Can i hear some positive stories after treatment please x

[sensitiveme]

Hi Gelbel/Angela,

Glad to hear things are going so well for you post-cancer treatments altho’ of course it must be devastating to lose your husband like that. I was diagnosed with DCIS initially in August last year and have had the full range of treatments too, although no mastectomy, the surgery I did have has left some scars etc that are slow to heal up. What I’m wondering is, you mention “Zometa infusions”. was that to prevent bone cancer? I too have been advised to have Zometa/Zoletronic acid 6-monthly injections for 3 - 5 years. Although one of the very rare listed side effects sounds horrific, I do plan to go ahead with the injections - they will of course monitor me at the local Chemo unit, here in Ceredigion, which is quite reassuring. But I do have to have another tooth out and a type of filling done before I start on the injections; I might have to switch to a different dentist as the last extractoin I had was so awful/painful!! What was your experience of Zometa/

Looking forward to hearing from you

Take care,

Dorothy

PS I’m 67.

[william]

Positive story? I had a mastectomy in July 2024, and was feeling exhausted and sad for months after, so I bought a horse! As you do. He is a little white Lusitano horse from Portugal, and I saw him for the first time the day he arrived at the end of October. No longer being in the EU caused all sorts of bureaucratic hoops to jump through. I didn’t fully understand what I was buying, and am still figuring it out a year later. This horse dances! I have been riding for 60 years but have never had my own horse who was trained up to advanced dressage level He is a joy to ride, and every so often he offers me something really special like a flying change or passage, or Spanish walk. And we have discovered the new sport of Working Equitation, which combines dressage with obstacles. Look it up on You Tube. It is such fun. I will be 72 in December, and never imagined I’d own such a horse, or start a new sport.

I still suffer from various side-effects and after effects from the mastectomy. Exhausted, unfit, really bad memory, my eyesight is dodgy in one eye, tinitus is really loud, I feel worried ALL the time, and when I organise taking my horse for a dressage lesson or a W Eq clinic, I feel sick with nerves. Also I have lost my ability to reverse my car up to my trailer to hitch up, and to reverse the trailer. I am reduced to being feeble (after 40 years of doing it) and asking any handy person to help me. My dressage trainer has been extremely kind and considerate, and very encouraging.

Also I play ukulele with a group, belong to a Molly dancing side, do salsa dancing, bell-ringing, daily chores for my two horses, chairman of a charity, and churchwarden for our church. But I don’t do any of these things really well. My bad memory is a hindrance!

I sometimes feel like I’m just hanging in there, doing the best I can. I retired from my accounting practice last year, and really miss all the clients, but it was the right move because my brain gets in a panic when I have to deal with numbers.

Anyway, the horse is my positive story, my attempt to do something other than feel horrible.

[Gelbel]

Hi Dorothy

Zometa has been proven to help prevent secondaries in the bones for post-menopausal ladies. They noticed in giving to ladies with poor bone density that those who had BC has lower instances of bone secondaries than expected. So it was run as a trial and gradually rolled down to become standard.

I had a couple of infusions towards the end of my chemo. After radiotherapy I started on the equivalent tablets but they were a complete pain to take and totally mucked up my lifestyle due to the time having to be spent upright after taking them, so my oncologist swapped me to infusions.

It’s good that you are getting your teeth sorted before you start. As you say there are very rare iffy side effects. In this risk of verse age everything gets mentioned.

The side effects I had from my first couple of infusions were a little bit like when you have your Covid or flu jab - you feel a little bit fluey for a day or two.. After a few more there were basically no side effects - but I’d always have an early night just to sleep anything off if it was to develop. Really nothing much to write home about at all.

Hope that helps.

AnGELa

PS I’m 63!

[pongo1]

I am on Zometa and pretty sure it’s for stopping weakened bones rather than cancer per se . I could be wrong as I have had ( like us all) so much info about so many side effects I feel I could star on Casualty as a Dr! I have had 6 rounds chemo , bilateral mastectomy ( who knew you could get a different cancer in each breast.. one which responds well to chemo and one that needed removing. So both breasts had the same treatment ..well seems only fair..), letrazole for a month which I asked to stop ( side effects), and have been waiting 3 months for radiotherapy .Got my tattoo appointment through yesterday for 20th December so presume will start 15 consecutive days in January. I also have Chron’s and a small bowel stricture so been in hospital with that twice BUT there have been brilliant times along the way. I am not a sporty person but I have started sewing lessons with a local group. I have made bunting, bags, cushions, toddler shorts & waistcoat. I find I can’t think of worries when I’m trying to wrestle with a seam! My garden looks the best it has in years and we had a new path built which I walk around every morning - just taking it all in. A friend gave me her old Magimix and I have now perfected a range of biscuits for when friends come round and gossip! I travelled to Durham for a big family birthday - can’t explain how brilliant it was to see everyone. Anyway just wanted to say ( whilst I admire everyone who can achieve such great things like marathons) my happy almost post treatment life is full of little moments ..and new skills and time spent doing what I want. Maybe I now appreciate them a bit more.

[hollynicole]

Hi,

I was diagnosed in September 2022. I underwent a mastectomy, followed by IVF to store embryos since I was only 28 at the time. I received chemotherapy, radiotherapy, and additional genetic testing, and then had another mastectomy. Thankfully, I am currently cancer-free. I recently had a full body scan, which showed no issues, and we are now starting IVF to have our first child.

I want to emphasize that it does get easier with time. It’s important to plan things to look forward to. Although I had a really tough time during treatment, I made a conscious decision to try things I wouldn’t normally do. I participated in charity fashion shows, trekked across the Himalayas for charity as well, and attended pottery classes and shows. I realized that if I spent too much time worrying about my diagnosis, I would be wasting the life I have right now.

I have also written a book that might help others; it’s filled with positive stories and tips, including contributions from women who were diagnosed over 15 years ago. It truly is possible to move on and be okay again.

Beyond the diagnosis | postive breast cancer stories

[maymackie]

I was diagnosed with HER2 positive 8 years ago. I’m still here! Put your trust in your oncologist - they will be giving you the gold standard treatment. I do feel that surrendering to this difficult phase actually helped me. Interestingly enough when I told my oncologist in a follow up appointment, that I gave thanks to all my treatments and meds, she said that patients with my attitude faired well. Maybe she was being kind, but here I am. I’m on Tomoxifen still after the 5 years of Letrozole. I hope my story is a help. Best wishes.

[mrsjelly]

I’ve an image of you and your wonder horse jumping through the bureaucratic hoop!

[bettymay]

Zometa is indeed for helping with bone density, trying to counter the bone loss resulting from depleted oestrogen when taking letrozole et al. But, as a poster mentioned, it has also been identified as possibly having a marginal benefit in preventing bc recurrence. Every little helps [hopefully], as the advert goes!

[kitz85]

What a lovely story, can we please see a photo of your horse! I love horse ridding maybe I can get back into it! Xx

[kitz85]

Hello my name is Katie too! I was diagnosed October 2024 at the age of 39 and at the time my son was 3 years old.

My positive story is today I’ve had my yearly MRI & Mammogram which has come back clear! We are celebrating tonight with steak, chips & glass of red once my 4 year, soon to be 5 year old is in bed.

Surround yourself with positives because there are a lot of women who have positive outcomes. I had ‘had!’ triple negative breast cancer, resulting in a lot of chemo, a therapeutic mammoplasty surgery to preserve the breast which I just look at and cannot believe they were able to do that for me, and radiotherapy. But now I’m off all meds, my period has come back literally last week (taken 9 months) my hair regrowth is going well still doesn’t feel like me yet as all the new hair is wavy on top of the hair that was left after chemo as I opted for the cold cap. However I’ve worked the whole way through, had a promotion, built my team of artists from 3 to 9, I’m going to be getting back into running this week hopefully maybe next week, rebooking the lovely holiday we had planned & had to cancel in 2024. Honestly, I’ve got some tummy issues and anxiety because of the stomach issues but I’m enjoying life and I will enjoy this glass of wine! Xx

[william]

I have been wondering how to attach a picture. Here goes! I am very tall, and the horse is little, as you will see from my long legs. But he is well up to my weight, he is a strong little guy.

[william]

His name is Garrincha, he is named after a Brazilian footballer who was a buddy of Pele in the late 1960’s.

[kitz85]

He’s beautiful! Thank you for sharing, what a pretty little horse. If I wasn’t allergic I would have probably tried to get a little Shetland pony or a palomino. Cats seem to be enough for us because they are crazy.

[foxgem]

I am fully here for all this positivity. Thank you all. One day in the future I hope to post my own

[katie91]

Hi Katie! Lovely to hear from you and your positive story has really inspired me! I’m so glad to hear you’ve come through the other side and sound like you are absolutely thriving!! It’s nice to hear from somebody with a younger child too so I know all of this is do-able!! I’ve had a lumpectomy I’m just waiting on results now of if I need chemotherapy or not and then it will be radiotherapy and hormone blockers!

Great to hear you have worked too! I’m self employed so it’s not really an option for me not working how did you find the cold cap? Did you manage to keep much hair?

Absolutely fabulous news that it’s come back all clear!! Enjoy every mouthful of that steak it is so well deserved. Lots of love xx

[kitz85]

Hello Katie, the steak was great! Yes it is absolutely doable, with him being so young at the time we didn’t tell him, he just knew I was tired sometimes and other times I couldn’t play with him or take him swimming on my own because I had a lot of brain fog from the carbolplatin which is a heavy chemo drug, however it’s the carboplatin that killed the cancer cells. Now he’s older I would have sat him down and explained in layman’s terms what was happening.

The cold cap was fine for me, another lady gave me advice to drink hot tea as its going on & to have taken paracetamol. It only was uncomfortable on the last 2 rounds as I had patches by that point. I kept a 3rd of my hair but at least I knew it wouldn’t be noticeable for my boy that was my main reason.

I hope you get good results and minimal treatment! Xx

[katie91]

Thank you so much and I’m glad you enjoyed your steak. I got good results from surgery no spread to nodes and clear margins! So just the wait on next bit of treatment plan but whatever it is I’m ready to tackle it!

Mine at 2 and 5, they just think I had a poorly arm and didn’t know about surgery or anything. The BCN at diagnosis told me about some good books but I decided to just keep it quiet for now, I’ll see what happens next and how I get on with treatment etc.

That’s good to know you kept some hair, it seems to be hit and miss but I’m going to give it a whirl if I have to go down the chemo route I suppose there’s no harm in trying it even if it helps just with the re-growth!

Thank you again for your message, I’m sure you know from your own journey how lovely it is to read positive stories

[kitz85]

Let us know what the outcome is, as for the little ones I totally agree. They recommended books too but I felt as my prognosis was curable treatment, I didn’t want anything to imprint on his young mind. Good luck lovely, fingers are crossed for you!

[mssteel]

Love Dr. Liz! Very informative with a straightforward, no nonsense delivery.