Be your own advocate. It pays off.

I can not say enough that you need to take your healthcare into your own hands. Please do not solely rely on your Doctor to get things done regarding referrals or what may be in your “best interest,” and do not rely on them as your main source of information regarding your current situation, diagnosis, etc. You need to be pro-active and research it yourself, investigate what options are available to you and which ones will be best for you. The reason I say this is because in dealing with my other issue, the Dysfunctional Uterine Bleeding, as mentioned recently, my Gynecologist wanted to push hormone treatment at me. In researching its effects on my particular cancer, I came to find that it could facilitate the growth of my brain tumour, something my Oncologist wasn't even fully aware of regarding my specific tumour. 

When I brought it to his attention, he did look further into it and advised against all hormone treatment. Hey, they deal with so much on a daily basis, I’m just glad he listened to me and took the time to look into it further. And hopefully I made a difference, in the fact that he’ll think about other female brain tumour patients and treatment options and connections to hormone treatments and their cancers down the road. But it left me in a lurch for treatment options for my DUB. I’m currently at 5 months of continuous bleeding, and this in itself can lead to endometrial cancer,  uterine cancer, or anemia due to blood loss. Not to mention it’s just really a pain in the ass. 

For whatever reason my Gynecologist has removed herself from performing any surgeries or deliveries. Not helpful.  So I searched for the “perfect” Dr and found one in Hamilton. She actually teaches at McMaster, so she’s got to be good, and if I have any surgical procedures within Hamilton, my Drs will be able to access everything immediately regarding my Cancer Care and my Drs on that front. It seemed like a match made in Dysfunctional heaven. So I called her office to see if she was accepting new patients, and she is for surgical procedures only. Sweet! I had a very wonderful and informative 20-minute conversation with her receptionist and I met today with my local Gyn to discuss that. She is setting up my referral to the Hamilton Gyn and says that she actually doesn’t like the Endometrial Ablation procedure.  

 So,  my Oncologist says no to hormones, my main Gyn isn’t partial to the EA (neither am I), my family Dr and Gyn both think that a D&C is a waste of time, so as I suspect, this is leaving me in a situation of obtaining a hysterectomy. One I will have to fight for. My body. My uterus. My cervix. My ovaries. But I’m “only 35,” and “no one will touch your uterus.” Really? This is bullshit. I’ve been bleeding constantly for 5 months now and because the Government thinks I MIGHT want to have babies at some point, I can’t have a procedure that will save me from potentially developing cervical or uterine cancer? Several times today my Gyn said to me she is really worried about me developing cervical cancer. Not something that I take lightly. Guess what? The health system hasn’t come up against Tara.  At least it hasn’t felt my full wrath. Yet. So I have researched all of the options normally available to a person experiencing DUB. They are as follows, and in the succession that a Dr apparently wishes you to try them. As you try one and it doesn’t work, try it again. When that doesn’t work, move on to the next treatment.

1.     Hormone treatment

2.     D&C

3.     Endometrial Ablation

4.     Hysterectomy

Seeing as I am unable to partake of option #1, we’d skip into #2. However,  #2 is quite useless, as mentioned above. It needs to be done under a general anaesthetic and is only a temporary band-aid solution that will last a month or 2 each time. Then there is endometrial ablation. Now, about that. I really don’t want to do that. A procedure done, again, under general anaesthetic, and sometimes has to be repeated several times only to push you into a Hysterectomy anyways. The reason I’m against the ablation is this: If a woman who has undergone endometrial ablation develops abnormal bleeding, the usual ways to evaluate this bleeding, such as ultrasound and endometrial biopsy, are not as reliable.

Further to that, while endometrial ablation doesn’t increase the risk of   uterine cancer, it might make early detection more difficult if I were to develop cancer years after the procedure, leading to a worse prognosis. Uterine cancer is usually diagnosed at an early stage – and then is almost always curable – due to the presence of abnormal uterine bleeding, which might be eradicated by the procedure. You can call me a hypochondriac if you wish, but these are real concerns and something that I must consider before undergoing any procedure. I do not want to partake of one procedure to fix one problem to only create another, or exacerbate another in the future.

And then there is the hysterectomy. The “last” option on the list, and the one with a few different options. It’s also one of the reasons I beg you to do your research. My girlfriends reading this, please take note of this if nothing else. There is the “old school” way of getting a hysterectomy, which is abdominally. Yes, it leaves a not so attractive scar, your Dr will definitely talk to you about the added risk of infection and slower healing time due to having your abdomen sliced open, but this is the way you want to have a hysterectomy if you are faced with needing one.

Why? See below.

The “preferred” method for Drs is to laparoscopically remove the cervix/uterus/ovaries or vaginally. Yep, pretty cool they can remove everything vaginally. The benefit to these 2 procedures would be that it’s minimally invasive (a lot less so than abdominally) and the healing time is much less. However, the risk far outweighs the comfort benefits, especially if you are having a hysterectomy to remove any suspicious fibroids.  I credit my subscription to PREVENTION magazine for tipping me off to this information, I then further investigated it, and it led me to the FDA’s website and warning against it. When doing the minimally invasive hysterectomy procedures, a Doctor will use a morcellator [1] to cut up anything they will be removing into small pieces. That includes your uterus, cervix, ovaries, any fibroids they may find, etc. In doing so the morcellator blasts all of those pieces everywhere inside your pelvic area before they remove them.

Importantly, based on an FDA analysis of currently available data, it is estimated that 1 in 350 women undergoing hysterectomy or myomectomy for the treatment of fibroids is found to have an unsuspected uterine sarcoma, a type of uterine cancer that includes leiomyosarcoma. If laparoscopic power morcellation is performed in women with unsuspected uterine sarcoma, there is a risk that the procedure will spread the cancerous tissue within the abdomen and pelvis, significantly worsening the patient’s likelihood of long-term survival. For this reason, and because there is no reliable method for predicting whether a woman with fibroids may have a uterine sarcoma, the FDA discourages the use of laparoscopic power morcellation during hysterectomy or myomectomy for uterine fibroids.

In the Prevention article I read, [2] the woman, Amy Reed, was undergoing a hysterectomy to remove fibroids, she had stage 1 cancer before going in for a laproscopic hysterectomy, she advanced to stage 4 after surgery, after the power morcellator used to break up the tissue, blasted cancer cells throughout her pelvic region. This happened to someone with known cancer, but the fact remains that women can have undetectable cancer being blasted around inside of them when going in for a “routine” hysterectomy. NO THANK YOU. I have enough on my plate to worry about. And when I saw that the FDA advised against the use of power morcellators as of 2014, it really made my decision quite easy. 

Please remember ladies, be pro-active. Trust your gut. And never take no for an answer. Oh yeah, and while Google can scare the crap out of you, it can also be a potential life saver. So now I sit and wait to meet with the new Gynecologist/OBGYN to discuss the surgical options available to me. I’m armed with a lot of knowledge and even more opinions.

~Tara