Forum Discussion
Could really use some inspiration from a positive experience
Hi amazing people - I'm new to this site and forum and so appreciative of all the information on here and the generosity of so many incredible people who have shared their stories.
I'm right at the beginning of things - just been diagnosed with invasive lobular carcinoma in both sides - ER/PR +ve, HER2 -ve - looks like I've probably had this for a year even though I've always had regular, comprehensive mammograms and ultrasounds. Very thorough investigations (2 mammograms, 2 ultrasonds + MRI) on large palpable mass and some architectural distortion 12 months ago still came up as nothing to worry about (suspected scar tissue from breast reduction 30 years ago) but further changes and architectural distortion got much worse over the year so off I went for repeat scans and this time it was obviously breast cancer. Lymph nodes look clear on ultrasound (no guarantees I know) and suspected low grade, stage 1 or 2 but again - won't know until they get in there.
Haven't even had a proper post-biopsy consult with my Breast Surgeon yet because he's away until the end of the month but I'm about to go for staging scans - CT on chest, abdo, pelvis and full bone scan - and these freak me out so much more than the Breast Cancer diagnosis - is that weird?
Are there any stats out there on how many people have metastasized breast cancer right from the start? Do things like osteo-arthritis, old fractures, other inflammations show up as suspected secondaries? LIke, can you get a 'false positive' for mets? Or does Breast Cancer mets look very unique on these scans?
Right now all I can think of is the persistent cough I've had for a few months, the niggling pain in my lower back, headache and knee pain! I'm also quite overweight so that must contribute to some of those aches and pains. I've prepared myself for anything they will tell me (if you can ever really be prepared) but I'm trying hard not to 'write the chapter before it's happened' - as a very wise friend recently told me.
I don't want to give myself any false hope and I know I have to be prepared that there's always a chance they'll find mets but I'm obsessing over it a bit too much and I would really find some inspiration and it would help to get through the next few days if anyone out there might have also had aches, pains, coughs etc and ended up with clear staging scans at the start ??
Thanks again to all the 'warriors' out there. I hope that one day when I'm on the flip side of all of this, then I can also be of help and inspiration to someone :)
Eastmum
I'm right at the beginning of things - just been diagnosed with invasive lobular carcinoma in both sides - ER/PR +ve, HER2 -ve - looks like I've probably had this for a year even though I've always had regular, comprehensive mammograms and ultrasounds. Very thorough investigations (2 mammograms, 2 ultrasonds + MRI) on large palpable mass and some architectural distortion 12 months ago still came up as nothing to worry about (suspected scar tissue from breast reduction 30 years ago) but further changes and architectural distortion got much worse over the year so off I went for repeat scans and this time it was obviously breast cancer. Lymph nodes look clear on ultrasound (no guarantees I know) and suspected low grade, stage 1 or 2 but again - won't know until they get in there.
Haven't even had a proper post-biopsy consult with my Breast Surgeon yet because he's away until the end of the month but I'm about to go for staging scans - CT on chest, abdo, pelvis and full bone scan - and these freak me out so much more than the Breast Cancer diagnosis - is that weird?
Are there any stats out there on how many people have metastasized breast cancer right from the start? Do things like osteo-arthritis, old fractures, other inflammations show up as suspected secondaries? LIke, can you get a 'false positive' for mets? Or does Breast Cancer mets look very unique on these scans?
Right now all I can think of is the persistent cough I've had for a few months, the niggling pain in my lower back, headache and knee pain! I'm also quite overweight so that must contribute to some of those aches and pains. I've prepared myself for anything they will tell me (if you can ever really be prepared) but I'm trying hard not to 'write the chapter before it's happened' - as a very wise friend recently told me.
I don't want to give myself any false hope and I know I have to be prepared that there's always a chance they'll find mets but I'm obsessing over it a bit too much and I would really find some inspiration and it would help to get through the next few days if anyone out there might have also had aches, pains, coughs etc and ended up with clear staging scans at the start ??
Thanks again to all the 'warriors' out there. I hope that one day when I'm on the flip side of all of this, then I can also be of help and inspiration to someone :)
Eastmum
56 Replies
- @Payne Thanks for that, Sue
I go to Port tomorrow for planning/mapping & again next week, then start my radiation treatment on Feb 28th.
I've seen the people at the Lodge & will be staying there during the week, going home on weekends. - Hi @arpie. I had my chemo and radiation at Port Macquarie 2017. They made a terrifying experience almost enjoyable.OK, maybe not enjoyable, but positive and supportive experience. Sue P
- Hi @Romla thank you sharing such an amazing and inspiring story! What a wonderful woman to have met.
@sister I just read your blog post - so sorry to hear about your traumatic day. Thank goodness your husband was there for you. Please let us know how you go on Thursday.
@arpie
Thanks for asking how I'm going. Still traipsing around to appointments and getting info. Had my first appt with the plastic surgeon today. Discussing immediate DIEP after double mastectomy but he won't do immediate if I need rads. Interestingly my breast surgeon told me he didn't think I would need rads but the plastic surgeon said he thought it at 70% chance it will be recommended to me. Now I'm wondering - if it is recommended, will I actually do it? Is there a choice? Ah well next step is back to the Breast surgeon, CT scan of blood vessels to see if they'll suit a DIEP then will need to make some decisions! - Hi @Eastmum I’d like to share a story that got me thinking and moving again when I was having a tough moment. Last year I attended a local breast cancer group meeting and I met a quietly spoken low key lady called Yvonne in her 70s. She had had breast cancer 20 years earlier. On a trip around Australia with her husband she discovered a lump in her breast in Mackay .She had it checked out and was cancer and needed a mastectomy . Her husband and daughter share a birthday and before leaving promised wherever they were they would fly back for her daughter’s 21st. The day of her mastectomy she drove her husband to the airport for the 21st then drove herself to hospital for surgery.She was only able to stay in hospital until the Friday as at that stage it was not open weekends. Surgery 20 years ago was probably more invasive than today and she had hers in a small country public hospital not a large city teaching hospital Come Friday afternoon she went back to the caravan park to her van where she stayed with some help from neighbors until her husband returned. She is a tiny little woman who gets up for a one hour walk every morning at 6 am regardless of the weather as she says there is nothing that interrupts her at that time and she lives in the Adelaide hills on steep land. She is still cancer free , has had many trips in Australia and overseas since . She is an inspiration to me for so many reasons not the least of which is her unassuming practical nature steadfastly enjoying life.
- Thanks, @arpie Glad to hear you've sorted out your appointment.
- Shame @Sister ..... Oh dear - What a shocking experience for you - thank GOD you had Dave there who obviously picked up on your discomfort and the unusual 'skin shape' of the liquid going into the wrong spot .... I hope your next effort is not so painful - and it all goes 'right'! Good Luck!
I hope you are feeling OK now - are you able to have a wine & bickies to 'settle down'? I hope so.
I chucked two wobblies myself today, too .... one medically induced - my referral was 'missing in action' from last Wed & still hadn't been received until lunchtime today (they reckon they sent it 4-5 times! I could see my 'start date' retreating with every day of delay ...) & one vehicle insurance induced (their phones were dead & they weren't replying to emails or web messages from Fri til this afternoon as my campervan was not not covered by insurance at all & I will be using it for a week from tomorrow!) .... Both are now pretty well sorted & I now hope to have my initial radiation appointment next Monday at Port Macquarie (tho waiting for confirmation in the next day or so!)
All the best - from your Breasties! ;)
- Thanks, @arpie - Friends have given me lots of positive feedback about it. (I've just put an update on there - disastrous day today)
- @Sister - that blog is brilliant! Well done you!
Sadly a uke friend has just been diagnosed with colon cancer - i just hope they have as good a forum as us 'Breasties' do! I've been able to give her a heap of info to hopefully make her journey a bit smoother re IPTASS & other tips gleaned from both my husband's cancer journey and now my own - including your idea for the blog - sending out one email to everyone with the website address & friends/family to check it out every week for updates - what a great idea.
@Giovanna_BCNA - many thanks for that info Giovanna ... I may go with the regular blog at this point in time ... tho not immediately as I have lots of things on over the next week. - Hi @arpie,
I have looked into setting up a blog within the online forum space as I understand you would like to be able to keep your friends updated regarding your progress.You can create a “New Discussion“ under your profile, copy the URL of the new discussion and email this to your friends each time there is an update.
Alternatively, you can send your friends a link to your profile and your friends can check back in each week or each month depending on how often you are planning to post an update. The online network is however a public space, if you would like for this conversation to be private then you can set your account to private but your friends would have to set up an account to see your discussions and participate.
Hoping this information helps, most happy to discuss further.
Regards Giovanna
- @Julesjourney Well done, Jules - congrats on Week 1 done & dusted and staying so strong!!
I'll look into that 'FB post ' as a lot of my contacts are on FB .... trying to contact everyone by FB or email is a real pain, eh? But still easier than individual letters, for sure!
I am still waiting to hear from the Radiology Dept at Port Macq. Hopefully I can get an appointment before the end of Feb so I can start soon after & be done with it. I have plans for April already that I don't want to miss! :neutral:
@Sister Thank you so much for that .... I will check your blog out! Well done you two for sorting that out! Anything that helps spread the word with the least amount of time/stress will definitely be a bonus (even tho i am not 'that' technically inclined! LOL
Take care ladies - all the best with your treatments & journey xx
Roberta
