Malignant Fibrous Histiocytoma (MFH): Cancer Diagnosis and Treatment Issues
MFH Proved to be a Learning Experience
Researching that name after a diagnosis of MFH is as sobering as the initial information provided by the diagnosing physician. The most immediate issue patients, an advocate and/or family members face is what to do with that information.
Before reading of our experience with this disease, take a minute to consider the strides being made toward solving the mysteries of all cancers and successfully treating them. Researchers are rethinking traditional research, prevention, communication, and treatments.
Consider esophageal cancer, for instance, and what studies have shown in recent years. Physicians like D. A. Johnson of Eastern Virginia Medical School in Virginia encourage us to be informed with the latest information on screenings. Links at the end of this hub can help you see more on how cancers are being reassessed, including malignant fibrous histiocytoma.
What is MFH and Why am I Aware of this Rare Disease?
Good MFH explanations are now available online, but to put it in a nutshell, this rare cancer is a sarcoma that can involve soft tissue and bone. It is not well known and those who are familiar with MFH do not have much experience with it, though efforts to collate studies now seem to have come a long way.
The disease may also be called malignant fibrous cytoma or undifferentiated pleomorphic sarcoma and is generally treated like a sarcoma. My father was diagnosed with this cancer at a VA hospital about 4 years ago. That is notable for reasons I will mention below under the heading Why Giving Blood is a Big Issue Related to this MHF Experience.
The VA surgeon expected to remove a tumor in an initial surgery, however, when he reported to us in the waiting room he was surprised by what he had seen. It was not possible to remove the tumor. He did not know what he was dealing with so a biopsy was going to Washington.
By the time we returned for the results the doctor had done his homework on the diagnosis. He said that this particular cancer is only reported about 200 times per year worldwide. He was kind but frank, telling my father that to save his life the arm would need to be amputated.
Adding that if he chose other treatment his life might be extended for a short time, the surgeon explained that it would be understandable if at his age my father chose not to have the arm amputated. That appointment provided important information to consider.
Every patient, doctor, and circumstance is unique. A patient’s general health, age, attitudes, and personality have a good deal to do with how well they respond to any treatment. What kind of support system they have or will accept is also pivotal.
Working with and through emotions along with the facts of the disease and treatment was at times a strain for us, particularly due to being family members. Even as I am finally able to begin writing this the feelings those days created rumble around my memory.
Cathartically sharing all that we were confronted with as the situation developed is not the purpose of this hub, though. The intention is to as objectively as possible share what might be helpful to others from what I experienced and learned in the process.
The Beginning: Diagnosis and Decisions
My father wanted to make the decisions regarding his treatment, meaning his family members had little chance to give input. That he wanted his life preserved yet could not bring himself to decide on amputation was a roadblock in helping him.
We did not challenge him about his decisions because doing so would have prevented our being able to help him at all. Our main roles were to try to help him understand the information given at each appointment in a practical manner and try to provide helpful care.
After deciding to take a chance with less invasive treatment he began a long series of various appointments with an oncology department at his local hospital. He did not go back to the VA surgeon. I doubted whether those were the best choices for the outcome he wanted, but it was what he decided.
The primary oncologist seemed like a very sensible person who was going to do his best. He reviewed the info from the VA and his own tests, then confirmed the diagnosis. Once evaluations were explained, his counsel was good.
Purposefully, yet kindly, he spoke of how no one lives forever and at 85 a person has had a long life. Comments along the lines of, “We’ll work on your treatments Mr. __. Between them, you go home and do what you enjoy with the rest of your life” made some sense. All of this counsel included pats on the shoulder and gentle smiles.
There were several appointments/tests before that moment, and many, many more after it. The sticking point for me came when right after that counsel the doctor sent a sweet physician's assistant in to outline the plan and set up appointments for my father’s treatment choice.
She began by telling us about her mother who had cancer and was successfully treated. That was bad enough, but then she set off all of my alert buttons by pointedly saying, “So, Mr. __, let’s get you started on your treatment and get you cured.”
I immediately felt that we were caught up in a racket, but I could say nothing at the moment because of my father’s emotional condition. I had to quiet myself and get him home before I could freely communicate with the doctor. He, however, had been effectively hooked into the treatment plan.
Treatment of the MFH
After taking him home that day I began trying to reach the doctor by phone. He had said to call if questions came up because they would be there for us, they wanted to help us through the process. I left messages.
Then I decided to just tell the receptionist. She was clearly the buffer so I asked her my question. How dare they tell my father that they were offering him a cure? To do so was cruel and criminal. It was worse than wrong, it was inhuman.
I was outraged, but in the end, I was stuck with the fact that he had latched on to the hope that their treatment plan might really cure him. What did I know compared to all of the professionals?
The scheduled appointments began, but I decided to take my laptop to every one thereafter and type out what was being said to him. He said/she said from memory was not going to carry the day.
Chemotherapy before radiation, then the possibility of surgery to see if the tumor could be removed was the menu. An appointment with a surgeon to review and begin monitoring the case was set up.
We were sent to a chemo department so chemicals could be portioned out. People were introduced, the chemo processes were explained, more papers were signed, and treatment began.
It was a shock to see that part of the approach included setting him up with a port that would allow him to have a portable chemo pack for periods of time. A fanny pack of sorts held a poisonous substance that would create a hazmat experience for everyone involved in a spill.
I was stunned. No one in the chain of events was interested in whether it was a good idea to give this to him, but stating that he should not open up the apparatus or fiddle with the pump/batteries/attachments was like telling a two year old not to touch a decorated cupcake.
Then, telling him that something could go wrong with his fanny pack and if so, he should do such and such was like telling him to open and examine it every few minutes. We did not even get back in the car before he was wanting to open it and I was reminding him not to.
Upon receipt of this device, my father wanted to go see my mother who, quite the opposite of him, wanted to live at a nursing home. Not in my wildest dreams did I expect to go there, have him show her the pack and have her tell him to open it so she could see the chemo.
Not only did she look at it, but she reached in with both hands to grab it. This was curiosity, not dementia, and all I could think is that the doctors in charge of the chemo should ask more questions about the people they send these poison filled devices home with for this, too, seemed criminal. It was a Twilight Zone moment, not a senior moment.
I am still amazed that the I.V. chemo pump pack was intact at the end of that phase of treatment, but a combination of reminding him that the fluid was dangerous, the sturdiness of the pack, and the weakening effects of the doses on him worked together to avert a major disaster.
There were a few appointments for dispensing doses in the chemo center that proved to be interesting. On a personal level, I was surprised at how he reacted to those sessions. Curiously, some people like the community feel of a large group sitting in circles receiving chemo. His calm response to the setting was a mercy.
Nurses managing the doses had a mix of attitudes that gave me pause for thought. Something happening administratively within that unit was whispered here and there, making me a little nervous. What if even one of those people was distracted when preparing and administering the drugs?
Asking questions about treatment was cheerfully encouraged when we were first introduced to each department involved in his treatment, but doing so in the chemo setting initiated irritation--these were busy people!--another reason to keep typing.
I do not mean to leave the impression that all oncology experiences are the same--I actually do not think they can be. It was helpful on several levels that I had begun typing information as it was spoken, but this comes with a warning. None of the professionals liked my decision to do that.
When the courses of chemo were finished and testing told the oncologists where the disease stood, they met with us to reevaluate his condition and say that whether to proceed with treatment was up to my father. They had no recommendations for improving his health.
It’s not what you say but how you say it proved true and my father chose to try the options that were discussed at that time. It would have been more helpful to him for them to be truly upfront about what those options meant. I am left with some conjecture about the tactics used.
Radiation for MFH
The surgeon wanted the tumor size reduced before trying to remove it. He was quite confident that he could take it out if my father would allow him to. What he could not seem to understand was that my father was afraid that if, as he had been previously told, it could not be removed the arm would be amputated while he was anesthetized.
It was the hope of killing the tumor with radiation that caused my father to decide to go ahead with that phase of treatment. I’m not sure the radiation oncologist directing that therapy understood where my father hoped to go from the therapy he provided.
The doctors did not get a grip on what this patient hoped for, leaving me wondering if they were more interested in this curious disease and how it would respond to treatment than in him personally. For all their soothing conversation, there were facts that it would have been fair to discuss more thoroughly.
I encouraged my father to really talk with the newest doctor but he either could not or would not do it. It helped when doctors directed his questions by asking him if he was wondering about specific things, and sometimes I could do that, but not often enough.
For the course of the radiation therapy my father was assigned a radiation therapist who was professional and personable. He was a friend to my father in spite of the difficulties involved, but it came to a point where he had to be very direct.
One day he stopped everything to have a conversation with his patient. He finally told him that he was not the only one who was sick, doing this patient a great deal of good. It caused him to pull himself up short--something we all need to do at times, even when we are sick.
That conversation was crucial to being able to go forward with his chosen treatment, and it did more good than leading him to believe that a cure could be provided. After the last radiation appointment a new evaluation resulted in my father consulting with the surgeon once more.
He again decided against surgery so he was sent back to the primary oncologist for an evaluation. The time, energy, and resources consumed by the office visits, tests, treatments, and hospitalizations that this patient hoped would provide a cure were a waste for him.
All Hospice Companies are not Alike
Weeks led to months of all that went with treatments before my father was told he should get involved with hospice care. It seems that some elderly people embrace this early on because of two primary things professionals communicate to them about it.
There is the aspect of how hospice works to make them comfortable as an illness progresses, but the big news to them is that all of the care and medicine is free. A real discussion about what free means or where it can lead is rare, but that’s for a different hub.
We were immediately connected with a hospice company recommended by the oncologist’s office. The service swooped in and things happened fast. I was not as prepared for it all as I could have been.
The importance of doing some research before agreeing to work with one of these groups can’t be stressed enough. These services are companies that vie with each other for business, but I just did not realize that we were essentially hiring the company.
The initial visit was a long administrative meeting. They took all of his personal information. Basically, a nurse, a social worker, and a chaplain meets with the patient/advocate/other family members/friend, then any other caregivers assigned will have their initial meeting.
The nurse in this instance was excited and aggressive. While a chaplain was speaking with the patient, she created a situation that required I call to cancel the service on the next business day. Good start--the first hospice company was already fired.
Thankfully, my father did not see or hear the problem, but I explained it to the administrator of the company when asked about it. If my father had put it together he would never have allowed another hospice company in the door and I knew enough to know that I was going to need some help with him if we were going to be able to honor his wish to stay out of a nursing home.
It was a relief that he accepted our simple explanation. Research led us to a very fine hospice company. Their doctor, nurses, and personnel were top-notch. They worked to try to help him, they communicated with me, they did what they said they would do, and they were patient, gentle, and compassionate in the process.
One problem I couldn’t foresee but later discovered was that he was taking some medications which he did not disclose to doctors or hospice nurses. As pain medications brought down his inhibitions and he did not go to the VA for the undisclosed medications, dealing with behaviors became more difficult.
After some incidents, the hospice nurse began asking questions related to how violent he might become. I couldn’t know the answers, but I saw the handwriting on the wall and was thankful not to be blindsided when they severed the relationship. I understood--the behaviors had taken a turn for the worse.
Still, he was our father. Family members agreed that we would go the extra mile to try to keep him at home since he feared being put in a nursing home. A third hospice company took the case on even after I was honest with them about how we came to be in the position we were in. They did their best with the complications.
As the disease progressed social workers tried to convince us to place him in a nursing home, but we knew that being put in one would anger and completely stress him. The staff prepared us for his passing to the best of their ability. They stuck with us through thick and thin, and by God’s grace we were able to honor his wishes to stay at home.
Issues related to hospice care that I faced include how the idea of services like Meals on Wheels and other care giving options were at times promoted, not just offered, to the patient. After talking with others who’ve walked elderly relatives through an illness, I know that resources are often wasted when family members are willing to help patients but the patient has bought into the idea of free services.
These free services are satisfying to certain patients in surprising ways. They may get extra attention through them and/or gain the nice feeling that comes with being given a gift--not bad things if they are using the services. They sometimes indulge in a self-reliant attitude toward family members when they are far from self-reliant, and more.
The real problem is that this type of patient will in reality actually refuse to eat “that” food or take the “free” shower an aid offers. They often refuse to do physical therapy after a therapist has gone to the trouble and expense of guiding them through it. Benefiting from the free assistance isn’t on their agenda and they may even trash medications.
A family member might receive the brunt of the frustration from these service providers even though they may have tried to communicate to the person who initially offered the service that it was perhaps not necessary (meals) or would likely be useless since the patient would refuse the actual help (house cleaning) because the family could provide the service.
If a family member who is acting as an advocate and main caregiver is not careful, they will become frustrated with the entire business. They are the only ones who have all the puzzle pieces that truly put the picture together. They see, for instance, that a social worker works from the basis of what they can offer, yet may not necessarily see what is best to offer.
How to keep frustrations to a minimum? At the outset, be sure and do plenty of research and obtain the services of a hospice company that is a good fit for the particular situation. Read up on the available services and get recommendations from other patients and their families.
Don’t be afraid to ask direct questions, take time to consider what you are told, or ask them to come back for a second interview. Most companies will do their best to provide excellent service, but a situation may have special needs and require some extra thought before hiring a hospice company.
MFH, Mayo Clinic
A Malignant Fibrous Histiocytoma Study
When we first heard of MFH there was very little information available on the web, meaning we could not easily learn much apart from what doctors told us. Also, studies are an area that I have only one short experience with, so you might justifiably ask why I would speak to it.
However, that one experience was eyeopening and would have made me laugh if it weren’t so sad. It has given me an entirely new and jaded perspective on cancer research. Still, I do not judge all studies by this experience.
My father agreed to enter a study when doctors asked him to do so. He did not understand that there would be no true benefit for him in it and he was upset when that dawned on him. His last months were spent looking for a cure.
His introduction to the study included information and questions, naturally. Though present, I only observed as my father communicated with the staff that used him in the study. It is impossible to understand why they do not try to double check the information given by patients with family members.
From docs to techs to researchers, they are doing their best, I’m sure, but through our experience I realized that they need to consider that there might be helpful information available to them if they would make a way to talk to family members apart from patients.
The HIPAA privacy laws can get in the way of two-way communication, but when information for research studies could be available from family members a system should be in place for communicating with them since there could be a number of concerns preventing family members from speaking freely in front of a patient.
I could have given them two particular pieces of information that were not mentioned, but I was not free to offer it. Other family members may have offered more that would have been helpful. I also had questions, such as in the next section of this post. Legally, they might not have been able to answer all of my questions, but at least they could listen and learn from them.
Why Giving Blood is a Big Issue Related to this MHF Experience
Though blood donor centers generally deny that there is much risk of cancers being transmitted by a blood bank’s supply, the supplies may be more contaminated than is known or admitted. One question I have is about how well blood banks screen donors.
Ensuring the safety of a blood bank’s supply should indeed be their most important goal, but a little experience makes one wonder if that is so. On asking various nurses about it, the reply is generally something about how a person who gets a blood transfusion is dying so they would probably rather run the risks and have their life preserved at the moment.
Asking a patient suffering from advanced cancer might provide a different answer, though. A friend’s wife had hemophilia. With no cancer history in her family, cancer took her life. All concerned suspect that she contracted it through a needed blood transfusion, but we don’t hear of or initiate enough conversation about this issue.
That wife and mother is not here to ask whether it was worth it. How many others like her are there? What would I do in that case? Many questions complicate such a situation. For most of us, they are not easy ones to answer.
At this point I simply want to highlight the issues that the experience of my father’s MFH and his donor activity delineated. This includes concerns about blood donated by the elderly because more than 60% of cancers in the US are identified in people age 65 and older.
New cases of cancer will likely continue to be reported because of our aging population. The facts cause me to wonder why the elderly are encouraged to encouraged to continue giving blood and/or why there is not a better system of checks and balances in place for ensuring that their blood is healthy.
We all have cancer cells, yet an elderly person could have an undiagnosed cancer and live out the remainder of their life never knowing it. One question boils down to asking at what stage should they be tested for cancers before they continue giving blood.
I ask such questions because my father lived in the Orlando, Florida area and gave blood right up until he moved to the Carolinas about 7 years ago. He began giving blood again after moving and continued until he was diagnosed with cancer. Not one of the professionals ever asked whether he donated blood.
His diagnosis of metastatic osteosarcoma (MFH) came after having a “lump” on his arm for quite some time that began to grow. The first doctors involved should have asked him or us when and where he had given blood, and they should have notified the blood donation centers he went to, but they did not, nor did those who interviewed him for the study.
Will reported cases of MFH rise in Central Florida, Western North Carolina, Upstate South Carolina, North Georgia, or Eastern Tennessee because one person with the disease gave blood throughout the stages of this disease? I don’t know, but it makes sense that we should have a better idea of the possibilities.
He did not know he had it until he was in the end stage, but shouldn’t doctors involved in his life as he aged and in the blood donation process have put a better system for checking his health in place considering what we do know about cancer and the elderly?
Because of our experience, I wonder why approximately 5 years ago the VA doctor explained that only 200 cases of MFH were reported each year in the entire world, yet today we read of increasing numbers of cases in young people. My questions do not have satisfying answers.
We don’t need a federal mandate to oversee the issues, just professionals with common sense responses to them. Perhaps by discussing them and writing about them in posts so more people will think about the concerns and become more informed the issues can be sorted out for everyone.
Were you aware of MFH before reading this hub?
Do You Have Questions or Input on MFH or Related Issues?
I’ve tried not to overly express the griefs and frustrations we were confronted with, partly because God’s grace was truly sufficient for the trials. If you have information that would be helpful please feel free to leave it in the comments section below. We never know who might be helped when we share how situations worked out in our experiences.
Looking at Innovative Cancer Research
• A list of TED talks on reconsidering what we know about cancers.
• Changing the definition of the “C” word.
• General information about MFH.
• Helpful MFH patient information.
• Detailing MFH classifications.
• An opinion on cancer survivors donating blood.
• The basics of blood donation and transfusion safety.
• Elder care attorneys are an important asset for seniors to use.
• Cancer screening for the elderly.