Rare Ovarian Cancer - SLCT

Hi DezzyM and welcome to the Ovarian Group. 

I’m sorry to read of your diagnosis-it can make it harder to connect with others in the same position when you have a rare variant of any cancer. However, now that you’ve reached out in the group, other ladies might come along who’ve had this diagnosis too.

It seems that even your medical staff have limited experience so I wanted to suggest a good charity organisation which may provide some extra information for you, and the chance to connect with others as they also have an online forum.

Ovacome

I hope you’ll still keep in contact here in the ovarian group and let us know how things go with your CT scan and proposed treatment plan, and I wish you all the best with this.

Sarah xx

I'm so sorry to hear of your recent diagnosis. I haven't been posting much on here lately because my 1st chemotherapy treatment affected me quite badly. I lost all of my hair after just one Paclitaxel treatment! (I'm probably more sensitive to this medicine more than most people usually are.)My dose and medication type has since been changed. I had my 2nd treatment last Friday and so far the side effects are no way as brutal as the first. Having said that my 3 day course of steroids end tomorrow so I'll probably have a few rougher days ahead of me. 

While my cancer is not as rare as yours I did have two womb cancers occuring at the same time. Adenocarcinoma of endometrium & Omentectomy (and a tumour which had fused my overies together). My surgeon said the tumour size was the equivalent of a 20 week pregnancy. No wonder I was more waddling rather than walking pre-surgery! I had a total hysterectomy in June and my latest CT Scan a few weeks ago was positive. I have 4/6 chemotherapy treatments left. I hope and pray that everything goes great for you because cancer treatments have greatly improved and there are many more options for many different kinds of treatments if tried and tested ones do not work. I might have to have radiation and a few other types of treatment once my chemo ends, but I'm just taking each day as it comes and  I'm trying to keep a positive outlook. 

Keep us updated and please DM me if you prefer x

Hi DezzyM, 

I have SLOC stage 1a. You're not alone out there; I am also the first case for my team.

Hi Kasher,

Sorry for the late response, these past few months have been a blur but I’m doing better now. There has been a lot of complications with this rarity and the lack of information or knowledge on it is making things even more difficult but I’m trying to stay positive. 

I have another pelvic ultrasound tomorrow afternoon and some blood work, then I’ll have my review in April to see where I’m at. 

I really hope things are going well for you and I hope the treatments have gotten easier. You are right, there has been a lot of advancements in treatments, I just hope they can find out more about my specific type. 

Sending you lots of positive, healing vibes. You’ve got this! 
We’ve got this! 

Hey Ruby, 

Wow, so good to finally meet someone else in my predicament. It has not been an easy journey so far and it’s difficult to find peace or clarity when you’re alone. 

I am part of a support group in my hometown with other ladies with ovarian cancer but none of them have SLOC so their treatments, side affects, symptoms etc are all different to my experience so it can be disheartening - your message was a relief to read.

I tracked down 2 lovely ladies in other parts of the world (one in UK, one in USA) through Forums like this who are also SLOC warriors so they gave me some very useful info and things to expect. They have been amazing, they had information that my doctors didn’t even have. This is why these forums are essential and beneficial. 

I would love to chat with you in more detail, if that’s ok? 

Sending you positive vibes