Possible endometrial cancer after breast cancer

My breast cancer was discovered in 2014 and was oestrogen receptive. After surgery chemo & radio I was put on zoladex to suppress my ovaries which I took for 6.5 years. I was also put on tamoxifen for 9.5 years. My oncologist said these meds would put me in a ‘chemical menopause’. Over the last 10 years I’ve experienced significant menopause symptoms, especially hot flushes, achey joints, brain fog and zero sex drive. My hair is much thinner and I didn’t have a period from 2014 until 2023 when I had 1 single medium bleed for a week. There was no further bleeding until a recent very heavy bleed lasting from 18/11 to 28/11.

Following this heavy bleed and because I was deemed ‘post menopausal’ I went for an ultrasound and they said I had endometrial thickening and a polyp and have booked me in a hysteroscopy next week.

Simultaneous to this, I have had recurring iron deficiency anaemia for the last 2.5-3 years. I had no history of low iron prior to this. On approximately three occasions my GP prescribed 3 months of iron supplements. However within a few months of stopping the supplements I was anaemic again. I consulted a haematologist who suggested I should be on permanent iron supplements as it was possible my body wasn’t storing iron properly. He wrote to my GP and in January I started ongoing iron supplements 20mg a day.

Mid October I had my bloods done (they are done every 3 months due to other meds I’m on). The results showed my iron and transferrin saturation were out of range (too high). I had been feeling so poorly and fatigued I was concerned the iron was to blame. But the GP and hematologist both suggested I keep taking the iron as my hemaglobin was still low. I wasn’t happy about this so we compromised and reduced the daily iron by half to 10mg a day. I read about Functional Iron Deficency (FID) and wondered if I might have this since I have enough iron in my body but it is not being absorbed hence my continually feeling exhausted, cold, itchy skin, brain fog etc. However my GP was unwilling to speculate why I still had all the symptoms of anaemia despite high iron levels.

Following the recent heavy bleed my GP organised more blood tests which show my Haemoglobin is way too low and my platelets are way too high - the anaemia is back.

I am worried my ongoing issues with anemia could be linked to a possible reoccurrence of my breast cancer/ spread to my uterus.

The other thing my blood test showed, is my FSH is 12.5, way too low to be post menopausal. This is totally confusing for me but I read that some studies have found lower FSH is linked to endometrial cancer. Does anyone have experience of this?

I also developed osteoarthritis since having cancer and the last few months I’ve had horrible intermittent leg pain from my thighs right down to my feet FB. My knees are more swollen than usual too. This is now freaking me out as I read leg pain is a symptom of endometrial cancer.

I’m sorry to sound negative and moany, I’m just so scared it’s come back and I have 2 amazing kids who need me. The GP and consultants don’t seem to be joining the dots. I’m Autistic so I do ask a lot of questions and need to feel in control. Any advice or signposting would be greatly appreciated. Thank you.

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Hi lvt
I’m so sorry you’re having such a difficult time and not having much luck with your doctor.
I can’t comment on your situation as I haven’t encountered that but I wanted to say you’re definitely not alone on this forum.
It’s worse when you’re awake at silly o’clock left with your spiralling thoughts and no one to talk to.
If I may suggest something, what about speaking to your breast care nurse or perhaps contact a nurse through this forum and they may be able to talk through your concerns and suggest getting a referral to a gynaecologist/oncologist who is specialised in this area.
I know there is such a department as I’ve been sent there twice!!
I really hope you get to speak to someone very soon and they can pinpoint what’s happening with regards to your health.
Sending you lots of love and positive thoughts
Take care
Lynn x

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Thank you for replying and your kind support. I agree I need to speak to a nurse really. I just find it hard to communicate about this without getting upset. Being Autistic I find it easier to communicate in writing when it’s a difficult subject. I need to hold on for the hysteroscopy as at least I’ll have some definite answers then x

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Hi lvt

Thanks for posting on our forum

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Lisa

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Hello, its not quite the same but I had very heavy periods after 5 years of tamoxifen. They were quite debilitating and then endometrial cancer was a consideration. I had a hysteroscopy which showed overgrowth of endometrium. I had an endometrial ablation (as a day case) and it was brilliant, no more bleeding ever. I hope you can get your issues resolved swiftly. Best wishes.

Hello. Thanks so much for sharing your experience, it is very reassuring to know. I’m really glad you are ok now x

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Hi Ivt

Thank you for your post.

It sounds like you have had a difficult time over the past nine and a half years with side effects from breast cancer treatment which have caused menopausal symptoms. This as you describe can be very distressing. You also explained in your message, you are having investigations for a heavy bleed and are booked in for a hysteroscopy in the next few days. You could consider taking a friend or family member with you to the procedure for support; just ask the hospital beforehand. It is understandable you are feeling scared and asking lots of questions. As you say, you need to feel in control as this helps manage your autism. There really is no need to apologize for how you are feeling.

We hear from people who like yourself, notice new symptoms such as heavy bleeding and need to have investigations to find out the cause. It is good to hear that investigations have been sorted out for you. Following treatment for breast cancer, no matter how long from diagnosis, many people worry about it coming back (recurrence) and breast cancer spread . You’re not alone in being anxious about this. The uncertainty and fear of breast cancer returning or having a new cancer like an endometrial cancer is very real and brings uncertainty. Every ache or pain or new symptom may frighten you.

Some people benefit from talking therapy, such as counselling, to help them explore ways of managing these worries and concerns. You can speak to your GP or treatment team about this. Mindfulness can also be helpful. Also, as @Lynikinz says, it may be helpful to call your breast care nurse if you are still in contact with them or ask if you could speak with a gynecology oncologist or gynecologist specialist nurse You could try and call the hospital and ask if this is possible.

It sounds like you have had a lot of difficulties with anemia too and this is causing you to worry about cancer spread . It is difficult to say what the best course of action is for you, but again it sounds like you can talk things through with your GP.

We offer a range of free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in.

For more details about all of these services, please see the information on the link, or call our free helpline.

Often, we hear from people like yourself who tell us they are autistic and have lots of questions. We appreciate you mention it is easier for you to communicate in writing, but do feel you can call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, If you have hearing or speech difficulties prefix our number with 18001 and the call will go through Relay UK. Our helpline has access to telephone interpreters if language translation is required.

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Best wishes

Helen

Breast Care Nurse

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As we are unable to monitor for further replies, this thread will now be closed. If you have any additional questions or would like to provide feedback, please start a new thread, call our helpline, email us or request a call back.