Hrt/Ovarian cancer/Osteoporosis

[ricky23]

Hrt after ovarian cancer?? Added problem, ive just been told im in the early stages of Osteoporosis (result of dexa scan) my surgeon doesnt do hrt when a patient has been diagnosed with ovarian cancer. So what can i do?? My lovely mum died from Osteoporosis just over 2 months ago, a horrific death believe me. I cannot go thro what she did. I want hrt but if my surgeon wont agree what can i do?? Anyone got any advice, im gutted, its bad news after bad news at the moment. I was diagnosed stage 1c grade 3, opted out of chemo ( long boring story) and im pretty glad as chemo is also a bad thing for anyone with osteoporosis, according to google!!

[Hidden]

Hi Ricky,

I am sorry that you have this added problem,so sorry that I can't be much help with your question,not had any experience with osteoporosis, but just wanted to say it is lovely to hear from you... and hope you will find the answer to this soon, sending you my best wishes and love x G x

[ricky23 in reply to Hidden]

Oh thank you so much Gwyn, its lovely to hear from you too. Im really hoping i may get some advice, maybe someone on here has been thro the same thing. Hopingthings are ok with you. X

[Hidden in reply to ricky23]

You could give the Ovacome helpline a ring tomorrow they might have come up with this before, and might be able to advice the way forward... no harm in trying... if they can help they will....speak to Ruth Payne on 0845 371 0554

[Hidden]

Hello,

I understand your doctor's reluctance to prescribe HRT after ov. ca. as there is evidence that some ov. ca.s can be 'encouraged' by it (not all, though - so a specialist opinion of your cancer and specific treatment is what you need). Can you find such a specialist for a second opinion?

On the subject of what you can do for yourself (give me an opportunity to wrest my treatment away from the medics and their 'one-size-fits-all' approach, and I'll take it!); you would do well to read 'The Magnesium Miracle' by Carolyn Dean. Magnesium has been overlooked by mainstream medicine because it's action in the metabolising of other minerals and vitamins, and in functioning in general is so complex that it does not easily give up research evidence. Low magnesium is a factor in menopause and osteoporosis.

I was grossly low in it after surgery and chemo, and it caused me difficulty.

Worth a look!

Very best wishes,

Isadora.

[ricky23]

Thank you Isadora, will look into that. My daughter was given magnesium before delivering her baby as she had eclampsia and it was the magnesium that saved her life, so i haveheard of it before, thank you. Got some research to do now!!

[Whippit]

Dear Ricky

I'm so sorry you've had such a dreadful time losing your Mum to osteoporosis and now the diagnosis that you are in the early stages of this disease in addition to OC. I'm just wondering whether the problem is exaggerated for you because of your personal recent experience of the late stages of osteoporosis - and that in talking to the doctors perhaps you will discover that your early stage osteoporosis can be managed more effectively than your Mum's given the age difference.

As you can see I'm not a medical person in any way and I'm floundering around as much as you looking for a solution to ease your worries.

I do feel you should be given a multi-disciplinary consultation and that you should be encouraged to explore with them the positive aspects of any complimentary therapy that might help. I think I'm coming from the same place as Isadora.

Please let us know how you get on with this. Sending all good wishes. xxxx love Annie

[ricky23 in reply to Whippit]

Thank you Whippit, what you say makes a lot of sense and im very grateful. My mum died the most shocking death and i am so glad she is out of the endless pain, im so glad she isnt here to discover i now have it. I feel very flat at the mo, struggling with xmas, but want to be positive. I see the hosp on 24th dec. Now waiting for bloods to come back inc the dreaded ca125!! Now i know why mum got osteporosis, no hrt after her hysterectomy at 47, she didnt have cancer, but never got hrt, tragic really.

[Whippit in reply to ricky23]

Dear Ricky

I feel for you so much. It's desperate to feel unhappy in the run-up to Christmas when there's an expectation from everyone that we'll be full of the joys of the season.

I hope your nearest and dearest understand how you feel. If you feel everything's getting on top of you I'd see your GP. I'm not one to take anti-depressants but I know they can just give you the little break you need at times of crisis which gives you the space and energy to tackle the real problems.

Tina's advice is much more practical than anything I can suggest over osteoporosis. It's worth taking this to your GP too just in case it would be helpful to take vitamin supplements.

I never knew we can't absorb enough Vitamin D from our food. The Budwig Protocol recommends spending some time in the sunshine each day and that seems to me like good advice.

Take care and be kind to yourself. Have a rant on here if you feel you just say it again to your loved ones at home. I shall be wondering how your hospital appointment goes on Christmas Eve. Perhaps it'll give you that little fillip to enjoy Christmas Day itself.

with love, Annie xxx

[TinaWright]

Hi Ricky,

I haven`t yet read everyone elses take on this, so please forgive me if I repeat what others may have already said.

HRT is not good after OV cancer, but then I do think it may depend on cancer type, stage and maybe even the grade, because we do hear from some ladies who happily take HRT after OV cancer.

I did have chemotherapy and I had a bone density scan a couple of months ago.

I now have the diagnosis of early onset osteoporosis. I have no idea if this is down to the chemo or the fact that my grandmother died from osteoporosis, she had been in a wheel chair since her late 20`s - I am 54 and only just started with it so I guess mine is an age thing and maybe chemo related rather than a inherrited factor.

Your GP can perscribe medication which will prevent the disease from generating, slow it down most certainly or even reverse the disease if it is caught early enough.

You do need to be taking a high strength calcium tab + vitamin D. Perscribed from your GP.

Vitamin D defieciency prevents us from obsorbing calcium, it needs D vit to stick to our bones, so often we are asked to take both.

Most cancer patients are left with D vit deficiency after chemo, Chemo thins the skin and then the vitamin D can not penetrate through the skin properly.

Having said this about 75% of the Uk`s population have a D vit deficiency. Those with dark skin tend to have low levels or deficiencies, those of us with pale skin and easy to burn skin obsorb more D vit from the suns rays.

We can not obsorb Vit D through foods, Mushrooms is the only food that has vit D and we couldn`t possibly eat enough to make a difference. Not sure how on earth science make up the vit D pills? I`m baffled about that one I have to say but there we go!

Have a good ol chat with your doctor and ask him/her about taking supplements.

My friend has also been perscribed medication, she takes this for two years, then has another exray, but is confident she will be able to justv continue with the calcium and maybe D vit for the rest of her life which is a small thing to do.

Take care from Tina xxx

[ricky23 in reply to TinaWright]

Ive been taking vit d and calcium for a while, and had hoped there would have been betternews but not as yet. I had anorexia at 16 and i know that caused damage.... self inflicted. They say osteoporosis is often inherited, mine is i now know. Being in a wheelchair in their 20S thats awful. Age and chemo clearly has something to do with it im sure. Im so glad so many of you are prepared to share your experiences and thoughts, a huge help to me, thank you.

[VickyEm]

Hi Ricky

So sorry to hear about your mum, on top of everything else. Its a bit like the buses sometimes, everything happens at once. But there are supplements you can take which are not HRT.

I have recently been diagnosed with osteoporosis having never taken HRT since my hysterectomy 13 years ago when I was 29.

I have been prescribed Alendronic Acid, which you take one a week and Adcal D3 which is calcium and vitamin D to take twice daily, which i have to say is a right faff and reading your blog has reminded me that I have forgotten to take it - again! Anyway, presuming I can remember to take it, have been told that this will improve my bone strength and so will stop any further deterioration and may even improve the situation. There are no hormones in any of this and so it is safe to take after OC..

I think you should definitely take something due to your family history. You can even go and buy calcium and vit d from the boots if you like, but you should be able to get it on prescription, which means it is free as you should also have a medical exemption certificate due to having had cancer. You can use this for all your prescriptions whether they are related to the cancer or not. (we have to have some perks, right

Vx

[ricky23 in reply to VickyEm]

Im waiting for bloods to come back, and then will see my consultant at hosp xmas eve, my hubby wants me on hrt asap, if i had to choose i would go for hrt everytime, i just cannot comprehend a life like my mum had which was in the end zero. Thats why i didnt have chemo, i want quality not quantity, my doc agreed. I have a prescription from my gp. Thank you so much for your response it has certainly helped me!!

[Lily-Anne]

I have just had the HRT conversation due to my degeneration of the spine, and have been told absolutely no, they won't even consider it with a gynae cancer as most are hormone driven, it would be too much risk. I was diagnosed stage 1 grade 3 in September, and am due to start chemo in January, this is not combination drugs so it was considered the better option as the taxol has a high incidence of joint problems.

There are options. Why not have a chat with your GP.

LA

[ricky23 in reply to Lily-Anne]

Im at the same stage as you.... stage 1c grade 3. Its good to find someone else in the same boat so to speak!! I didnt have the chemo, my own decision. Im sure my consultant will not agree to hrt. Im going to see what else is there for me, but i dont think theres much. I do feel ive been left to it. Hoping 2013 is a better year, not been a good year. Losing my mum wasworse than the cancer frankly. Thank you for your reply im very grateful. Taxol was offered to me too, but i just couldnt take the plunge, the info my,gp gave me did mention chemo and the link to osteoporosis.

[Lily-Anne]

I didn't want to take the chemo option but decided that if it does come back then I at least took every precaution to help myself. When I lost my Mum in 2009 it was unexpected she fell over getting a book from the book shelf and banged her head on the wall, I could really do with her being here right now, I don't think you ever recover from losing Mum just learn how to live with it.

Are you still happy with your decision, I know that you have concerns about osteoporosis but there is always something to worry about, I'm about to ask my doc for a test to see if I'm susceptable to TREM2 and I have the feeling they are not going to have a clue about it. Have you asked about 677C>T when you saw your GP?

LA x

[ricky23 in reply to Lily-Anne]

Im so sorry you lost your mum, isnt it hard without them?? I feel very empty without mum, but its only been a couple of months early days. Ive never heard of trem2? Have you had surgery etc? Had mine late feb this year. Feel good health wise really. Got an iffy bladder waiting for scan to see if i need a bit of help ie a pessarie to help open bladder as i constantly have infections. No i dont regret not having chemo, i didnt decide lightly, myhusband totally agreed and is a great support. I am anxious it will come back but im sure everyone feels like that. How are you doing??

[Lily-Anne]

I had two operations the first was to remove a benign cyst and ovary, it then transpired it wasn't benign so had my hysterectomy in October. Bladder not as strong as I'd like, am jealous of those on here who are religious with their pelvic floor exercises. Feel quite tired still am having a few hours at work pre-Christmas but then I'll have to see how it oges.

My cousin has bone marrow cancer, she has monthly bone infusions to strengthen her bones, is that available to you?

LA

[Hidden]

I mentioned this to my other half who net straight out to boots, bless him. Asked the pharmacist and came back with Osteocare, a daily supplement with magnesium, vitamin D and calcium -- this does seem to be the magic combo. Available over the counter.

My mum had osteoporosis too - but I had conveniently forgotten this. Guess I need to start taking care too...

[ricky23]

Amazing thank you for the info, we are hoping the consultant will offer some support but they havnt really offered much since diagnosis. Got to say do feel alone with it. But thank you all x