Two Years Out: How's Your Emotional Health

Phyllis Johnson Been Through It Inflammatory Breast Cancer Survivor Phyllis Johnson grew up in Silver Spring, Maryland. Parents of... Send Message Subscribe: Phyllis Johnson

Sunday, November 08, 2009
View All of Phyllis Johnson's Posts

Once upon a time no one studied breast cancer survivors' emotional health. Not enough survived; both doctors and patients assumed survivors should be grateful and move on with their lives. Now that 89% of breast cancer patients live at least five years, researchers a...

Hide Comments | Add comment

Fascinating
Jo-Ann
Wednesday, November 11, 2009 at 09:38 PM

Emotional well being is a rather nebulous thing to assess, and I wonder if the more educated women were perhaps more articulate about their feelings. I would think that the sense of loss of control over their lives would be equally acute for both groups.

I think we need more studies.

Jo-Ann (further comment see: www.ooopsonline.com tomorrow`s post

re: Fascinating
Phyllis Johnson
Thursday, November 12, 2009 at 05:38 AM

Joanne, I wondered the same thing. I tried to find out what method they used to assess "well-being," but couldn't find any additional information. These kinds of psychological studies often use standardized tests of emotional health that have been around awhile. Sometimes researchers will make up their own test if they feel that the standard ones don't measure exactly what they want to investigate. Although they may have also used interviews and open-ended responses that would have allowed the educated women more room to go into detail, they almost certainly used something more "multiple choice" as their starting point. If anyone has been able to find out more about their research methodology, I would be very interested in knowing. I also wanted to find out how many people were in the study, which could also affect the outcome.

re: re: Fascinating
Phyllis Johnson
Thursday, November 12, 2009 at 06:42 PM

I see that I didn't address the part of your comment about educated and non-educated women would both not like loss of control. I've worked with people with a wide variety of educational levels, and I've come to think of education as not so much a matter of diplomas as attitude towards learning. In my definition, my grandmother and my husband's cousin, who both had to drop out before completing elementary school, were educated because they spent their lives reading books and magazines and craving information. Educated people seem to come in two main groups: people whose parents and culture assured them they could be whatever they wanted to be if they worked hard enough, and people who triumphed over a background of ignorance to reach their goals. Thus, educated women tend to believe that their efforts will pay off because that is their life experience. In many cases their educational attainment qualifies them for jobs involving decision-making. Uneducated people may not like their lack of control, but it may be so much a part of their life experience that it's no surprise when breast cancer strikes. I realize there are plenty of people who are exceptions to my broad categories, but these are just observations based on my experience that might explain the study findings.

re: re: Fascinating
Anonymous
Thursday, November 12, 2009 at 10:52 PM

Well ladies I can tell you that the well being and loss of ability to support yourself when all your life you worked and you went to college and paid off those college loans It matters if you have family close, mate, It is harder for someone who has supported them selves all their lifes and then to lose control. Single women alone have it much harder, when you go threw your life savings, live on your credit cards, telling yourself it will be okay then finding out your cancer treatment is lasting a year not three months and you lose your good credit and you find out exactly what welfare is. Here is the saddest part Ca will help you get dx and treatment but not the follow up you need, There are so many costs with treatment unless you have great insurance and lots of money or someone to pick up the bills, it's a bad feeling losing control.

Emotional health after two years
Anonymous
Thursday, November 12, 2009 at 11:38 AM

Let's say I know a women who is in her fifth year survior she has a four year college education, she is single can't work, quality of life poor lymphdema undx for three years now it has caused her pain so her state of mind is not good still on pain meds, antidepressants, antianxiety, sleeping pills infections due to total axilla dissection and radiation. Chemo fog brain lasted three years for her.

re: Emotional health after two years
Phyllis Johnson
Thursday, November 12, 2009 at 06:46 PM

This woman's experience would be a good example of why the researchers urged doctors to provide follow-up emotional support to breast cancer patients. Although it's easier to prevent these kind of problems than fix them, it's not too late for her to get a combination of medication and counseling that could help her improve her quality of life.

re: re: Emotional health after two years
Anonymous
Thursday, November 12, 2009 at 10:40 PM

This women has state insurance like medicaid they do not pay for counseling or emotional help sad but true.

Emotional health
Jan
Thursday, November 12, 2009 at 04:58 PM

As a former patent attorney for a biotech company that conducted many clinical trials, I, too, wonder about the details of this Australian study. I will say I have second-guessed my decision to have a lumpectomy and radiation rather than mastectomy. I would certainly have avoided my recurrence in the same breast if I had chosen the mastectomy. But I don't excessively dwell on this "what-if" mentality. I hope more definitive studies will flush out what the results mean for all of us breast cancer survivors.

Thanks for your post. Jan (www.janhasak.com)

re: Emotional health
Phyllis Johnson
Thursday, November 12, 2009 at 06:48 PM

I'm with you. Researchers are just beginning to understand the complicated relationship between physical illness and emotional well-being, and we need to know much more.

breast cancer research / lymphnode transplant
Cat
Tuesday, November 17, 2009 at 02:24 AM

  
Dear breast and uterine cancer veterans and lymphoedema victims,

let me tell you about my experience with the lymph node transplant.

In 2006 a friend of mine ( a neurologist in Paris) recommended seeing Dr. C. Becker. I had been suffering from great pain in my right arm and my right breast as consequence of a breast cancer operation and post- operation radiation. In fact, I already had had a number of post-operation surgeries, trying to reduce the pain. I was at the point where I simply couldn’t take any more operations. When Dr. Becker told me that I could be helped by a micro-surgery nerves operation and eventually a lymph node transplant, this seemed like the last straw. I decided to go through with it.

Up to this point I hadn’t had any lymphatic problems (I didn’t even know what it was!). Dr. Becker made the surgery and transplanted lymph nodes from my (up to date) healthy left groin to my right armpit. At first, the pain on my right side vanished . I left the hospital one night after the operation!

But then, the place in my groin where the lymph nodes had been taken out started to swell !...an infection!. The wound had to be punctured because fluid was gathering. Then the wound under the right arm started to fill with fluid as well and had to be punctured several times. Then my arm started to swell a little.

In my left groin, where the lymph nodes had been taken out, a painful little lump developed. My right arm kept swelling, getting more and more painful.

The pain from before the operation had returned completely, only now amplified by the pain of my groin and in my right arm. The pain was so bad that sometimes I hardly could stand it. Because I didn’t know what else to do, I went to see Dr. Becker a couple of times .

She punctured the groin gave me injections against the pain, to numb my nerves and prescribed strong medication. None of which helped. The injections, if at all, only worked for a very little time. Dr. Becker convinced me to have one more little surgery, the carpal tunnel cut on my right wrist. It didn’t make any difference in my condition of pain. Finally, the only advice I was left with, was to get a good manual lymphatic drainage regularly. Finding a good therapist for manual lymphatic drainages is not an easy task to accomplish.

Still looking for help and solutions, I came across Dr. Etelka Foeldi,in Germany (Hinterzarten) who runs a clinic especially for people with lymphatic problems. She is an expert in her field, with world-wide recognition, a competent doctor with a sharp and exact diagnosis. She told me that I had developed a lymphoedema in my right arm and a lipoedema in my left leg as a consequence of the lymph node transplant.

Today, I have to see my therapist at least 3 times a week in order to get a lymphatic drainage. When I go on vacation, I have to make sure that there will be a therapist available to give me the lymphatic drainages, sometimes not an easy thing to find, depending on where I go. I have to wear a full arm compression glove every day. If I don’t, the arm just keeps on swelling and swelling, getting more and more painful in the process. Regularly, I need have my whole arm bandaged in order to stop the swelling.

My left leg, absolutely healthy prior to the lymph node transplant, now gives me a lot of pain. It needs lymphdrainages too and compression pants.

The original pain in my breast and right side, reason for the lymph node transplant in the first place, has come back worse than before.

Once every year, I have to go for a 3 to 5 week stay at the Lymphatic Clinic, when the swelling and the pain get too bad.

I would never go through with this kind of surgery again. The success rate of the lymph node transplant (if there is any) is marginal and very relative!.

Lymphdrainages will remain and lymphoedeme unfortunately too!

And look what happens if the operation is not successful! At the Foeldi Clinic, lots of lymph node transplant victims can be found, their disabilities manifold.

If you need more information, please contact me at:

go4smile@googlemail.com

wish you all a lot of luck, courage and optimism and please don’t give up.

Cat

re: breast cancer research / lymphnode transplant
Phyllis Johnson
Tuesday, November 17, 2009 at 07:26 PM

We have had some other people write in about the limitations of lymph node transplantation. I'm sorry it didn't work for you. Your experience is a good reminder to everyone to ask many questions about the risks and benefits of any surgery and to understand what possible complications might occur.