In the last month or so I have been greatly helped by reading the experience of others with serous endometrial cancer. I was diagnosed stage 3c1 in October and have started chemotherapy. What I’m not coping with is my mind, I keep wondering just how aggressive the cancer is, I just can’t see a way ahead. I’m also angry that as I have the Braca 2 gene I had already had a double mastectomy and oopherectomy but my oncologist now says that the cancer I have is Braca2 linked. I feel I went through these operations for nothing. My husband is supportive but I do feel so alone. I’m sorry to moan but I really am having trouble feeling positive. One reads such negative things about serous,
Hi I'm so sorry you're experiall these negative thoughts. Gentle hugs coming your way. As one of the serous ladies here and also 3c1, I can certainly relate to your worries about how aggressive the cancer might be, although I don't have the added worries about the braca gene. My experience of chemo was that whilst I tried to keep positive, there were days when I really struggled with all the negative thoughts. Anger, fear, sadness are all familiar emotions to me and I'm sure to lots of other ladies here. Do speak to your CNS as she may be able to help you deal with some of your fears or she may arrange some counselling for you if you both feel it would help. One thing she advised was that I shouldn't keep googling about serous and statistics. It's a bit like picking a scab - you never get to process and deal with anything because you're always opening up the wound and feeding your mind with the negative stuff.
There are no easy answers I'm afraid. We each have to take time to process these things and find our own way forward. Talking on here helped me, as did some informal counselling from my vicar and his wife. I'm a practicing Christian so I find prayer helpful and have good prayer support from a few people at church. My family are wonderful but I don't always want to burden them - they need to move on from all of this as much as I do. Some ladies find meditation helpful. I knit because it occupies both hands and enough if my brain to help keep some of the negatives at bay. It helps, I think, to become proactive in managing our own recovery, to make changes that enhance our health and wellbeing (physical, emotional and spiritual), and to do the things we enjoy when we're able to. papermoon is correct - I'm 2yrs 8 months on from treatment ending and so far so good. The emotional stuff is hard - sometimes harder to deal with than the physical stuff we go through. Yes I sometimes have bad days when the what ifs crowd in and take over and I have to work hard at stopping them from taking up squatters rights in my mind, ( often says this) Having said that,I've found that as time has gone on things have got better. I do worry about the possibility of recurrence but I refuse to let cancer define me. The good days now outnumber the bad days and I hope that in time this might be your experience too. Where there is life and love, there is hope xx
Hi
I am so sorry you are going through this. I was diagnosed with stage 3c2 uterine serous carcinoma in 2014 and I subsequently found I carry a brca1 mutation that is the probable cause of the cancer. We are a rare breed and some oncologists doubt our existence. They keep going on about the four distinct types of USC, none of which is brca related. There’s the odd interested clinical geneticist, such as Dr Kulkani at Guys Hospital, but interest is low.
I can imagine you do feel it was futile to have gone through all that surgery only to have the cancer appear in your uterus. It is extremely unusual although there was a piece of research carried out by Duke University a few years ago looking at the incidence of womb cancer in brca positive women who had undergone removal of their ovaries. From memory the rate was slightly less than 2% which the authors felt warranted considering hysterectomy alongside removing the ovaries in brca+ women.
Much good this is to you, of course. It is the fruit of my I obsessive research into USC and brca genes. I have to agree with Fairycake and her comments about picking at a scab. Reading the ghastly research papers about USC, which invariably start by pointing out the poor prognosis, is not helpful and serves mostly to ratchet up the anxiety. Just occasionally, it will take you to where you need to go. In my case, my research led me to Dr Kristeleit at UCLH who was able to put me on a PARP inhibitor when the cancer recurred. There is more detail in my profile if you’re interested. So while my general advice would be to step away from Dr Google (who is notorious for his appalling bedside manner and frequent misdiagnosis), I do think understanding your disease has its role. It’s knowing when to stop that is important.
Chemotherapy is a tough gig. I’ve been through it three times and my experience is that depression is a side effect. I think it’s partly biological in origin - chemo stops cell division and this is as true of centres in the brain that appear to be linked to mood as it is of blood cells. But it’s also the sheer grind of feeling unwell, losing our hair, the low level anxiety about picking up an infection, the change in how we have to live our lives and so on. In my experience, it lifts. It’s just another thing to be endured and to tackle as best we can. My best recommendations are gentle exercise, drinking plenty of water and making sure I have something to do (I’m also a knitter) and something to look forward to.
I can understand how you feel alone. I hope this community helps lessen that feeling. There’s no law that says you have to be positive all the time. It’s the realisation that you don’t feel positive and knowing when that’s normal and when you might need help that matters. I hope you’re glad that you’ve reached out with your post today.
xxx
PS: here’s a link to that paper I mentioned about brca and USC
https://www.google.co.uk/amp/s/www.livescience.com/amp/55246-brca-gene-breast-uterine-cancer.html
And here is a slightly more user friendly summary of the current state of knowledge.
https://ovarian.org.uk/news-and-blog/blog/brca-hysterectomy/
Thank you for this. I hoped you would respond because your posts do help me with your common sense approach, I agree the cancer should not define me. Both my younger sisters have died of cancer in the last few years and I suppose because I had the preventative surgery I thought I had escaped it,
Thank you again and I am glad you are keeping well.
I have just read your profile. Why should I complain? Thank you for,your very helpful message. I do try to keep myself busy and your advice is sound. I am so pleased that you are keeping ok. Thank you.
I was recently diagnosed with serous womb cancer. I am not aware of having the braca gene, if so I have reached an advanced age without it. My first consultant told me that he regarded it as semi aggressive and curable. The CNS nurse told me the same thing. There are various reports out there which give it a poor prognosis but it is relatively recently that researchers have started to amass a large body of data on it, and from my reading, they are reviewing and improving treatment methods all the time.
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