Living with cancer
posted by Cathyhyn
17 February 2020

Metastic breast cancer

Last reply: 17 days ago

I was diagnosed with cancer for the third time at Christmas . Am totally traumatised . Have had radiotherapy and am now on bone strengthening treatment every four weeks . Am very tired is this normal:

30 comments

Comments

commented by grasshopper
18 February 2020

1 month ago

Hi there cathyhyn, I too was diagnosed with secondary breast cancer in my bones, also had a hip replacement, I'm currently on chemotherapy drug, hormone injections, and Bone strengthener... I'm devastated, I've a young family, and I'm not coping very well ... I recently had breast cancer 18 years ago, and had been having annual mammograms, but unfortunately this wasn't picked up until last August... Hope to hear from somebody who is going through something similar, as Its hard to maintain a day to day life.

commented by Polly Pockets
18 February 2020

1 month ago

Hi Folks
Is there anywhere to talk to other stage four women? I have recently been diagnosed with stage 4 BC metastasised to the liver on first go. It’s been a fairly dramatic couple of weeks. I’d really like to talk to other ladies who are further down the track. I have been to groups in the past two weeks but everyone had stage 2 or 3.
But I seem to be the only one there with stage 4 and I don’t want pit from anyone. Do this happen anyone else here?

commented by Tea4two
20 February 2020

1 month ago

Hi polly I’ve replied down below have a read I have stage 4 as well liver pelvis spine nodes in my chest

commented by Cathyhyn
19 February 2020

1 month ago

Hi there your story is very similar to
Mine . I had breast cancer 19 years ago then in 2013 spread to my lungs had chemo. Then at Christmas it in my pelvic region . Had radiotherapy and now bone strengthening drug. Am doing ok have good days and bad days. I have done counselling and it helped

commented by grasshopper
19 February 2020

1 month ago

Hi Polly, sorry to hear of your diagnosis, I can't really help as I am only recently diagnosed .
Cathyhyn, yes we are very similar, I am finding it so hard to deal with it, I've 2 young kids and it's breaking me thinking i won't be around to see them the next few years . .I've tried counseling in my local support centre but didn't find it any use . .I'm googling survival rates of this type of cancer and results are showing 5years which totally unnerves me . .I'm really in a bad way and hardly able to function without crying . . .how do u cope?

commented by Cathyhyn
19 February 2020

1 month ago

By trying to stay positive. My oncologist told me that there are more good outcomes than bad ones and not to focus on the negative so that what I try to do. Although I have my bad days too .

commented by grasshopper
19 February 2020

1 month ago

My oncologist said the same, positivity is the only way you'll get through this, but just can't shake this fear of death and my kids. . Thanks for reply

commented by Tea4two
20 February 2020

1 month ago

Hi all and Polly Pocket I have stage 4 cancer 18 months after breast cancer it returned in my liver pelvis spine and nodes in my chest OMG I was devastated couldn’t cope I was suicidal a wreck Felt so lonely no one to talk to I really didn’t want to upset my family I did tell them it was back Roll on 6 months later I’m doing really good I was put on calcium hormone treatment and Imbrance 1st and bone infusions every 28 month my tumour markers halved fifth month they reduced again scan showed the tumours have shrunk I’m still a mess some days but most days I’m really good I’ve no side effects from the treatment I’ve actually put on weight everyone says I never look as well I would love to talk to you because it’s a lonely place when you know nobody going through the same I don’t either that’s the worst I went to cancer support once there was a few at the meeting most were cancer survivors I was a mess didn’t go back

commented by Tea4two
20 February 2020

1 month ago

OMG oncologist telling ye to be positive how on earth can we be positive getting that news if mine said that to me I would probably slap him haha I found my head was in a mess couldn’t think straight or stop crying I was devastated still am but it has eased a little I’m still not my happy self I don’t leave the house much I find people we know avoid me in shops I understand they don’t know what to say to be honest I can’t talk about it or I start crying it’s hard ladies now it’s blood test every month scans every 3 months but thankfully all is good for now I’m tolerating the meds there doing what there supposed to I’m happy with that There is treatment nowadays girls if one dsnt work there is another to try I hope this helps as I know what ye are going through

commented by Tea4two
21 February 2020

1 month ago

Grasshopper and cathyhyn I wasn’t given radiation or chemo this time with the mets I wonder why just put on the targeted treatment I wonder why maybe it’s back in to many places How are doing on the treatment is it Imbrance ye are on I live in the west don’t know anyone on this treatment

commented by grasshopper
22 February 2020

1 month ago

Yes tea4two, ibrance, bone strengthener, and hormone injections . . I only had a week of radiotherapy, each individual is obviously tailored to different therapies, I was worries that I only got a week of radiotherapy, but they insisted that's all I needed. . I'm so drained mentally and so afraid for the future, it's the not knowing how long treatment will work for, it breaks me to look at my young kids, knowing ill only have a few years with them . .

commented by Tea4two
22 February 2020

1 month ago

Ohh gosh I totally understand your fear my youngest is 32 just had her 1st baby they are all married but I can understand your worries it’s a nightmare I don’t think anyone knows how long the treatment will work for I have seen some on it for 6 yrs I hope that gives you hope it gives me some The oncologist said it works for years and by they there will be a new treatment out fingers crossed I know grasshopper it’s so hard to stay positive and stop crying I honestly think I’m all cried out at this stage I am going to take the full strength cannabis oil when the treatment stops working not with the treatment tho I would be afraid it would interact with it I’ve researched it and seen some very positive results from it look it up something to keep in mind I’m so so sad for you with young children it’s the worst nightmare for any Parent I can imagine what your going through but probably 10 worst than I imagine How old are they I’m actually crying typing this to you I just want to hug you it’s just so unfair I will say when your getting good blood and scan results you will find it eases the fear and nightmareIt is still there but you will feel a bit more positive I do 6 months on Gosh I hope this helps a little bit

commented by grasshopper
22 February 2020

1 month ago

I just read an article from the US and with all the advancements in medicine, one can live 10yrs with different concoctions of treatments. God, you just grasp onto any bit of positivity, . MY kids are both under 9yrs, but I'm an older mum anyway, but the thoughts of not being here for them is unbearable . .my husband seems to think I'm not going anywhere for quite a few years.

commented by Tea4two
22 February 2020

1 month ago

Aww their very young that’s heartbreaking Gosh that’s so cruel my husband is the same he thinks this will work forever but we will be okay they are developing new drugs all the time Have you any side effects from the treatment I havnt except being tired and my hair thinning I can cope with that the 1st month on the treatment my tumour markers halfed 5th month they reduced again did yours Even if they stay stable that’s really good There are so many people around this area with cancer so many young mums it’s frightening and heartbreaking My friend died in October she was 25 yrs fighting cancer in different places it seems to keep popping up but she was great until the last year when the treatments finally stopped working She always said she was so thankful to get all the years and see her children grow her youngest was in her final year in college when she passed so treatments do work for a long time Grasshopper let’s hope they work for us

commented by grasshopper
22 February 2020

1 month ago

Sorry to hear about your friend, if I have 25 years I'd be happy ...my dad passed away 2 yrs ago prostate cancer, but fought for 18yrs from diagnosis, and that's what my husband says to me, that I need to think and fight like dad did. ...yes, fatigue and hair thinning, bit can cope with that...they haven't said anything about my tumor markings, going nxt week for injections so I'm going to ask....let's hope we get through this. .

commented by Tea4two
23 February 2020

1 month ago

Aww I’m so sorry you lost your Dad and that’s still painful for you 2yrs is not long when you loose a parent I go to my GP for bloods every month and injection the breast care nurse is so not nice she’s so cold and is always off I keep away from her but when she phones with the blood results I ask her I get a printout in the surgery my daughter in law is a nurse she double checks them The hospital is a 60 mile round trip for me I got a medical card I only had to pay for the prescription the 1st two months phew and bloods €50 each time now it’s only €20 Do you only get a monthly prescription it’s so annoying she faxes it to the chemist Our poor husbands it’s as stressful for them Ask the nurse everything she has to tell you I hope you got a medical card

commented by grasshopper
23 February 2020

1 month ago

I go to the hospital for bloods and get the injections same day, yes, monthly. Applied for medical card but was refused, even with letter from oncology, I haven't appealed it as I heard it's very hard to get one.

commented by Tea4two
23 February 2020

1 month ago

I was refused as well appealed and got it once your on the treatment you will get it You are entitled to it I know wealthy people who got it on appeal

commented by grasshopper
23 February 2020

1 month ago

What did you send in when you appealed it? It would make a big difference if I could get it.. feeling terrible today, just being with my kids, knowing whats ahead breaks me...

commented by Tea4two
25 February 2020

1 month ago

Hi Grasshopper I rang the medical card office got talking to a lovely lad I just explained that I was on the treatment He said to apply again get my GP to put Terminal cancer Palliative care on it The nurse manager did and I faxed it of they rang the surgery after a few days they messaged me my number to use within a week while waiting for the card to be posted Everyone with secondary breast cancer gets it for definite I did not need a letter from oncology My children are all married we have no mortgage or loans my husband is working I wasn’t going to apply for one but the nurse in the surgery told me to said her husband got it he’s on Immune therapy for cancer she’s working full time and have a huge farm Make sure your GP specificities what I said above It’s actually disgraceful we have to re apply we are going through enough

commented by Cancer Nurse
24 February 2020

1 month ago

Thank you all for sharing your stories and experiences.   A metastatic breast cancer diagnosis can have a huge impact physically, emotionally and financially and it is so important to have support to help cope and manage with this diagnosis.  The Living Life programme is an information and peer-support programme for people who have recently been diagnosed with metastatic (advanced) cancer. The programme offers information, support and the opportunity to meet with other people who are living in a similar situation, I have attached a link with information below.  This programme is available through local cancer support groups.  We also have a peer to peer service where we can put you in touch with another lady living with metastatic breast cancer, this can be accessed through our Nurseline on 1800200700 or by one of our nurses in the Daffodil centres.

 

https://www.cancer.ie/cancer-information-and-support/cancer-support/find-support/living-life-programme

 

Kind Regards

commented by Tea4two
25 February 2020

1 month ago

Thank you I find I’m so emotional and lonely don’t want to upset my husband or children sharing my worries and emotions it’s the worst place too be nightmare that never ends

commented by grasshopper
25 February 2020

1 month ago

Thanks tea 4two for that information, I'm going to get my GP or oncology to write that on the form, it's a disgrace, you got lucky talking to somebody nice in the medical card section, I have been on to them a few times and a few times they weren't very helpful... I really don't hold out much hope for getting it listening to the radio the other day, a man who is in a similar position to us, terminal, was refused.. although the words 'terminal and palliative care' really scare me.
Sorry you are feeling so lonely and emotional
I too feel the same about having no one to talk to, don't want to upset my husband..
I find myself searching for positive stories on the internet, just to give me a bit of hope..

commented by Tea4two
25 February 2020

1 month ago

Grass hopper that man got the medical card he was saying we shouldn’t have to keep reapplying and should not be means tested I think that’s what he was applying maybe I took it up wrong Like you when I was 1st diagnosed 2yrs ago I didn’t get it OMG when I phoned twice I got the most ignorant staff I didn’t bother bother appealing it I couldn’t believe the lad I got this time he was a gentleman It’s the luck of the draw I think weather you get it I started crying when I asked my GP was it stage 4 terminal My oncologist dsnt say much I find that across the board in the public hospital I went to the Galway clinic for second opinion I have no faith in hospitals I went for my scan this morn drove around for 20 min along with loads more looking for parking aggg I ended up leaving my car on a mucky grass spot at the very back of the car park an attendant said you can’t park there I just said well arrest me I need my scan haha it was raining heavy had to walk over in that and pay €3 for the privilege it’s deplorable HSE and Government should be ashamed In private hospitals they give cancer patients free parking and have multi storey car parks beside the hospital Sorry I’m ranting but it’s so upsetting seeing older people trying to get parking and then a long walk uphill to the hospital in bad weather I have no choice but to drive myself my family and my husband can’t afford to take days off to drive me as most can’t nowadays I’m moaning today I hate hospitals haha scan anxiety it’s a constant worry I was thinking of you when I was trying to sleep last night and again this morn it’s so unfair I’d better stop rambling on How are you today

commented by grasshopper
25 February 2020

1 month ago

Sorry tea4two you had such a terrible morning at the hospital, you certainly don't need that added stress on top of the stress of the scan. Hope the scan was ok.
I woke up quite positive, thinking, it's not in my main organs, then doubt crept in, and I'm back to my teary, worst case scenario, I've only months to live .etc ...my kids are so young, that hits me the most...the man I was talking about - think it was on Joe Duffy, don't think he got his medical card . It was when I heard him, I said I don't stand a chance, even if I appeal. But I'll see if I can get letter. Thanks for thinking about me, I go to bed thinking too, and it's so hard to sleep.

commented by Tea4two
26 February 2020

1 month ago

Ohh I only caught the end of the it I 4got to write down the Facebook page he had i never hear the full program I do know what you mean the mind plays tricks with us no matter how positive we are trying to be I totally understand with two young children it’s so hard and quiet normal to worry so much it’s heartbreaking If it’s only in the bone in your pelvis that’s really good honestly I know people who are still alive and really healthy 20 yrs on I have it in my Liver, Nodes in my chest,Spine,and Pelvis I can’t believe got my scan results this eve and I’m over the moon Spine and pelvis are stable She said the cancer in my liver was barley visible on the scan and chest had reduced significantly I’m in shock over the moon I’m on the 6th month of treatment I really feel that will give you some reassurance that the treatment does work A lot of the information on the sites are out of date and don’t factor in our treatment seemingly there are people on it for years and it’s still working How long are you on the treatment Grasshopper

commented by grasshopper
28 February 2020

28 days ago

That's great news tea4two, you must have been delighted.. I'm on my treatment now 6 months, was in this morning for my injections.. I'll have another CT scan in 6 months time, have an MRI next week to check spine and vertebrae. Fingers crossed.. I won't get results until march for that... Some days I'm good and very positive, other days I'm so down and depressed. Gosh if I had 20 years I'd be so happy . .lol .

commented by Tea4two
05 March 2020

22 days ago

How are doing grasshopper are you a coping any better waiting is the worse it’s awfull won’t help you at all
Are your CT scans every 6 months mine are every 3 months I don’t get any MRI I always worry am I getting all done I need as I have no confidence in the hospitals I’m terrified of the Coronavirus now I’m staying indoors as much as I can only imitate family allowed in haha I’m probably being way over cautious but best be safe than sorry 😐 are you taking precautions I made my own hand sanitizer today if I have to go out

commented by grasshopper
10 March 2020

17 days ago

Hi tea4two,
I'm doing ok, good days, bad days, more bad than good if I'm being honest. Every 6 months for CT, had MRI for spine etc last week so will get results in a few weeks. I'm a bit concerned now about Corona, so not going out much, just bringing kids to where they need to be, but taking precautions. I'm fairly down in the dumps today, have not slept much last few nights, Everytime I go to close my eyes, death, my husband, kids, family are in my vision, and I cry most nights . It's horrendous ..
How are you keeping?

commented by Tea4two
10 March 2020

17 days ago

Aww gosh I’m heartbroken for you I was like that the 1st couple of months and I was having panic attacks I’m much better now How was your scan results Grasshopper I know there’s no point in giving you advice because it goes over your head it’s just so overwhelming for you I wish I could tell you something that would make you feel better My Husband said to me one evening your still alive and not sick or house bound can enjoy your little grandson maybe we should make the most of a bad thing it did sink in to try enjoy life while I can but look I know your in a completely different frame of mind with 2 young children 👶🏻 it’s so much harder it’s so cruel I keep thinking about you I’m staying indoors now I’m terrified of corona virus we are so vulnerable better be safe Wear gloves and a scarf if you have to go out you can pull the scarf up around your face if needed Aww I wish I could help you Will you ring the nurse on here please I’m sure they can direct you better You need counciling even over the phone a chat with someone

© Irish Cancer Society 1999-2020 All Rights Reserved