Bald ain’t beautiful

Can freezing the scalp prevent or minimize hair loss associated with chemotherapy? A story in the Minneapolis Star Tribune on Sunday explored the concept of Penguin Cold Caps, which are being tried on an experimental basis. Two Twin Cities women are raising money to make this option more readily available for patients who want it.

Hair loss, or alopecia, has long been known as one of the less desirable side effects of cancer treatment. Most standard chemotherapy drugs work by attacking rapidly dividing cells, but unfortunately they don’t differentiate between cancer cells and normal cells, such as those in hair follicles, fingernails and the lining of the mouth. As a result, the patient’s hair often falls out during treatment. Although it’s almost always temporary and the hair grows back once chemotherapy is completed, this isn’t necessarily much comfort to someone who wants hair now, not six months from now.

The theory behind the Penguin Cold Caps is that by freezing the scalp, the chemotherapy can be prevented from killing cells in the hair follicles and the hair won’t fall out.

Whether this might help large numbers of patients remains to be seen. The article was careful to point out there have been few studies that rigorously examine the benefits:

Doctors aren’t so sure. Hair loss, especially among breast cancer patients, is an extremely painful and emotional issue, they say. They don’t want to give patients false hope for a costly therapy that may or may not work. “It’s difficult, in the sense that there is no good scientific evidence one way or the other,” said Dr. Tom Flynn, an oncologist and president of Minnesota Oncology. “All we can do is advise them on what is known and not known, and they have to make their own choice.”

According to the article, the technique is being used in Europe. A handful of small studies suggests it helps some – but not all – patients.

Scientific evidence aside, it’s intriguing that there’s a formal effort under way to address one of the more difficult aspects of cancer treatment. I’m not sure chemotherapy-induced hair loss has been taken all that seriously by the oncology community. Since it has few, if any, medical implications, it tends to be regarded mostly as a psychosocial/cosmetic issue – hard for many patients to deal with but temporary and reversible. The upshot has been a dearth of good research, not to mention effective strategies, on how to minimize this particular side effect of cancer treatment.

The other thing that caught my attention with this story is that in spite of efforts to reshape the message into Baldness Is Beautiful, hair loss remains extremely distressing for a significant percentage of patients. Although the Strib article put most of its emphasis on women undergoing treatment for breast cancer, I think it’s pretty safe to say chemotherapy-related hair loss is difficult for people regardless of what type of cancer they have. I’m sure it’s very difficult for many men too. On some of the online cancer forums, reflections about hair loss are often very personal and wrenching.

Certainly there are people who decide to flaunt their baldness. “I’m going through cancer hell. Why should I hide it? Let my bald head be a warning to you!” wrote one woman in an online cancer community for young adults. Wrote someone else: “You are fighting for your life – you should be comfortable, not worry about how you look.”

Many people simply don’t feel this way, though. One woman wrote, “Except for my initial diagnosis, I can’t remember ever feeling more hopeless, more trapped, more defeated, than when I started losing my hair.”

Carrie Greene, who was profiled in the Strib story, has already been through chemotherapy once. The second time around, she wanted to try the Penguin Cold Cap because, as she told the Strib, she hated being bald. “I didn’t want to be stared at again,” she said. I suspect there are some people who would rather refuse chemotherapy or seek dubious alternative treatment than experience the wholesale hair loss that so often accompanies chemotherapy.

The bottom line, it seems, is that the emotions surrounding chemotherapy-related hair loss are highly individual. Well-meaning people might say it shouldn’t matter if patients lose their hair during cancer treatment, and indeed as a society we’ve become much more willing to embrace this fact. But if the response to the aptly named Rapunzel Project is any indication, the prospect of hair loss during chemotherapy is still difficult and emotional for many folks. Losing their hair doesn’t make them feel militant or empowered; it’s a blow to their self-image that often makes them feel bereaved and vulnerable.

I’ll give the last word to a coffee-shop manager who spoke up in an online forum about the need to recognize that everyone has a different comfort level with this most personal of issues.

Each person “has to do what’s right for them,” she wrote. “I’ve had many people tell me to go without the wigs (one even going so far as to accuse they are a ‘crutch’ for me… hey, when YOU have been in that position, THEN you can talk to me about it) but I am the one who would be walking around feeling self conscious and ugly… I am the one who would be dealing with it, not them. So most mean well and I appreciate it… but I need to do what I’m comfortable with, what works for me, what gives me some help in dealing with something I’m still devastated by.”

Photo: Wikimedia Commons

The next chapter for Danny Hauser

A Brown County judge has ruled today in the case of Danny Hauser, the 13-year-old from Sleepy Eye who has been refusing treatment for Hodgkins lymphoma on religious grounds.

The decision: Danny will remain in the custody of his parents, but the family has until Tuesday to find an oncologist and obtain medical treatment for him.

The spectacle of a child being forced to undergo unwanted cancer treatment is abhorrent. But for what it’s worth, I think the judge’s decision is the right one. Thirteen is too young for a child to make his own medical decisions, and parents have a legal, moral and ethical duty to be responsible for their children’s well-being. Although no one can ever predict the outcome, Danny’s cancer is highly treatable and this youngster deserves the best chance medicine can give him.

It’s too bad it came down to this. And the whole story begs another question: Could this entire conflict have been avoided in the first place?

More than anything, the Hausers seem frightened, mistrustful and under a great deal of stress. Possibly they didn’t have much trust in the health care system to begin with. Then their son, one of eight children, became seriously ill and in urgent need of chemotherapy. Danny’s mother, Colleen Hauser, testified last week that she felt overwhelmed and intimidated. There was testimony that Colleen Hauser’s sister died of cancer when Danny was 5 and the impact this had on Danny. Danny’s first treatment didn’t go well, making for a rough start to what is surely an ordeal under even the best of circumstances.

Sometimes the medical team can get so caught up in the immediate situation that the patient’s and family’s emotional needs take a back seat. Was anyone making sure the Hausers understood what was happening? Was there adequate communication? Were there opportunities for the family to ask questions and express their concerns? Was anyone aware that Danny has a learning disability and has difficulty reading and may have been less able than other 13-year-olds to truly understand what was happening to him?

I hope someone on the medical team was able to recognize this was a family who perhaps needed more time and attention so they could trust and feel comfortable with the plan for Danny’s treatment.

When Danny didn’t come back for the second round of chemotherapy he was supposed to have in March, did someone follow up? Was there an effort to reach out?

Finally, before this case made it all the way to the courtroom, was there any attempt to talk to the family and try to settle this in a less adversarial way?

I’d like to think all these things happened but I don’t know if they did. I spoke earlier this week with a reporter who has covered this case closely, and he said these questions were not asked during the hearing.

The adults in this case have all been well-intentioned (with the exception of Nemenhah and its shameless exploitation of this crisis in the Hausers’ lives) but there seem to have been some missteps that perhaps left the family feeling pressured, mistrustful and not fully prepared for the reality of his first, difficult chemotherapy treatment. Misunderstandings can build up on both sides. Families can feel disrespected and under attack; the medical team can feel sabotaged and ignored. Although calling in Family Services may ultimately have been the only way to resolve the situation, it could well have been the deal-breaker for the Hausers.

This story has been cast as a struggle over religious belief. It has been cast as being about a child’s right to self-determination and a family’s right to make critical medical decisions on behalf of their child. But I think it’s about more than this. I think at the heart of it, this is a very human story about a family who is scared and overwhelmed and feeling under siege, and who has chosen a questionable, unproven path because, to them, it seems like the only way to keep the threat manageable. Brow-beating them is not going to work; in fact it has clearly been counterproductive. But neither should Danny be left to the mercy of some dubious therapy because of decisions driven by fear and misinformation.

It should not have come to this. But it did. And even though the story will eventually fade from the headlines, Danny and his family still have to live through the next chapter and the one after that and the one after that.

For better or worse, a tremendous amount of damage has been done. Someone will need to talk this youngster down from the ledge he’s on. This family will need a lot of reassurance and a lot of support to repair the bridges that have been burned.

The Hausers also will have to work harder with the medical team. This is a two-way street. They’ll have to find reasons to trust the team and give them the benefit of the doubt.

Right now, in Danny’s mind and in his family’s mind, they might think they can’t do this. They might think this is all too hard and they’ll never be able to get through it. But they’re not the first family who’s ever dealt with cancer and they won’t be the last.

My hope for this 13-year-old and his family is that they can be connected with another family with a child who has had Hodgkins – someone who can be honest with them, share their feelings, help them know what to expect during the months ahead, and give them the kind of support that can only be found from someone who has walked the same path. It’s something that probably should have happened much sooner. A lot of things probably should have happened much sooner. But it isn’t too late, and the Hausers may yet be glad of the court’s decision today.