Confusing journey of borderline cancer

[purejoy12]

Hello,

I’ve signed up here to find women who are in a similar journey as I am.

I quit my job in November 2017 due to overwhelming stress. Just four days after my last day of work, I went to see my GP to consult about my worrisome period in October (as I never had the chance to consult about it). My heavy period was something which I’ve endured for years due to my PCOS (polycystic ovarian syndrome). What made me particularly worried that time was the huge passing clots that made me wonder if I was potentially having a miscarriage (and no I never had one).

Ultrasound results showed complex cyst in my left ovary. My GP advised me that she was ruling out ovarian cancer. You can imagine the horror this news has caused me and my hubby. I was then referred to an OB-GYNE who advised that a surgery was necessary. I sought permission to travel overseas to be with my family (was booked prior to finding out this news) and my doctor agreed given that all my tumour markers were normal.

In March this year, I had my left ovary and tubes removed, polypectomy (in my uterus) and appendectomy. On the day of the surgery, what was originally planned as just a laparoscopic procedure was changed to include an abdominal incision to ensure my ovary was removed without causing any leakage. So recovery took longer than expected.

When I went to see my specialist doctor for the pathology results, I was told that I have low grade serous borderline ovarian tumour. He said it was both good and bad news. He explained that it was good because no one dies of borderline but bad in that I might have another surgical procedure.

In May of this year I was referred to Gyne-Onco who told me that I need to have BSO (right ovary and tubes removed), hysterectomy and omentectomy and called it completion surgery. I’m in my early forties and have not succeeded in conceiving a child so this news came as a major shock to me. So I asked to be given time to think and process. I had crying spells for weeks trying to understand what was going on and when I mustered the courage to come back to the Onco clinic and told them I was ready, I was given a different opinion by another specialist. I was told that as an option, I could keep my ovary for hormonal purposes (not fertility) but still need to have my uterus removed. This way I need not have to deal with surgical menopause. This doesn’t take away the 17-20% chance of recurrence though. I was sent away to see the menopause clinic to weigh my options but the specialist in the menopause clinic said if I wasn’t planning on having a child, completion surgery was the strongest recommendation and they can take care of my surgical menopause symptoms if need be.

My emotional roller coaster was more to do with my being childless and what this procedure meant more than the physical discomfort this can bring.

In the meantime my period got worse (the huge passing clots came back and with intensified abdominal cramps). I also had bleeding in between periods. So this helped me make up my mind to have the completion surgery done. We have also given up hopes of conceiving (long story!) with my age and other complications.

I am now scheduled for procedure by the end of this month (October) and I can only hope that there will be no more surprises after.

Life has changed much since then. I mean I am grateful for the fact that I have very little discomfort. Although they say borderline is better than an invasive cancer I still feel like I’ve been given the cancer verdict. At least it kind of feels that way. I’ve been in and out of the Oncologist clinic and life now consists of appointments and scans and blood works. I do have tightness in my lower abdomen which they suspect was tissue adhesion and I get this pulling sensation every now and then.

It’s a bit frustrating that I can’t get back into applying for a job while I’m waiting for the next surgical treatment. It was like the whole year stood still for me while everyone’s life went on.

I can’t imagine how isolating this condition can be. Most of the time, I don’t even find comfort in talking about it to my friends and family as sometimes what people say are more hurtful than helpful. I try to live normal and think that life’s normal so I can get by each day without dwelling on it. But honestly, it’s a very lonely journey to be in. Both my parents died of cancer and it’s so upsetting to think that my life could also end that way.

Thank you for patiently reading my story. I know each of us are walking in different levels of difficulty but it just helps to share with people who can relate to my own experience.

[Jen85]

Hi there. Welcome to the club that no one wants to join! You'll find lots of useful advice and support here. There are several of us here with a borderline diagnosis. I was one of them, but mine then turned cancerous so from my perspective you've made the right decision to go for full surgery...It's not fun hearing those words 'invsive tumour'.

There are also a couple of us who have struggled to conceive as result. I'm in my 30s and have had 2 miscarriages as a result. This diagnosis is tough in so many ways but we are all here for support x

[purejoy12 in reply to Jen85]

Hi. Thank you for your reply and sharing your experience. I’m sorry to hear about your diagnosis. 😔 I’ve been reading lots about borderline but haven’t really interacted with someone who had been diagnosed similarly so finding you on this site is very helpful and encouraging. Will read about your journey and hope all goes well with your treatment/recovery.

Xx Lena

[Jen85 in reply to purejoy12]

I've posted a few things over the years so feel free to have a read 😊 borderline is confusing but out of all the crappy choices, it appears to be the best x

[Juleswhee]

I have no knowledge of your diagnosis but want to wish you well for your upcoming procedure . Big hugs being sent across the seas xxJulia xx

[purejoy12 in reply to Juleswhee]

Hi Jules. Thank you for your reply and the big hugs 🤗

[Welshandproud]

This sounds devastating. I'm so sorry you're having to go through all of this. I have no experience of borderline but I just want to send you a big hug xx

[purejoy12 in reply to Welshandproud]

Thank you for your reply and all the best to your own journey too.

[Welshandproud]

Thank you lovely xx

[Lindaura]

Dear Joy,

What a shame. This cancer, that attacks your reproductive system, is really devastating.

You just learn to live with it and you have chosen the right path.

In the near future, after your body has recovered, you can think about adoption.

Many younger women living with this disease have done so and found this kind of parenting truly rewarding.

About menapause. I only use vegetarian alternatives called phytoestrogens. I eat loads of Tofu and tofu based protein products and switched to using soya milk in my tea and coffee.

I don’t believe that HRT is safe for us.

Additionally, if I were you, I would ask for a genetic test to see if you are prone to other reproductive related cancers, such as breast cancer.

So that’s my input.

I wish you good luck from here on out.

Best wishes,

Laura

[purejoy12 in reply to Lindaura]

Hi Laura. Thank you for your reply and sharing your experience. I’m glad you shared about menopause as that’s what I need to get ready for after my surgery this month. I love tofu and soy milk so that’s a great recommendation ☺️.

We have a history of breast cancer in the family so that’s what makes my situation with HRT tricky. But that’s another story.

All the best to you in handling your own challenges too.

[Lindaura in reply to purejoy12]

Please ask for the BRCA mutation test right away. If you cannot get it soon, you can use the site 123&me (I think that’s what it’s called). I used the Color test from the USA, while I was visiting family there.

These are honest and good labs and their results measure up to any lab here and cost a lot less.

Definitely worth it.

If I can manage an entire year without Ovarian Cancer, I will ask for a double mastectomy with reconstruction, so as not to have to have breast cancer looming over me, too. This is available on the NHS.

Kind regards,

Laura

[Maus123]

Welcome Lena. I hear ya, being a childless borderliner/low-grader myself, and diagnosed in my mid 40s. A lot of of your thoughts and feelings resonate with me. Want to write much more but am very tired after a long work day (yup, working again is definitely in the cards, even after two major surgeries and a set of chemo).

For myself, I was glad to have the full debulking surgery in order to minimize recurrence risk (and because I knew I was infertile anyway). I still recurred though; but hey, there is no certainty in this business and you just do the best you can at the time, which sometimes consists of following your gut regarding the treatment options on the table. My onc was surprised about the recurrence, so I think I just landed on the wrong side of statistics.

All the best with surgery. Let us know how you get on. Xx. Maus

[purejoy12 in reply to Maus123]

Hi Maus. Whoa. I can’t believe I’ll find someone in the same shoes as I am. Thank you for sharing and it’s encouraging to know I still have a chance to get back into the workforce. I’m sorry to hear about your recurrence. I’m fearing the same too and I get really paranoid with pains in my tummy these days. But I know the key thing is acceptance and I’m glad to find women in this forum who’ve ‘been there done that’ and still remains strong (like you). All the best in your own health struggles and recovery too.