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Newbie in town!

Hello All,

I am new to this group. I was diagnosed with Oestrogen Receptor-Positive (ER+) breast cancer on 19th March and after a whole round of MRIs, CT scans, biopsies to three different parts of my body, and so on, I was told on 16th May that the disease had metastasised to a couple of spots on my spine. The first four doctors told me the disease was localised and could be cured, but the oncologist gave me the news that this was not the case, on 16th May. I am taking Letrazole, which has effectively put me through the menopause (I am 39) Zoladex injections once a month and a Zometa infusion once every three months.

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Hi

I had breast cancer when I was 40 and had zoladex injections..letrazole wasn’t around then..I’m now 64 with bone mets..on letrazole and Ibrance

Take comfort that you have only bone mets as they respond very well to treatment..my doctor likent the condition to a chronic one like diabetes

There are lots of treatments and I’m feeling fine on letrazole

Best wishes

Barb x

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Hi Barb,

Thank you for your message. It is reassuring to know that you have been doing well over the years and managing your disease. When my oncologist said I was "chronically ill" that scared me, as it sounded like she was telling me I did not have long left to live, but she also said that I have "many years" ahead of me.

I know a lot of women (friends and acquaintances) who have had breast cancer, but they have all been much older than me and they have all recovered. So I suppose you could say I have felt quite isolated in terms of being able to relate to others, and vice versa. I had another CT scan recently to see how things are going, and I am seeing my oncologist on Monday to get the results. I am hoping I am responding well to treatment.

All the best,

Sophie x

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Hi

I have my fingers crossed for your scan results to be good

I have a ct scan next week and like you I’m anxious about what will show up

I’m afraid life is going to be like this now for us..treatments scans worry etc but there’s no choice..just have to get on with it

I was diagnosed in April with the bone mets as I had a fractured vertebrae and was in pain so I’m just coming to terms with this and still mad as hell that I have this disease

There are lots of us in the same situation and you will find lots of help on this website

Barb x

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Hi Barb,

Thank you!

Let's hope your CT scan goes well next week. I know what you mean about being anxious about the results. I have had so many tests and procedures since all this began that I am now really familiar with the different departments of the hospital where I was born! I was also under gynaecology for a while, as one of the MRI tests showed that my right ovary was enlarged. I was worried in case it was ovarian cancer too. I had an internal examination and an endometrial biopsy, followed by a hysteroscopy on 18th June. My ovary was fine, but they also found a polyp and a couple of fibroids on my womb. Again, I thought it could be cancer. But the results from the hysteroscopy showed that it was benign. So I try not to worry too much, as it's not always as bad as you think it will be. My husband is a big help too. I hope you have support from family and friends.

It is hard to come to terms with this disease. I went through a "mourning phase" as I like to call it where I had to come to terms with the fact that I was not in perfect health anymore. I remember sitting in town one day and I was watching some elderly people going about their business. This is probably going to sound odd, but I envied them! I envied their longevity and got quite emotional.

I have never missed a cervical smear test, I eat healthily, get lots of exercise, have never smoked, I get a flu jab every year, I have been backwards and forwards to the doctor's a lot in recent years for any little ache, lump or bump, and every time I was told I was OK, apart from one time where I was diagnosed with a vitamin D deficiency. So I did not ignore my symptoms, I was right on it! I think the doctors might have thought I was a hypochondriac!

I am also getting my right hip investigated. When I saw my GP on Tuesday for my Zoladex injection she examined me and said the pain is probably not related to the disease. But I am going to get a referral to see a physiotherapist. Depending on what the oncologist says on Monday I may cancel that appointment. We'll see.

Sorry to ramble on! My name is Sophie, by the way, not Sal. But I didn't think my name would be available. I'll see if I can change it.

Take care,

Sophie x

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Hi Sophie

I’ve felt the same as you about envying people...mine was the other day..saw a really obese scruffy woman who obviously didn’t give a hoot how she looked and I thought..I wish I was you as you don’t have mbc!.. feeling sorry for me as I don’t think I deserve this..healthy lifestyle etc

No point though feeling this way but sometimes I can’t help it

Anyway we might end up old and decrepit..then we’ll moan about that!!..don’t mean to be flippant..it’s a horrible way for us to live with this

However I’ve just got off my horse and feel pleased with myself..I thought I’d never ride him again and horses are such a big part of my life..took lots of painkillers and just had a steady ride out..mentally it made me feel better

Love

B x

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Hi Barb!

I'm glad I'm not the only one envying other people. I try not to do it so much now, but when I saw those elderly people I thought "I want to make it to their age" and that made me well up. I also see people who lead an unhealthy lifestyle and wonder how they are still healthy, while people like us who have taken care of their health end up with this chronic illness! I was joking with my husband the other day that maybe I should have had fry ups all the time, and never exercised and then I may have been healthy!

Well done for going horse riding. I have ridden a bit in the past, but now I just admire horses while I am out dog walking (I run my own dog walking and pet sitting business).

Have a good weekend!

Sophie x

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Hi Barb, thank you for your story. I have had Mbc since feb 2018 and on ibrance and letrozole. You are an inspiration and thankfully you are doing well. I wish you continued success on this journey. You have really given all of us hope. How long have you had Mbc , since you have been 40?

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Hiya

I don’t feel an inspiration!!..my cancer came back after 24 years... I just assumed I was cured..I’m 64 now and full of hell its spoiling my life now..I reacted worse this time even though I’m older whereas when I was 40 and first diagnosed my children were 6 and 2 and I think I was more worried about them not having a mother

I have my crying days so if I feel rubbish I go out somewhere or see my horse..that’s therapy..just take loads of painkillers if I ride

So you and I are in the same situation..Ibrance and letrazole..I’ve only managed a few weeks on Ibrance due to wbc too low..had an iron infusion a few weeks ago to boost red cells as was anaemic and that perked me up a lot

Stay well

B xx

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I know I have theee kids and my little boy is only 15 and this is the worst card I have been dealt. Came out of knowwhere. But I will do whatever I can to stay around for my kids. They all need me for a very long time to come. Stay strong

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Hello I'm always new to this group. I was rd Nov 20, 2017 eleven days after my 39th birthday. I have bones mets only, I've had several bones radiated, I did ibrance. White blood cells went dwn, stayed in hospital for ten days. I have two young children at home. I have never been sick, work out, eat health. I went into ned April of this year. I feel great. My doctor says what your doctor said it's a chronic disease, I have many years ahead. I cry almost daily, l envy other people. I still have to take something to sleep. I take Steve and falsodex monthly. I have returned to work and that helps to keep my mind off of my dx. I just want to thank every woman for all of their encouraging words, it has also helped me thru some really tough times.

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I meant to say ageve not steve. My doctor also stated if I stay in remission for years I'm cured, he say remission not neds. I just want to take care of my children and watch them grow up. I never cry in front of them, some days i dont cry but this dx is always on my mind. Im a headstart teacher, so im pretty busy at work and home. Lol!!

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Keeping busy is great for taking your mind off your mbc

I wish I could work again..miss the company and the daily challenge..however I was planning on retiring anyway but not this way with mbc..it’s spoilt my life and I feel as if there’s nothing to look forward to..other days I perk up and if busy I can almost forget that I have this horrid disease so staying active and busy is the secret

B x

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Welcome Kduck!

You are doing so well by staying strong for your family and yourself. You are the first person I have come across with this disease who is my age. I have known women in their 50s and older, but no one else who is still in their 30s.

Maybe I should ask my oncologist about radiotherapy to my bones too. My back isn't too bad, but if I have had a busy workday it can play up a bit and feel weak. I am also hoping the pain in my hip is not related to the disease, but to my job. It has not shown up so far in MRI or CT scans, or even the whole body scan I had a few months ago, so I am guessing I pulled a muscle while out dog walking and it has not had a chance to heal.

I have days when I cry a lot too, but then I pick myself up and try to distract myself with helping others, or with my work. I focus on the positive. Each day is a gift and being able to work, foraging, going on day trips to the beach or the woods, enjoying time with my husband, other family members and my friends makes it all worthwhile. I don't have children, so in a way I am glad because if I did I know for a fact that this would be hard on them. My mum died from non-Hodgkin's Lympoma in 2004, and that was really hard.

Take care,

Sophie x

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What type of job do you have? Do you full time? Many people with bone mets work full time.

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I run my own pet sitting and dog walking business. x

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I want to thank you for your story. You have given all of us hope with being NED. Amazing , keep doing what you are doing. What meds are you on , did they take you off ibrance!

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I'm not on ibrance anymore. I take falsodex and ageve monthly. I did radiation, my doc said he thinks because I didn't have any health problems my treatments did very well. Like many women with children has stated I'm more worried and scared for them. I stayed prayed up. Dancing with NED is great but I still have fear.

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I know I am scared, I have children as well. So I plan to be around for a very long time. They keep me focused and I stay strong for them, but it really is hard to wake up and the first thing you think about is I have cancer and the last thing before bed is , I have cancer. Never did I imagine I would be here. Stay strong and hopefully we can all lean on each other.

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My children are my focus, my reason to get up every morning. I too never thought I would be here, but I try to stay busy. My youngest is 8, my oldest is 12. I have my good and bad days, on the bad days I shake it off and think of them. There are so many treatments out there, I'm going to live for a cure. My doc say I'm going to live for years, and whatever comes my way we will take care of it. We all have to be strong for each other. I'm glad I found this group, women know how I feel. I refuse to give up, I'm going to fight and try to live life to the fullest. I think about judy Perkins and one day every female and male with mbc is going to be judy.

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Welcome! You are in the right place for support, for asking questions and for connections to wonderful women. A place of sanity in our insane trip!

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Hello Mariootsi!

Thank you!

I feel so much better being able to share my experiences with other women who are going through the same as me. I have been hesitant up until this week to sign up to anything like this, but it has helped!

I know several other women who have had breast cancer, and they have been great, they really have. However, their situation is different, as they have all recovered. So I think some of them assume it will be the same with me, a year or so of treatment and then returning to "normal" again.

Take care,

Sophie x

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It is a difficult diagnosis to accept. I am still working on it. Still in shock! But with support and all the treatment options we are going to be alright! It is an emotional work in progress!

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Yes, it certainly is. I try to avoid the "what ifs" because thinking like that doesn't change the diagnosis. There are so many different treatment options available and that is encouraging. I am going to look at reflexology, as that's offered at my local Macmillan centre.

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Take advantage of anything and everything offered!

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I will! At first, I didn't want to, because I thought it wasn't something I had to have and what would the staff think if I asked for it. I know! It sounds a bit silly now, but I will ask when I stop by on Monday.

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Good! Don't be shy about things that will help you feel better and help you relax!

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Thank you. I suppose it is hard to justify complementary therapies when I am often told I look healthy and well. I am having hormone therapy, rather than chemotherapy, so I still have my hair. I have justified myself to people who have questioned my illness, when I know I shouldn't have to.

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You don't have to justify yourself to anyone!

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Yes, you're absolutely right. I think a lot of people still associate hair loss with cancer, so when you say you have cancer, but look the same as you did before your diagnosis, they start to question you! I am still working too and haven't taken any time off during my treatment. So some people think I don't have any side effects, when I do. I just don't always talk about it. But I feel I can here. x

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Hi SalSP!

Yes this diagnosis is hard to get used to. My doctor always lectures on the bad news...which doesn’t work well for me...Right now I’m doing well...I keep informed about taking the right supplements and essential oils...and I exercise a lot...have a couple 5ks lined up! I was afraid 😱 to do a lot at first because I was told I could break! But just like u I work with little kids that want picked up on occasion...! And they’re cute so I do! My best advice is to not change anything unless u need to...buy a Fitbit and track your exercise. You may end up healthier than u ever have and feeling great too...

Also Zoladex comes in 3 month shots. They won’t tell u..smh...but anyways u could ask for them to line it up with your Zometa infusion so u only have to go to the infusion room every 3 months...😀

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Hello Rhwright12,

My oncologist is a bit like that. My husband and I have seen her twice now, with the next appointment next Monday. He is not looking forward to seeing her again, as she is often so gloomy. It's my aim to try and make her smile next time we see her. I told my husband that to be fair, it can't be easy being an oncologist. I still remember when I had just started Zoladex. She asked if I had experienced any hot flushes yet (I was still having periods until the end of May) and I told her I hadn't. Then she said "You will" as if she wanted that to happen! Not long after that when I had started on Letrozole, I had a hot flush, and apart from about two or three night sweats I have been fine.

I have been having Zoladex (had four so far) once a month since May, but when I saw my GP for my last injection this Tuesday she mentioned the possibility of having it once every three months. So I shall ask the oncologist on Monday if that would be suitable for me. I would prefer that to going to the doctor's once a month.

Well done for signing up for the marathons! You must have a lot of stamina. I walk for hours each week, but I don't know if I could manage a marathon. That is great.

All the best,

Sophie x

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Hi thank you for your story. Are you estrogen positive? If so what supplements and essential oils are you using?

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Is the question aimed at me, Juliandrea?

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Yes sorry. It’s sophie right? :)

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Yes, I'm Sophie! I just wanted to be sure and not jump in! Yes, I am ER+. I was advised to take ADcal D3 twice a day, and I use Epsom Salts in my bath. I also use lavender, but I have run out. Are you in America, Juliandrea?

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Sophie, thank you for sharing. I am in Canada and this group is the best group I have come across anywhere. These ladies have kept me sane through all of this. Treatments are a little different for everyone it seems. I suppose depends on diagnosis. I haven’t been put on any bone meds which is strange as I have it in my bones. Will have to ask oncologist.

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You're welcome. I thought you were American from your spelling! Yes, I agree that treatments are different for each patient. I have not had any breast surgery, but I am hoping that once the tumour shrinks I can either have a lumpectomy or a mastectomy. When I mentioned it to my oncologist before she didn't seem keen on the idea. But I want it gone, even though I know I can't be cured. I would have thought you would be put on medication to help strengthen your bones to prevent fractures. I would definitely mention that to your oncologist. The Adcal D3 is a combination of calcium and vitamin D to strengthen the bones. I am not sure if if comes under a different name in Canada, and I take Zometa (Zoledronic Acid) once every three months as an infusion treatment to strengthen my bones.

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I know I found it odd as well. Will definitely ask him, thank you so much

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You're welcome! I hope all goes well with your oncologist.

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Hi to all you newbies. I feel like a veteran entering my 7th cycle of Ibrance and letrozole. The first 3 months were soooo hard! I find it has been getting easier to get to sleep. So much is swerling around in your brain, it's hard to shut down. Stay on the site, and take in all the positive energy out there coming your way.

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Thank you! I have had trouble sleeping. It was hard even before my diagnosis, so I don't think it's down to the recent heatwave. The last time I enjoyed a deep, peaceful night's sleep was on 18th June! I think that's because I had just had a hysteroscopy that day, so the anaesthetic was still in my system. I should have asked for a year's supply!

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Try Xanex !

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I'm going to talk to the oncologist. Maybe I just need to get some more lavender essential oil. I also plan to look into reflexology, so that might help.

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Thank you! I'll talk to the oncologist and see what she suggests. I don't really want to keep popping a pill for everything if I can find a natural way of dealing with it. But we shall see!

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