Could really use some inspiration from a positive experience
Comments
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Hi again,
I so get the waiting game you are playing. It really is.not nice. I suffer from back pain and every other pain and prior to a scan it plays with my mind terribly. Mine have shown just my arthritis which is good. My Dr told me if it’s cancer it glows like a Christmas tree and looks quite different. My first ever scan I opened it and looked and saw what I thought was lots of glowing bits and nearly died. There was no report with it and I panicked, turns out that was nothing! I hope you don’t have t wait too long for yours. As you have said, it is what it is.
All the best and huge hugs.
Paula x1 -
Hi Eastmum...So sorry you are here.
I was diagnosed in April 2015 with ILC in my right breast. I like you, had mammograms and checks yearly, and even had one done 9 months earlier and nothing had shown up, so it was a shock when I was diagnosed with what they thought was a 1.8cm mass. Originally they thought it was on both sides with me too, but it turned out only to be on the right side only, (biopsy confirmed this). I had a lumpectomy and a sentinel node biopsy where they found small amounts in two lymph nodes and that the tumour was actually 2.8cm. I was then advised to have chemo and radiation. I am now on Letrozole which is an aromatase inhibitor which stops oestrogen from forming in my body as my cancer and in fact most ILC is oestrogen and progesterone positive, mostly stage 2, and mostly HER2 negative. I have only heard of a very few people who are HER 2 positive.
I can't remember if I had a cough or aches and pains before my scans. Probably I did, but I do remember feeling fear and shock about it all and as a result every thing starts to "feel" wrong... and I stopped trusting my body, but so far all my aches and pains, (I get really bad sciatica since diagnosis and back aches), have shown up on MRI's as bugling discs or pulled muscles. At one stage I had trouble filling my lungs and it turned out to be simply anxiety. So far so good !
I too had all the body scans, after my diagnosis. Arthritis and all sorts of things show up on the scan, but are not mistaken for cancer. ILC is a slow growing cancer, well usually —— its just a bugger to see as its sheets of cells all spread out. I think I probably had been growing it for about 7 years, but it took that long to really show on an ultrasound. I have yearly MRI's now, (which are not covered by medicare or health insurance), along with mammograms and ultrasound as thats the best way to really see it clearly.
I tried to take it one test at a time. Get through one, get the results, don't think too far ahead.
Please feel free to contact me at any time if you need to ask more questions.
Love and hugs.2 -
Hi @mum2jj
I already told my Dr that I'm going to wait for the results - or go back to get them - and I'm going to open the envelope myself! There better be a report! LOL - i do believe that it's the unknown that is so scary, like so many others have said. I think that once you know what you're dealing with, you can start making plans to deal with it! Thanks for the encouragement and the good wishes. x1 -
Hi @Dany1
Thanks so much for sharing your story. I'm sure I must have had this in my body for a while too - and I've been taking the contraceptive pill for years as well! I only just stopped a few months ago - so I'm sure that hasn't had a good impact on the ER+ receptors!
I'm really at such an early stage with all of this - I haven't even had my post-biopsy consultation with my breast surgeon yet, as he's been away, so I don't know yet completely what I'm dealing with.
I really believe that once I have all the info, I will be a lot less anxious because for me, the unknown is the scariest bit.
I did get blood test results back today from my GP though and they were really good. I know that I shouldn't paint the world 'pink' just yet, and that cancer markers are a very inefficient and unreliable diagnostic tool, BUT they did come back low and in the normal range - so I am going to take a smidgen of comfort from that. Also, all my liver function bloods came back normal so my GP said she would be extremely surprised if the cancer has spread to my liver. I know I won't know for sure until the scans - but again, another grain of comfort will certainly make me calmer for the tests.
Thanks so much for reaching out and offering your support. xx
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Hi there love looks like you’ve had a heap of great advice. Here’s my go to comments that I like to give to everyone
So I’m giving you a big virtual hug and I’m standing at the top of the shit covered mountain that you will slowly crawl to the top of with champagne in one hand vodka in the other and when you’re finished everything you can run up there in the nude (or your zena warrior princess costume whichever you prefer) and show me the most magnificent and biggest set of Hairy balls that you have had to grow (they will be so big they will hang out the bottom of your skirt of your costume if you are wearing it) to get through all this and be proud that you have slapped your breast cancer in the fucking face and sent it screaming down the shit covered mountain you’ve just climbed and let it lie there to die in its own filth where it belongs.
Hang in there love it will get better. Margie xx
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Hi @Eastmum, Welcome!! I found a lump in my left breast Feb 2016. Due for my period so I waited until about a week after to check again as they say you should. Couldn't find the lump - all good! April I was on my treadmill doing what I like to refer to as a jog - Bwahahaha) and my left breast was sore. Checked it and felt quite a large lump. Breast screen did mammogram. Called back. Another mammogram, ultrasound, 2 core biopsies, 4 fine needles and was told yes there was a 2cm lump that was going to have to come out. One week later had to go back for results, yes tumor, yes early BC. The surgeon who gave me the results was so good I ended up being referred to her for my surgery. I was told I would definitely need chemo as it was an aggressive tumor and possibly radiation. I decided to have a mastectomy with immediate recon using silicon implant and surgeon said even if I needed radiotherapy that could be done. She suggested skin and nipple sparing mastectomy due to position of tumor. Had surgery all fantastic. Recon looks fantastic so very lucky and very happy. My tumor ended up being grade 1 stage 2 slow growing and there was also a lesion but that was benign (doesn't matter as that's gone now too!!) Upshot was no nodes involved (they had looked abnormal and 4 were taken)so no chemo, no radiation Er+, PR+ , Her2-. Am currently on Tamoxifen and will be changed over to aromatase inhibitor in july. This is to stop any cells from feeding on the hormones. I have been incredibly lucky but was prepared for whatever I had to go through. My wig that I had ready I gave to a friend who had to have chemo so at least it was useful. Huge hug to you lovely. Hope your appointments go beautifully and your news is the best that it can be. Xx Cath
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Hi @Eastmum, and first off, big hugs to you it's such a scary and difficult time but as someone who was also diagnosed with invasive lobular cancer (I had 2 of those buggers that successfully hid away until one got so big it pulled in my nipple) back in 2012. Both of the lobular tumours were strongly ER/PR + and I had a small but aggressive invasive ductal tumour that was HER2+.
I was probably where you are now with the worry of things having spread and was absolutely petrified before my first CT scan as although I knew I had inflammation from osteo-arthritis in my knees / back etc this suddenly became, in my mind, something much worse. Your friend is so right and very wise, not to write the chapter before it's happened, although I know that jumping to worse stage scenarios is a particular talent of mine!
To cut a very long story short, after a year or more of intensive treatment and a further year doing reconstruction and now on Tamoxifen for a few more years yet, I'm still here almost 6 years on from diagnosis and so far (fingers crossed) all looks good. I still panic a bit when new pains / niggles happen but also know I've done everything I can to do to try and not go down this path again and I guess that's all any of us can do.
Best wishes, Jane xx6 -
@onemargie what awesome post! I love that attitude - you rock!
@socoda thanks for sharing your story. It sounds like it's all going really well for you and I hope it continues in such a positive way.
@Jane221 your words of inspiration are very welcome - thank you so much
Well today at least I did have good news. All my CT and bone scans came up CLEAR for mets. Yay! Lots of osteo-arthritis, a cyst here or there and age-related stuff but definitely good news and I'm very relieved for now. One step at a time! Thanks again so much everyone. I know I have a long, difficult, road ahead but I'm much more positive about it all now. And I will beat this! Xxx8 -
I know exactly what you mean. I remember saying to my plastic surgeon once that I was lucky that my breast cancer was...... he looked at me and said, did you just say you were lucky? I just remember the feeling of relief after scan results is amazing. However none of us are lucky, it’s a bitch of a disease, fortunately if caught early enough it is treatable.
Much love to you.
Paula xxx1 -
Yes. The clear scans give us hope and makes us think of our sisters that haven't had the same outcome. Lets keep the research going for those women and men so this disease can be fought successfully, clear scans or not.7
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Hi Eastmum
So sorry that you are on this mad rollercoaster. Last Feb I was diagnosed with ILC in both breasts - I don't think that there are too many of us around. Mine too was difficult to diagnose- negative mammograms and ultrasounds despite physical changes. Eventually a biopsy was ordered and confirmed malignancy - ER/PR +ve and HER2 +ve. The tumour in my left breast was 10.8cm- I had 9 positive nodes. Smaller on the right with 2 positive nodes. All my bone scams and CT scans were normal so no spread- Yeah!!!! I had a bilateral mastectomy and bilateral axillary clearance followed by 6 months of chemo and 5 weeks of radiation. I am on herceptin until June. The final words that my Oncologist said to me on our first meeting were- "leave this office knowing that this is treatable and curable".
I can't say that the chemo was easy nor the radium but you do get through it- you don't have a choice. Try to not let your thoughts go crazy - easier said than done - I know. This is the hardest time- the uncertainty, the waiting. Once you know exactly what you are dealing with and have a treatment plan it gets easier. Remember a thought is just a thought- so if you are fixating on something - ask yourself- is this real or is it just a thought?
11 months on I am preparing to return to work,starting to resemble my old self. I am even considering reconstruction surgery. It is shit at the moment but you have a lot of living ahead of you. Be kind to yourself. Deb xxx9
