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
- That is great news you are clear for mets. I was just as surprised when I got my results a few years ago. I thought for sure I would be riddled with it but no, just a bit of arthritis in my thumb and that was it!
Nowadays doctors like to keep all the images and reports to themselves in their computer systems and we dont often get to carry the dreaded envelope of results. If you want a copy at any time to keep for yourself, your GP doctor can access and print out that sort of thing. It did help me when a cyst showed up in my last mammogram. I asked the doctor was it in my original tests but she couldnt be bothered scrolling back that far. I had a copy at home and looked it up and yep the cyst was there at original diagnosis. - @Eastmum that's fantastic news your scans are clear !!!! Phew! I remember hearing those words and feeling such a sense of relief! I felt so fortunate - made me feel stronger mentally for chemo too I think. Much love. Bec xx
- You're absolutely right @DebP it's my nature to get as much info as possible but I haven't even had my first post-biopsy consult with my surgeon yet so I think I'll hang back now and just wait to find out all my options. Thank you! Xx
- @"Deb P" xxxxxxx
- I had an enlarged node on the left so it was biopsied pre op- positive so axillary clearance first surgery. The right sentinel node was biopsied with surgery- I went back for a second op to clear my right axilla and for further resection on the left as my margins weren't clear. I have 2 friends that have been diagnosed sine I have - they both had sentinel node biopsy during surgery.
If I can offer any advise its don't do too much research - you will come across things that will scare you senseless and might not be pertinent to your case. Breast cancer treatment has come along way. In a way we are lucky that so many resources have been plugged into research.
You are doing ok. Focus on one day at a time, one baby step at a time. xxx - Thanks so much @DebP for sharing your story - yes it seems that the ILC 'club' is a cosier one than some of the others. Did they diagnose your positive nodes pre-op? I'm a bit confused about the 'node' bit right now. I've read about some women who have had sentinal node biopsy prior to breast surgery and others who have the node biopsy during surgery - I guess these are questions I'll have for my surgeon next week.
Yes I will be absolutely much more on track when I have a treatment plan and I love the parting words from your oncologist. I know I have a difficult time ahead but I'll definitely get through it, especially with so much support :) - @primek - yes, 100%. The research has made an extraordinary difference over the last decades and continues to develop new treatments and methods of fighting cancer - not just Breast Cancer. It's a cause well worth supporting however possible.
- 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 xxx - 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.
- @Eastmum When I went to the surgeon after the CT scan, his first words to me were that the scan was clear - I burst into tears. So, I know where you're coming from. And yes, you do feel incredibly lucky.
