yet in a poll of the people they want it to stay. I suggest that we toss out everyone that makes over $100,000 a year as total income and only elect those that are in the trenches – making less that $100,000 a year. Maybe some sense might come out Congress.
I could be wrong, but my great-grandmother might have opted to remove her breasts had that operation been available in 1908. Instead, she died of breast cancer, aged 60 something.
Hi Marilyn, I’m surprised that they even diagnosed her as having breast cancer. So many things that now have names were always referred to as “old age.” Look at Alzheimer’s – all similar illnesses were called “dementia” ; how many lives could have been saved with proper diagnosis and/or research.
Gobnait – just received your comment. How right you are – wrong breast; wrong stats; wrong “cure”, etc. We have to advocate for ourselves and do it in a smart way. Obviously your prayers – and prayers from others – worked, because the mammogram was negative. Thanks for your offer to contact you off-line. Judi
I am so glad that you are okay! Wonderfully written article. I felt the anguish of the wait.
Thanks, Sandi. Coming from you – another author, I appreciate your comments. Am now waiting to see a surgeon about removing the one remaining parathyroid that the other doctor told me he removed back in 1977. Apparently he didn’t and the endrocrynologist says it should be removed. Hell—getting old sucks!