Blog #3 Delaying Definitive Treatment: When, Why & Who?

16_9210501799.jpgIt may be reasonable to delay the ‘gold standard’ (‘definitive’ treatment) in some cases. These include:

1. THOSE UNDERGOING OBSERVATION WITH OR WITHOUT SUPPRESSION
Particularly in young patients who experience symptoms suggestive of ‘endo’, I often observe them over a period of time (6-18 months). I may do this if they are managing their pain without narcotics, and their physical exam and pelvic ultrasound are normal without subtle findings suggestive of ‘endo’ (subtle findings to be discussed further in a later blog). I often suppress ovulation with a low dose oral contraceptive if tolerated well by the patient. During the interval of observation, I want to rule out other potential causes of the symptoms, and carefully monitor the trends in the patient’s pain levels, other symptoms, and any changes on examination or ultrasound.

2. INFERTILITY
Although fertility rates increase (in our data) after ‘excision’ in all but stage 1 patients, I advise practitioners to work with ‘reproductive endocrinologists’, and make the decision to advise surgical excision jointly. We will discuss the rationale for delaying surgery in certain infertile individuals in a later blog. However, it is true that I have delayed ‘excision’ in patients in order to continue a specific infertility treatment on a trial basis.

3. ASYMPTOMATIC PATIENTS WITH DOCUMENTED ENDOMETRIOSIS WHO ARE CLINICALLY STABLE
The patient that presents with documented ‘endo’ but is clinically stable is a candidate for delaying ‘excision’ if they can be followed by an experienced ‘endo’ doctor. They must be careful to report changes in symptoms, and have office reevaluation at 6 month intervals. The doctor must be one that actively looks for any indication that the endo is advancing. A thorough history and careful examination are important to recognizing signs of progressive disease. Ovarian suppression is certainly an option in these individuals. Postmenopausal patients (with known ‘endo’) that are asymptomatic are in this group, and are slightly more at risk if on hormone replacement.

4. PATIENTS THAT HAVE HAD ENDOMETRIOSIS SURGERY RECENTLY THAT WAS NOT ‘DEFINITIVE’
Many patients are referred to an ‘endo’ specialist after a diagnostic surgery, or a surgery that left endo behind. They may need time to evaluate benefits from the surgery just performed, or additional time to plan for a ‘definitive’ surgery that may have additional risks.

5. PATIENTS WITH CO-MORBIDITIES THAT MAY INCREASE RISK
Important to the decision to perform any surgical procedure is the ‘risk’ to ‘benefit’ balance. The existence of other diseases, conditions, and genetic factors can significantly increase surgical risks. The decision to avoid or delay surgery is best made by each individual and her doctor after taking into account the possible increases in risk due to a ‘co-morbidity’. See also: Surgical Risks: What’s the Big Deal?

STAY TUNED FOR MORE TO COME!

Blog #2: My Suggested Treatment Plan

In most cases, I favor treating patients definitively (I will list the exceptions to this recommendation in following commentary).

This means that I recommend all endometriosis is completely excised from the body. Up to this point in time, the only way that I am aware of that this can be done is by surgical excision. While I favor doing this Laporoscopically (using small umbilical and accessory ports for instrument insertion), this treatment can also be done by laparotomy (open incision). The energy source used for excision is best left to the experience and confidence of the surgeon, but I use the carbon dioxide laser as my energy source (why will be the discussion of another blog; see also http://centerforendo.com/dr-albee-on-excision).
china6There is one critically important aspect of excising all disease that is often overlooked by surgeons. Subtle ‘endo’ can hide in peritoneum that looks atypical, but does not have one of the ‘classic’ appearances of ‘endo’. In order to have low recurrence rates, surgeons must not leave any disease behind. This means that the surgeon must be committed to removing abnormal/atypical peritoneum even when it does not have a ‘classical’ appearance. For more on this discussion, refer to one of my academic papers on the subject: https://www.ncbi.nlm.nih.gov/pubmed/18262141.

Definitive treatment in my experience is the most effective treatment because it:

– Results in the longest intervals of time before retreatment is required (our data continues to indicate that 80-85% of our patients are currently free from any clinical indication of recurrent ‘endo’);
– Results in a significant improvement in ‘quality of life’ and pain reduction scores on follow-up surveys; and
– Fertility rates improve in stage 2, stage 3,and stage 4 cases after excision

The emotional burden of being told that you have an incurable disease is enormous. I do not tell patients that I am going to cure them, but I do tell them that if they have any more ‘endo,’ they will be the exception and not the rule (understanding that not all pelvic pain is the result of endometriosis and there are often comorbidities which also need to be addressed). Please note my above figure on our percentage of clinically disease-free patients after excision.

In following blogs, I will discuss the current objections to definitive treatment, and the reasons that I feel it is not more commonly used. But up next, let’s talk about ‘when I do not recommend definitive treatment.’ Stay tuned!

Blog #1 July, 2017 “The Great Treatment Debate:” first, lets define some important terms…

Let’s use two large treatment categories:

  1. Definitive Treatment
  2. Non-definitive Treatment

‘Definitive Treatment’ includes all treatments intended to completely remove all areas of endometriosis.

  • Laparotomy with excision of all areas (using the technique and energy source chosen by the surgeon)
  • Laparoscopy with excision of all areas (using the technique and energy source chosen by the surgeon)
  • Hysterectomy/Oophorectomy only if all areas of ‘endo’ are also completely removed at the same time
  • Possible future techniques using external energy sources to remove ‘endo’

‘Non-definitive treatment’ includes treatment options intended to control the disease.

  • Observation: is really not in either category, but is still a ‘non-treatment’ choice if a patient’s diagnosis is uncertain, examination is normal, and pain is easily manageable
  • Disease Suppression:
    • Simple ovulation inhibition
    • Progesterone therapy
    • Anti-estrogen therapy
    • Advanced ovulation inhibition resulting in medical castration
    • Aromatase Inhibitors
  •  Disease Reduction:
    • Laparotomy with removal of some, but not all, ‘endo’
    • Laparoscopy with removal of some, but not all, ‘endo’

The standard treatment for ‘endo’ today has not changed significantly during my professional career. This approach is predominately ‘non-definitive.’ It begins with simple suppressive treatments, using stronger suppressive treatments when pain or infertility persists, and may include surgery with some disease removal, then ultimately leads to hysterectomy when the disease remains uncontrolled.

Sadly, I see many of these hysterectomized patients who actually needed only to have their ‘endo’ actually removed – excised – to achieve a satisfactory quality of life. Even worse, if all ‘endo’ is not removed at the time of hysterectomy, pain may continue despite the absence of the uterus or even ovaries if the patient is placed on hormone replacement (basically a good idea in the castrated woman of premenopausal age).

Why has the non-definitive treatment of the disease remained standard? Blog #2 will continue this discussion, along with my approach to treatment. Stay tuned!

My Endometriosis Experience…

Welcome! A brief introduction to my blog:

I began specializing in the treatment of patients with endometriosis (and unexplained pelvic pain) in 1990. At that time, I stopped seeing obstetric patients (something I dearly loved) altogether and launched the Center For Endometriosis Care, one of the first tertiary referral centers in the world dedicated to the disease. The Center, and the addition of a partner, provided me with a unique opportunity to personally have long term follow-up of a large group of patients diagnosed and treated for endometriosis through Laparoscopic Excision, or what I termed, “LAPEX.” I made the decision to focus on this group of patients because effectively treating the ‘endo’ patient was, in my mind, one of the greatest challenges that I faced year after year. I knew in my heart that there had to be a better method of treatment – LAPEX – and practitioners needed to stop failing our endo patients. Today, that group of patients has grown to over 5,000 hailing from more than 50 countries.

As I retired from surgery (in 2013), I have had more time to devote to helping the endo community with understanding the ‘modern concepts’ of the disease and to aiding patients with informed decision making. This blog is part of that effort.

Using a blog makes it possible for many people to get answers to the commonly asked questions I have received over the years (and still do today), in a manner that is easy to understand and at no expense. I also think will be a personally rewarding experience for me as well, and I am delighted to have you along for journey!