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[Lynikinz]

Hi everyone
I’m a newbie to this forum.
I appreciate you taking the time to read my post as I know it’s a long one 🫢

I began my menopause journey when I was 40, confirmed by a blood test and started on HRT at 41. Everol sequi patches
I remained on them for 18 years until February this year when I was diagnosed with breast cancer.
The receptors for which are oestrogen and progesterone dependent so obviously I was told to stop the patches.
So back to menopausal symptoms with a bang. This time round things were twice as difficult as along with the fatigue, hot flushes and night sweats I now have vaginal atrophy.
When I visited my GP back in March regarding this she just told me to buy some lube and gave me a blood test for CA125 marker as I had tenderness in pelvis which I did remind her I do suffer with sue to IBS.
I asked her what this marker was for and she said ovarian cancer. Speaking to my nurse she advised me that I should put blood test on hold until I’d had my surgery as it could give a false reading.
So I had first lot of surgery in May and then had second surgery last week.
Both breasts were cancerous and I had lumps removed.
Now I’m waiting for letter to discuss outcome of sec op and to see if the margins were clear….
The VA is driving me mad and I’m currently using Hydromol ointment to wash with and after using the loo each time to wipe with. I’ve ordered some YES vm as I’m been advised that is very good.
I just feel totally worn out atm much like a costume of a woman.
I know coming off of HRT after such a long time was going to be tough as well as going through two operations in two months but I wondered if anyone out there can reassure me that there is life after all this
I suffer from IBS and anxiety as well so it’s hard to keep going at times. I’m fed up with feeling tired as I’m not sleeping much and don’t think I will until I know if the cancer has been eradicated.
Once that’s sorted I’m onto radiotherapy and prob letrozole tabs for 5 years - 😕
Thanks again for reading

Lynn

[Penguin]

Gosh you have been through such a lot, I really feel for you. No advice as such as I'm still peri and at the start of my hrt journey but I just wanted to welcome you to the forum, wish you a speedy recovery from the second surgery and say I reappy hope you feel better from all of this soon. Loads of very experienced people on here so hopefully they can help reassure you that there is a way through xxx

[CLKD]

Quality of Life?   How certain is your surgeon that the HRT may have caused the disease?  Is there evidence at histology ?

Do U mean that you had mastectomy or lumps removed if 'both breasts were cancerous ' ?  I had lumpectomy [1990s] which showed changes at the margins.  Had a full body bone scan followed by 4 weeks radiation therapy . The area zapped looked like they had been in the sunshine, all on their own  and I was given a steroid cream at the end of treatment.  Something to discuss B4 you begin?  It took longer for me to get undressed than to have the treatment  . 

Were lymph glands removed to check for signs of spread?  This should determine which HRT would be suitable. 

I don't think that there is any reason not to use VA treatment to ease symptoms.  It isn't supposed to infiltrate the body outside the vulva/vagina.  Not many medics are aware of how difficult this is to live with.  How R the various wounds healing?  After all these years the drain site remains tender to touch.

Take a list to your next appt..  Ask ask and make sure that your medics are aware of how important HRT is.  How has the IBS performed?  Do you have slow transit or rushed events?  Anxiety can be treated with medication: I found 'valium' useful - after 3 months of daily treatment I used 'as necessary'. 

Let us know how you get on .   

[Emma74]

Hi Lyn

I don't have any answers to your questions but wanted to send you a virtual hug. All you can do at this stage is be very kind to yourself and know that things do and will get better. I work with cancer patients and things do improve. You've just had surgery which can knock you for 6 as well as everything else. I'm sure there are other ladies here that can recommend help for the VA. Have you tried the Macmillan website for support as I'm sure there will be lots of women in your position who can offer reassurance. x

[Lynikinz]

Hi ladies
Thank you for your replies ☺️
I am on the macmillan and breast cancer now forums so I’m well versed along with fb etc
The consultant/ surgeon told me re the HRT in his opinion has contributed to the cancer.
I had a bilateral lumpectomy and further surgery to determine margins. They took one lymph gland each side which were clear. I am to have radiotherapy both sides in sync so I know I’m going to be wiped out and it will def take longer but obv after I know outcome of surgery.
The wounds are healing ok but as they went in again to same wound on one side I look like I’ve been kicked by a horse!
IBS can be alternating and I’ve had it for almost 30 years alongside anxiety as they feed off each other

I have a lovely little journal that I take with me to appts and write in to update my ‘journey ‘
I think I’m just feeling low after everything and obv when you’ve had surgery it knocks you even more.

I have a list of questions that I want to ask
but need to direct them to the oncologist as the consultant is not v knowledgeable on menopause he said 🤦‍♀️

Thanks for your well wishes
Lynn xx

[CLKD]

Wouldn't you think: after all these years: that breast surgeons would work alongside oncologists ?  I would also ask lots of questions about HRT in further.  There is a breast surgeon who suggests in his book that when necessary, ladies should be allowed the option regardless of diagnosis.  Sorry, can't remember his name off the top of my head 

Personally I wouldn't be satisfied with 'in my opinion' - I would want clear evidence whether HRT had contributed.  In my case I had used 4 weeks of HRT many years prior to my finding the lump. If I was told that they really don't know yet, that's different. 

If HRT is so dangerous why aren't we advised to have bilateral mastectomy because HRT may be essential for many    .  Do impress that you may well require vaginal atrophy treatment, which is due to a loss of oestrogen. 

I was OK mentally until after being discharged from the 4 weeks radiation treatment: it was a very hot Summer; the coolest place was in the treatment room; so I don't know how much the weather contributed but me, the dog and 2 cats went to bed every afternoon: my treatment was at mid-day. if I was late going up, the Siamese would stand half-way up the stairs ...........  .  Once I was not at the Hospital daily I dropped emotionally for a week and occasionally would shut myself away for a Very Good Bawl.  Also I got fed up with being brave for everyone else 

I opted for tattoos to align the laser lines rather than blue paint which would have meant no baths for at least 5 weeks  .  Keep hydrated during radiation treatment, keep OUT of the sun - I had a straw hat which I would decorate each day to compete with the Jamaican lady ahead of me ..... she wore such brilliantly colourful clothes and her hat always won  . 

When I had my first surgery I came back with a single stitch, at the end of which was a plastic bobble.  When I went back again for checking of lymph nodes, I requested a toggle on each end: the surgical notes came back "Completely out of toggles so a bobble will do".  Only in private practice  . 

This too will pass.  Let us know how you get on.