Rare ovarian cancer

[Green128]

Just wondered if anyone has been diagnosed with a low grade steroid tumour of the ovary? It is very difficult to find any information as it is rare. I was diagnosed in 2017 and had a full hysterectomy. It recurred in 2019 and I had major surgery to remove 15 lymph nodes and it has just recurred again. Am about to have another operation to remove more lymph nodes and possibly my kidney as the lump is attached to it. Apparently, chemo and radiotherapy do not work on this type of cancer.

[bamboo89]

I had never heard of this, but on doing a bit of research, steroid cell tumour of the ovary comes in three types - Steroid cell tumour NOS (not otherwise specified); Leydig cell; stromal luteoma. They may be benign or malignant and can occur in females from 2 years old up to over 60, though it is much less common in post menopausal women. It seems surgery is the primary treatment, but chemo is sometimes used; knowing which type of steroid cell you have might mean you can research whether the type you have is appropriate for chemo treatment. As you say, these types of tumour are very rare at around 0.1% of ovarian tumours, which does make it more difficult to research - I had a similar problem when it turned out had two types of OC, one of which was non small cell neuroendocrine cancer of the ovary, which is also rare and more often occurs in the lungs and was very difficult to find much information on. I hope you can find out more...

Best wishes

Miriam

[Green128 in reply to bamboo89]

Thank you so much for replying. All of my hospital letters just say ‘steroid cell’ so I will need to check with my consultant.

In 2017, after a hysterectomy, it was staged at 1A and the general feeling of my consultant was that the cancer should not come back (although there are no guarantees). This now is my second recurrence and I have been told that it must have been further advanced than they originally thought in 2017. They say that chemo and radiotherapy are not very effective so operating is my only option. My consultant has said that major surgery in the future may not be possible as it is not safe to keep operating in the same area. Also, since it has recurred twice, then it is more likely to return again. It would be comforting to know if anyone has got as far as a second recurrence and surgery and the cancer hasn’t returned. I can’t help feeling despair.

[bamboo89 in reply to Green128]

Oh I hear you, I'm sure you are feeling despair; that particular journey through both fear and despair is certainly one I know well, and even now, it overwhelms me at times, but it did lead, on my part, to an acceptance that this disease is going to kill me if nothing else does first, and that it's only a question of when. I am having more chemo now, but I know it won't work for long, although it will be give me a few more months, hopefully up to autumn/winter this year. And when it returns, will I try to kick that can down the road again with a different, nastier form of chemo just to get a few more months? I am not sure I will, am hoping I will be brave enough to refuse, because the chemo damages as many healthy cells as it does diseased cells. The treatment I am having now is classed as 'palliative' - no one is pretending it will cure the cancer now, not even the medics, but if I'm honest, after my surgery in January 2018 when I was staged at 4b, and with the forms of cancer I had, I never expected to live longer than two years at most anyway. Yet here I am...

Cancer is an unpredictable beast; I recall the oncologist answering, when I asked if adjuvant post surgery chemo would give me more time, that he didn't know, but in theory yes; but he didn't know how long I would live with or without the chemo. That he had people who left treatment with a very good prognosis, but were gone within a few months, and others who left with a mediocre or poor prognosis but were still alive ten years later, and they don't know why.. So I decided back then to work on accepting I'd effectively been issued my ticket to leave, I just didn't know when my number would be called. I visualised it as being in a rowboat on a boating lake, where your boat has a number and at some point, the boatman shouts across the water, 'come in No. 7, your time is up'.... but in the meantime, you continue to row your boat about in the sun and try to enjoy it, make the most of it, live. And that no one gets out of here alive anyway, do they, it comes to us all at some point, in some way, and that I was lucky it hadn't happened to me when I was young, or 45 or 50, which does happen to people, all the time. Course, that's all very well, apart from the eternal and pesky question of 'hope' because even though I know the facts, that little bit of hope never dies and can lead to more than one disappointment...and tumble into fear and despair again. I also did not feel my cancer was an alien enemy, it was just my own cells with the wrong programming; I've always found this mantra of 'thinking positive' and 'fighting' irritating, I don't feel like that, my cancer and I live together right now.

If you are really struggling emotionally, your Macmillan service should have a psychologist available for you to see; I went to our one after my surgery when I was wrestling with this emotional stuff, and to help me to decide whether to bother with adjuvant chemo because my instincts were telling me no. The sessions were very helpful and helped to clarify things for me, so perhaps you could seek that help. Otherwise, yes, ask which particular form of steroid cell you have, and quiz them for stats on the effectiveness or not of chemo... and you could try to seek a second opinion elsewhere if you have the energy.

I hope this rather long answer has been helpful, my apologies if it hasn't🤔 I wish you all the best on your journey - it's one most of us on here are taking, though not one we would have chosen. Take care, keep us updated please, good luck with the surgery...

Miriam

[meaty]

yes I have recently been diagnosed with low grade serious carcinoma. first time and will be having my surgery on 16th march . Overcome are great they have leaflet just on low grade . wish you all the very best xx

[mishmosh]

Might this organisation be relevant?otstregistry.org/

There's also a sertoli leydig group on Facebook.

[Green128 in reply to mishmosh]

Thank you, I will have a look.