Treatment Considerations for Acromegaly

Dr. Ally Prebtani, Endocrinologist

You have several options when it comes to deciding on the course of treatment for acromegaly. As such, it is important for you to understand what these options are and their specific benefits and risks. In the following editorial, we’ll discuss how to prepare to talk about your options with your healthcare team, specific factors to consider in your decision process, and how to get the most out of your treatment.

Preparing to talk about your treatment options

Receiving a diagnosis of acromegaly can be an overwhelming experience and gathering as much information as possible about this condition can be a good way to cope with the news. Getting informed about acromegaly is also a very important step in preparing for a conversation about treatment options with your endocrinologist. It’s highly recommended to talk to other patients who have acromegaly as they can provide you with their personal experience with treatment. If you find it difficult to reach out to other patients, the internet can also be a good source of information on acromegaly, when using credible websites, but don’t read too much into what you find as acromegaly affects each individual differently. Once you have gathered information, come prepared to your clinic appointment with questions and take notes during your appointment so you can review them later at home.

Once diagnosed with acromegaly, starting treatment early can potentially improve your health outcomes. Early treatment may help reverse or prevent progression of complications such as sleep apnea, cardiovascular problems, arthritis, diabetes and fatigue. Waiting too long to start treatment could potentially cause some of these complications to become irreversible.

It’s normal to feel hesitant about starting treatment for acromegaly. You may not feel an immediate onset of symptoms related to acromegaly, as they appear gradually over time and are often similar to the symptoms related to the aging process. As such, it’s common to simply ignore these symptoms. Other factors that may cause you to be reluctant to begin treatment include cost issues, the fear of surgery, and the fear of needles for medical therapy injections. If you have doubts about treatment, talk to your healthcare team. Your healthcare team will address your concerns and provide you with access to resources that can help with treatment management such as financial assistance, support groups, and directing you to other patients who you can talk to. Together, you and your healthcare team can determine whether the benefits of starting treatment are greater than the risks.

Goals of treatment

The overall goals of treatment for acromegaly are to reduce the size of the tumour, or remove it all together, to reduce or eliminate symptoms, and normalize your IGF-1 level. Depending on the treatment received, treating the tumour will help normalize growth hormone (GH) and/or insulin-like growth factor-1 (IGF-1) levels. By normalizing your GH and IGF-1 levels, complications such as heart disease, heart failure, high blood pressure, diabetes, sleep apnea, and colon polyps can be reduced or even prevented. If the tumour is not treated and continues to grow, it could also potentially lead to a decrease in other pituitary gland hormones, called hypopituitarism. Reducing symptoms and tumour size as much as possible are the general treatment goals for most patients with acromegaly; however, since all patients are different, you may also have your own specific treatment goals.

Making the decision about treatment

You and your healthcare team will work together to decide which treatment options are best for you. Your healthcare team takes into account several key factors when discussing the best treatment approach with you. These factors include: your biological age, which is the age most healthy people would be when they have a body and mind similar to yours (this differs from chronological age, which is the number of years you have been alive), fertility considerations for women, severity of symptoms, the size and location of the tumour, GH and IGF-1 levels, cost considerations, insurance coverage available to you, and other conditions you may have that require medical therapy. For instance, if you also have hypopituitarism, you may require additional medication to treat this deficiency. In addition, when it comes to surgery, a surgeon’s experience performing a tumour removal is an important factor. After a thorough discussion of these factors, you and your healthcare team can make an informed decision on your best treatment options.

Treatment options

There are three main options for treating acromegaly:

  1. Surgical therapy
    Surgical therapy involves removing all or part of the tumour. It is considered the main treatment option.

  2. Medical therapy
    Medical therapy involves taking medication to reduce GH and/or IGF-1 levels. It is generally a second option but can also be the main treatment option in some cases (e.g., a patient has a tumour that cannot be operated on because of its location or size, or surgery is too risky due to other medical problems).

  3. Radiation therapy
    Radiation therapy is considered the third option, and this involves reducing the size of the tumour and lowering the amount of GH it releases, or secretes.

You may receive a combination of these treatments. For instance, you may start with medical therapy and eventually become a candidate for surgical therapy later on. Then following surgery, you may still require medication to keep your symptoms under control. Ultimately, it comes down to your individual needs when deciding which course of treatment is right for you.

Risks associated with treatment

As with most treatment options for chronic conditions, there are some risks associated with receiving treatment for acromegaly. When having surgery, the most common risks include: bleeding, damage to the pituitary gland causing hypopituitarism, infection, visual damage, and an adverse reaction to anesthesia. Depending on the type of medical therapy received, you could experience side effects such as gallstones, high or low blood sugar if diabetes is present, diarrhea, abdominal pain, nausea, fatigue, and/or pain at the injection site. When looking at radiation therapy, risks include permanent loss of pituitary gland function, vision issues, and changes in memory and cognition. Be sure to talk to your doctor for complete information about the risks associated with treatment for acromegaly.

Types of medical therapy

There are three types of medical therapy for the treatment of acromegaly. Each type of medication works differently to control tumour size, symptoms, and GH/IGF-1 levels, has different side effect profiles, and is taken differently:

  1. Somatostatin analogues
    Somatostatin analogues are often the medical therapy prescribed first. They are taken by injection.

  2. GH receptor antagonists
    GH receptor antagonists are usually prescribed if somatostatin analogues are not working or cause unmanageable side effects. Like somatostatin analogues, they are also taken by injection like insulin.

  3. Dopamine agonists
    This type of therapy is usually prescribed if the IGF-1 levels are mildly elevated or the somatostatin analogues cause unmanageable side effects. Unlike the other two therapies, dopamine agonists are taken orally.

You may wonder why some acromegaly medications are injected whereas others can be taken orally. The composition of somatostain analogues and GH receptor antagonists prevents them from being taken orally as they would be destroyed by stomach acid and then become ineffective in treating acromegaly. Refer to the treatment section of true-2-me for further information on medical treatments.

Living with treatment

Once you start medical therapy, you will likely want to know how long you will have to continue with treatment. The answer to this question is highly dependent on each individual patient and will vary from case to case. Generally, if you are responding well to therapy, you will likely have to continue with treatment indefinitely. Living with treatment for such an extended period of time can often come with its share of obstacles.

If you find yourself facing obstacles in taking your medical therapy, the company that supplies your therapy might have a patient support program that can assist you. For instance, you might be on an injectable medical therapy and sometimes find it inconvenient to go to the clinic to receive your injections or are unable to rely on a carepartner to assist you. The patient support program for your therapy can provide field nurses who can assist you with your injections at home. Perhaps you do not want to rely on others for your injections. The patient support program may also provide at-home or in-clinic training for self-injections, depending on the specific type of medical therapy you are using. These programs are offered to help you optimally manage your therapy by way of providing counselling, education, and additional support that complements the care provided by your healthcare team.

In addition to receiving counselling to help overcome injection issues, the devices used to inject the medication are also constantly improving to help make treatment delivery manageable. Technology has helped improve injection delivery through offering smaller needles and easier to use devices that minimize pain and discomfort.

Acromegaly and pregnancy

A common question women with acromegaly ask is whether or not it is safe to become pregnant while on medical therapy. If you are a woman with acromegaly who is looking to start a family, your endocrinologist will likely have you stop taking medical therapy for acromegaly during your pregnancy. Some of these therapies have clinical studies that show no negative effect on the baby and mother if taken while pregnant, and that a patient can continue taking the medication if it is absolutely necessary and the benefits far outweigh the risks. Women with acromegaly who have been on medical therapy for awhile and have had good results will generally be okay if they stopped treatment during a pregnancy. To learn more, read the true-2-me guest editorial on acromegaly and pregnancy and talk to your healthcare team.

Questions to ask your healthcare team

When it comes to deciding on a course of treatment for acromegaly, it is important to be proactive and educate yourself on all available options before coming to a decision with your healthcare team—be aware of all the benefits and the obstacles that can affect the course of treatment. Consider the following questions:

  • How will the treatment control my acromegaly symptoms?

  • Will the treatment delay the natural course of the condition?

  • What are the risks associated with the treatment?

  • What results can I expect from the treatment?

When considering medical treatment, ask your endocrinologist the following:

  • Does the treatment come with a comprehensive patient support system that provides services such as at-home injections, assistance on insurance coverage, and emotional support?

  • How will I take the medication?

  • How often will I take the medication?

  • How difficult are the injections for the medications that cannot be taken orally?

  • Can I do the injections myself or do I always need someone to do them for me?

  • What side effects could I experience?

  • What do I do if I have side effects?

Becoming informed about your treatment options is an important step towards empowering yourself when it comes to your healthcare needs.

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Check out the true-2-me guest editorial on treatment Considerations for Acromegaly

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