New diagnosis

Hi Nat43 and a very warm welcome to the online community

As I had a different type of cancer to you I can't help with your questions but I noticed that your post hadn't had any replies yet. This is probably because this is a very active group and posts can fall off the first page before someone with the right experience has seen them. Replying to you will 'bump' your post back to the top of the discussions list where it has more chance of being seen.

x

Aw thanks x

I've tagged Carolyn28 as if I recall she had different types of cancer .  Apologies if I'm wrong Carolyn x

Thanks for tagging.  I guess I won’t really know if its two different cancers until the have analysed it all properly following surgery.  It has fascinated me as to the varying sizes.  As a nurse I try to stick to clinical trusted sites, there was a clinical paper  I read that suggested  that anything in DCIS over 25mm can indicate it becoming invasive quicker. X

morning Nat43 cheers Grogg how's things?

not sure I'm going to be of any use but here goes

I had a large area of DCIS and when I looked up the stats it's obvious the larger the area the more likely they are to find something more sinister within it and for me they did. To be fair the original consultant whom I saw privately did kind of warn me but they can only tell you what they find and at that point they did only find DCIS. 

The meeting was a real head ***k, they were literally all smiles, I can see now, with the benefit of hindsight, that DCIS was a very good outcome for me but to be told "it's 'only' DCIS and you'll 'only' need a mastectomy" was mind warping. His parting shot was a gentle, be aware this is a large area of DCIS and they may well find something more sinister post surgery. Your team are being vigilant and that's good. 

Having said all that I do believe the nature of the biopsy disturbed things. You can't not have biopsies but everyone has acknowledged the risks, it's just the benefits outweigh them. I think of it as prodding a sleeping tiger. 

I'd also had the area of DCIS since 2012, another thing that made finding IC more likely, we could see it on the routine mammogram when it was up with the new one in 2015. So in actual fact I was very lucky indeed that it hadn't spread further in that three years. My private team were all gently prepping me. I was trying to keep my head in the sand.

I'd expected my results on the Friday and they made me wait until the Tuesday, that was the longest four days of my life and I googled everything. I had four pages of questions ready for the meeting and I'd expected to be told chemo straight away, probably even to be told it had spread. Despite my extensive searches I'd uncovered nothing about DCIS, it was a total surprise. 

Marsden Chelsea was totally different, I didn't have a great experience there.
I was told I was 'only' DCIS so I wasn't 'urgent'. I had to wait a month for surgery. Then the results weren't ready at the 2 week check up. Although she was able to tell me the sentinel lymph node was clear. 
At the three week check I was casually informed that there was indeed invasive cancer found within the area of DCIS.
Of an area around 60mmx40mm there were dots of invasive cancer but none were more than 2mm, which is why I suspected that this was recent, in fact during the month I was kept waiting I was gradually becoming more ill, nauseous and breathless and exhausted. I was told I was 'over anxious' ... no shit Sherlock. 

The Marsden is busy. Let's just put it down to overworked staff. It was actually just one nurse who seemed unusually flippant. And the short sighted surgeon who missed the other tumour that had popped up during the month long wait. A tumour or lesion that had been spotted by the private team but missed by the RMH imaging dept.
I guess I was his first go at breast surgery. His finishing was useless too, my reconstruction looked like a dog had chewed it. Thankfully another surgeon made a better job but it's still not great. I believe I can go back at some point and have a different type but I'm okay at the moment. 

I also had Paget's of the nipple which I'd been offered to 'save' but chosen to get rid of on a premonition.

So, all in all, DCIS, invasive Her2+++ and Paget's. Still not a 'full house' though.
Also worth comparing was the slow growing DCIS in the upper left quadrant left breast that expanded from about 10mmx10mm in 2012 to the 60mmx40mm in 2015 to the suspicions lesion in the inner upper quadrant left breast that popped up as a full 25mmx25mm tumour overnight. Clearly visible as I don't have a cleavage, I pointed it out to the surgeon, he then apparently cut neatly around it. 

As for the covid question, I have no idea and I suspect nobody will know that yet, it's too soon.

Perfectly healthy people still get cancer. Perfectly healthy women get hormonal related cancers.
Your risk will be greater, I suspect, during chemo, should you need it and at 43 I guess they may offer, as it will give you a better chance of long term cancer free survival. 

I was very anti chemo. To be honest I think there's too much pressure on women to have it and they try and give you a choice but it's really not a choice any of us are informed enough to be given. 

I was scared and a lot of people who I'd known who'd had chemo had died, I didn't want it. 

The consultant at the Marsden, Marina Parton, was very kind and patient and threatened to lock me in the room until I consented. Having had to go around as a new patient to find out what had happened to the 2nd tumour I was a very nervous patient. She had everyone show me everything and confirm it matched her prescriptions.
There was a lot of hand holding. 

The risks are 10% for ALL patients, ALL cancers. Breast is lower because we're more amenable, we follow instructions, we take our medications, check our temperature and we follow advice on SEPSIS, blood clots and other risk factors. 
I was told I'd get a 20% uplift in survival with chemo and Herceptin. So a risk of 3 to 4% was acceptable. 

https://breast.predict.nhs.uk/tool

have a go with that and see what you get then come back and tell me, please, I just had a go and presumed IC, hormone driven, age 43, you said and symptomatic, as you said.

for example, if survival rates are 96% and the chemo risk is 3% it may not be worth putting yourself through chemo.

The whole long covid and chemo will have to be a discussion with the team. 

How do you feel about chemo, are you a 'throw everything at it' type of person?

lots of love and hugs

Carolyn

xxxx

Thank you Carolyn and for sharing your story with me.  A similar thing happened with my sister in law who was told all along it was DCIS but after lumpectomy they found IC and she had double mastectomy and chemo.  I don’t have any other results as yet like HER result. Apart from knowing receptors to Progesterone and Oestrogen.  I will let you know what happens on Wed. Im under care of RMH sutton.  So far I have found them very thorough and consultant has been great.  Sounds like you have had a really hard time with it all.  I am prepared for them to say I need chemo, nursing children with cancer and being a chemo giver gives a great insight into what its like plus have had 3 family members ( all the grandparents) go through chemo in past 10 years.  Its horrible waiting all this time for answers.  My first appointment was 11th March so feels like the wait has been so long.  I expect if the second biopsy shows ‘DCIS again’ it will be a wait for surgery again.  He did say as its intermediate he would operate within 4-6 weeks ( making it start if May ish) will keep you posted. 
Nat xx

hi Nat43

I've heard good things about Sutton, and it's good that you're not totally freaked out by the prospect of chemo.

I suspect they want to make a good decision on lumpectomy versus mastectomy. 

Nightmare waiting around though. Are you continuing to work?

hugs

Carolyn

xx

I am off work at the moment.  I had worked on and off during the past year due to covid.  I had three months off due to long covid and the ongoing temperatures which all flared up again in September, so I was off sick from Nov - Jan.  I seem to get a week of temperatures prior to a period still and for some reason this is when the covid symptoms also come back.  

I have not been allowed the vaccine as yet due to the ongoing temps! which are up to 38.6 usually.  I have been referred to the long covid clinic again this time at St Georges hospital.  

Sadly, I think the water is a bit muddy now as to what is causing what, plus with this rare autoimmune disorder linked to progesterone, I have also asked the question to the consultant, is there a link between it also having receptors to progesterone, is that accelerating growth.  He is not sure really.  As I have this cough that also seems to flare up when I get temps, I would feel so much happier if they scanned my lungs,  my Grandfather had lung cancer, so that does worry me that they are missing something. 

Sorry that was a long winded way of telling you that I am not currently working.  My manager and team have been very supportive, plus as the BCN also suggested I am very vulnerable, especially being directly exposed to covid in my job, that I should take some time out, until treatment is over ( well at least the surgery part anyway).  The thought of not working was not thrilling me, that I would have more time to think about it all. However, I have felt exhausted, probably through not sleeping well these past 5 weeks, also long covid/ Br Cancer symptoms maybe, so apart from keeping the family runnning on a day to day basis, some times I need to sleep a little in the day.

Thanks for much for all the info you sent through.. I have completed the breast predict tool.  Its hard as some results are still unknown so based on what I put in it suggests no chemo.  I will complete it again after Wednesday, as I may know a little more then. 

Thanks again, hugs back, 

Nat xx

Hi just reading your messages I got recalled after a routine mammogram,  had biopsy and been  told have 2 areas of cancerous cells 6mm and 4mm. Spoke to a nurse on friday who said both are DCIS plus IC. No idea really what it all means.  Seeing my consultant tomorrow so hope to find out a lot more and what they have planned for me but I'm terrified! What if they area is in fact a lot bigger, ? If they want to give me MRI scan will have to knock me out first! I just want it cut out of me (but that also worries me too...)

Sorry I'm waffling.... nervous and stressed, should go to bed but won't sleep xxx

Hi Carolyn28.I'm good thanks, hope you are keeping well too.  I knew you'd give a fab answer as I remember your saga.  
Merlin1664. It's normal to be stressed at this stage .  Once you gave a treatment plan it gets easier xx