Thanks for that encouraging post Helen. I'm just off for my first review ct scan today and I've had backache for two days now after no twinges for three months. Trying hard not to let my mind go into overdrive but boy it's difficult. Be glad when this week is over. Hugs to everyone Debbie xx
Hi new ladies and welcome. Don't be hard on yourselves, at the beginning it's terrifying for everyone and you think the worst. It's a roller coaster ride from day to day, week to week as you are trying to learn so much about the cancer secondaries and treatments, side effects etc and your mind is a mess.
Infact I think many of us are in shock for months and swing into very negative places in our heads. We consider the horrible things and think we need to prepare to die.. Well I did at least. However over time things calm down, I promise. You start to understand what's going on, which helps you feel you have some control. You realise there are many treatment options and potentially much more time than you fear and hopefully start to work out how to make the most of this wonderful time we have on his planet and not focus on the cancer. Sorry... I'm irritating positive! But I was dx in Jan with secondaries and it wasn't until March/ April that I came out of my mad frightened state and started to feel in control.
Many of that post on here a lot are further ahead than you. Post away negatives, we're here to help you be calm, provide some positives and like you said, help you to realise you're not alone. That's why this forum works :-))))
be kind on yourselves 🙂
Hi Tiger. And. Skippy
How are you both? Have you been able to set up your private messaging. Yet. I have just received my. First. Private message. So think it seems to take a little while for our accounts to become active. I will keep trying to. Send you both one. Much love Debbie xx
Tiger, just tried to message you but your message system hasnt been enabled yet.
try leaving a message on one of LizzyBCC's threads about it...I think they wait to see if we are genuine
eg, not avertisers or other businesses, before they enable pm
was saying to someone only today, that one of the difficult things about this illness is...it sneaks up on us often unawares. Sometimes its hard to find or diagnose. Thats why its so scary, it takes away our confidence in our health status.
so when we get symptoms, its so logical to think well it could be/ must be the cancer.....I am a fairly long cancer survivor..my initial diagnosis was in 2001. it was missed in 2000!, When I went along, like Stresshead did , with a dip in my breast. Lobular b cancer doesnt show up on mammos. I had a poorish prognosis then ,but in fact Chemo, followed by Letrozole gave me 11 treatment free years before the mets were diagnosed to liver and bone.
I still get tormented by anxious thoughts when symptoms occur, but I do have my own strategy for trying to deal with them...if im very worried, I get seen by the gp or onc asap. If a symptom comes and goes, then im less worried....as cancer symptoms seem more often to persist, but I always mention them at my appointments with my onc regardless, if only to share a light moment with him! I also chat to the bcc helpline, or my n/spec and I really use this forum too.
I have also discovered that some pains are positional, so I check if it goes away if I move. I have discovered sciatica comes when im stressed, ( so easy to imagine its met pain) I make good use of my chiro!
i hope this helps a little
love and hugs
Oh, and Tiger, please dont feel you cant post because things seem to be negative, weve all, been there and it does help us, to think we might be able to help others, by sharing our experience. we may often seem optimistic, but weve all had black moments, honestly. Please dont hold back.
love and hugsxx
Hi Debbie, Thanks for your message. I hope you've not been too troubled by the headache today. I don't know if it's significant but I always had shocking headaches that coincided with my period and would last a few days. I always took co-codamol and sometimes they worked but other times it was just a question of riding it out and it went when it wanted to. I was always told to be careful with the co-codamol though because if you take it all the time it's supposed to cause headaches too. Hopefully things will settle down for you once your body gets used to the meds. And if you can decorate your kitchen after a diagnosis of SBC then I'm in absolute awe of you. Sounds like you have a lovely hubby who knows that you just need a good cry every now and then. It's such a massive diagnosis, I have the same moments when the enormity of it just hits you and takes your breath away. My partner is being so supportive too and I forget sometimes that it's such a strain on him. It's a bit cliche but he is my rock right now. He doesn't always want to talk about it and my negativity really tests him sometimes but he's there for hugs and nose wiping whenever words can't help! I'm just back from the MR scan. I wasn't looking forward to it as I had one twenty years ago when I hurt my back and it was so claustrophobic but this time was okay thanks to a handily-placed mirror that let me look out of the end of the tunnel. Whichever bright spark came up with that gets a massive thanks from me because it made all the difference. Now I just have to wait for the results and try to keep the negative thoughts away for another week. Sending lots of love and positivity to you and Skippy and all the other brave ladies. I can't see a private message yet but I'll keep checking. Love Tiger xxx
Hi Tiger, Skippy and all
Good to hear from you. I tried to send private messages too but seems that I can't seem to send them to various people. Not sure why?
Well I'm now a few weeks into taking the Tamoxifen and have just had my second Zoladex injection. For the first two weeks I felt good. Week three and wham I reckon the oestrogen level crashed dramatically (which obviously is the aim of the game) but I then started with horrible tension type headaches. My neck felt very tense too. BCN said to take ibuprofen and paracetamol but sometimes they just don't get rid of it. Had this now for just over a week and it's not much fun. Reading up the side effects of Tamoxifen and Zoladex are headaches and lots of people seem to suffer from them. A couple of nights ago I had a bit of a meltdown, couldn't stand the thought of constantly suffering from these. Had a good cry into hubby's shoulder. Next morning I woke up and thought "great no headache". Still decided to go to Tescos and buy up some co-codamol (don't want to take it but thought I'd better have something stronger in the cupboard). Spent the whole day decorating the kitchen and felt good. No painkillers taken. That's it I thought, it's gone. This morning, woken up again after having lots of night sweats (been having those regularly but can live with them), headache again. Same place, back of head, feels like tension. It's difficult not to panic. Going to work this morning so hoping the walk up to the office will help.
Tiger I know what you mean about trying to believe it's only bone mets. I got told back in early May that mine was only bone mets (albeit extensive) but I do worry continuously about what if it spreads to soft tissue. Hubby does a great job in bolstering me up and most of the time I am OK but then the mood swings can occur and the dark thoughts try and get in. It's very hard to get them to go sometimes. Usually a good cry and I can then get on again.
Tiger I will try and send you a private message to see if it works now.
Take care and keep that grrrrr going. Debbie xx
Hi Skippy, If you don't mind a misery guts tagging along too I'd love to keep in touch. Believe me, my couple of weeks reading through this forum has taught me that we aren't alone. Love to you, keep strong xxx
Hi daisy Jane (and all!), I was hoping I'd find a recent post from you. You were so kind to message me a few weeks ago to let me know that you were a newbie too and share your story. I tried to work out how to send you a private message but I don't think I have that privilege yet!! I hope everything is going well for you (and for all). I'll update everyone with my progress (which seems so slow but probably isn't): I'm having a top to toe MRI scan tomorrow then I should be back to see the consultant on the 30th for the results of that and the bone biopsy I had a fortnight ago and hopefully I'll get a treatment plan, which consultant said was like to be chemo then bone strengtheners. I'd been given tamoxifen and seemed to have a flare up of pain for the first two or three weeks but this seems to have settled down now (still some flushes though, which I can manage because I know that means they are doing the job of reducing my oestrogen levels) Hurray for an early menopause!😞 Unfortunately the hoarse voice has continued and I've now developed some irritation in my chest which makes me cough. I'm not breathless but there just seems to be some tightness there (like I'd imagine asthma would feel like).I'm trying to convince myself this doesn't mean lung mets and might be a tamoxifen side effect (the CT scan I had early May was clear for soft tissue- 'just' bone mets) but I'm not doing a great job of believing that. I'm still going to work and acting as though nothing is wrong there but the morning wake-up time and evenings at home are so tough, trying not to fear the worst and what is to come, and just trying to keep going for my family's sake and for my own sanity. I've an appointment next week with a psychologist who specialises in oncology-I'm trying everything that's being offered to me- but she's going to have her work cut out convincing me that there are ways of keeping yourself sane whilst having this condition.My partner has been so supportive but I'm leaving him to watch the footie in peace most evenings so it's a lonely and scary time when it's just you and your thoughts.How I wish I could be one of you optimistic ladies. I guess it's time to pull my socks up and live for the moment, but just now there's still a lot of worry and woe in me. So sorry everyone; this has turned into a miserable post so feel free to give me a virtual slap across the legs for my negativity😭. I hope everyone is doing well and if not, that things soon start to improve for you. I'm still looking through everyone's posts but I'm not posting much because I think it would be all too negative right now and not helpful to any of you lovely ladies. Daisy Jane -would love to keep in touch as it seems that our stories might be quite similar so far and boy, do I need a dose of your positivity! Lots of love to everyone. Tiger (Grrrh!!! Hear me roar -Ha! As If!) xxx
Hi daisy jane, Skippy and all...
Just read last thread and although not the same i do share a few things in common.
I was 47 when i was diagnosed with Gr3 lobular cancer in 2011...never had a mammogram as at the time the limit was still 50. Like you no symptoms till i looked down one day to see a huge dent in my right breast. Long story short i had everything going to try and prevent any recurrence inc double mastectomy,diep reconstrction, axillary clearance, chemo and radiotherapy.
I should also mention that i had no family history but 2 weeks after me my mum was diagnosed. (we laost her to metastatic disease last august) and then within a year, my sister. Despite this we are told there is not enough evidence to warrant genetic testing.
I went on to hormone therapy and all was well for 2 and half years til i developed a lump on my sterum which for 5 monthe i was told was a sebaceous cyst and left unchecked and undiagnosed. It was actually breast cancer which had spread to my skin. Inow also have it in pleura and bones.
Hormone treatments are no good now because my ER + changed to TN, something i wasnt told about for months after the biopsy.
I can sympathise/empathise and know exactly how you feel. I post mainly on skin mets and sometimes on bone mets. xx
I thought I'd share my story with you so perhaps we can share our experiences together. I am 48 years old, married with two beautiful children aged 16 and 10. I went along for my first ever mammogram in April 2016. As they had brought the age range down for routine mammograms from 50-70 to 47 to 73 I fell into the net. Was a little apprehensive but then isn't everyone but thought all would be fine. Waited two weeks for the results then got the recall letter to attend the breast clinic the next day. Went along and they did further mammograms but only on the right breast. They then did ultrasound and at that point I started to panic as the radiographer took a long time. She then said she wanted to do TWO biopsies. After waiting the longest week ever I went back and got told that there was Grade 2 lobular invasive cancer in two places. I was stunned. I hadn't had any symptoms but as they told me this type doesn't cause a lump, it creeps like a vine. They did a further biopsy to check lymph nodes and a PET CT scan. Another week round and I got told that it had spread not only to lymph nodes but to my spine. The shock was unbelievable as I am sure you can imagine. I then got referred to the oncologist who told me I had years not months but they wanted to do a full body bone scan. When the oncologist saw the report she then told me that the bone mets were extensive. I refuse to believe this. Apart from the usual aches and pains that all 48 year olds get occasionally I haven't had any symptoms again. I don't know if I am still in denial but I refuse to give in to what I refer to as a condition not a disease.
Well the treatment plan they have put me on is hormone therapy as my cancer is oestrogen positive but Her2 negative. I am currently on Zoladex implant injection (just had second one yesterday), Ibandronic acid (bisophosphonate to strengthen bones) one tablet first thing in the morning then have to sit for one hour upright! (Bit of a faff but manageable) and then one Tamoxifen tablet. For the first two weeks I was also prescribed some steroids which put me on a complete high. I felt brilliant, ready to take on the world which was bizarre. Week 3 it all changed, the oestrogen obviously crashed and I started to get a daily headache plus I feel really achy. Doctor told me I could take paracetamol and ibuprofen which I do if absolutely necessary. I am also going to start taking glucosamine later today (when Tescos delivers them!). It's so surreal as I've gone from someone who never took any medication to now popping pills with regularity.
I still can't believe it's happening sometimes. I didn't tick any of the risk factors for breast cancer - no family history, don't drink, never smoked, breast fed two children, not overweight, ate well (most of the time), etc, etc. I've been told it was just bad luck but to get hit with the double whammy of primary and secondary together was something I never even contemplated. But this is the path I've been given and I guess I have to get on with it. Going back to see Oncologist in August with CT scan beforehand. I am praying that these drugs are doing something and stopping it feeding.
I hope this helps you a bit in knowing that you are not alone out there. It seems there are so many of us being diagnosed with this b,,,,,,,,y thing at younger and younger ages. Please keep in contact as it will help me to regularly talk to someone else going through this. Big hugs to you. Debbie
Hi I got the double whammy of breast cancer and bone mets all at once only a month ago and I know how alone and scared you feel right now. If you'd like to chat I'd be very happy to help if I can. Big hug to you x