New to group and waiting for chemo!

Thanks 'it is what it is' and 'Jacala' your comments have reassured me. Sorry I've not thanked you earlier, I've managed to pick up Covid from my pesky teenager. Feeling below par but it's good to hear positive stories. Hope you're okay hev999. Thanks again. X

Good luck to all of you starting chemo this week/month. Come over to the chemo board as lots of us on there, some people are nearly finished, some half way through and some yet to start.

We need all the support we can get because this is a real sh*tty thing we're all going through x

hi Bowlyb oh no covid as well! Guess we will all get it sooner or later. looking at the news today I think we are lucky in respect that they do seem to be prioritising our treatment as far as they can, I have so many friends whose treatments for other problems cancelled....as for me it was weird yesterday , the tumour was 3 cm rather than the 2cm they thought, it has Been graded  a 2 out of 1, 2, 3.....5 nodes out of 11 were positive, not sure I really understood why they don't examine all the ones they remove, any ideas anyone?  my surgeon said they don't really do staging any more....?  he was happy with op recovery even though he seemed to have a very quick look.  so,  he advised 5 months chemo then radiotherapy which seems to mirror most people's treatment plans...I have been called today by hosp to advise they have had cancellation and I can have CT scan Fri!  gulp,....I  guess that will then determine the type of chemo if it has spread x   hope you're feeling a little less knickers in a twist and  you shake off that pesky virus xxxx

Hi hev999, I'm glad you got through the appointment and you have the information to digest. I'm pleased your CT scan is very soon, did they say they would do a bone scan as well? Prepare for the feeling of peeing yourself in the CT scan it's the weirdest feeling, it's something to do with the liquid they put in your cannula. It's a quick scan, in and out in a jiffy! Arms have to go above your head so warm up at home beforehand.

Your results sound like mine although I'm a grade 3. They never mentioned staging to me and I didn't want to ask. I think it's a negative way of thinking about your cancer,I don't need any of that! 

My knickers are ironed out at the moment, no twists or creases! I hope you cope ok with the wait for results of your scan, the mind tends to misbehave when we have time to overthink things. Stay positive, we will be in the chemo chat group before we know it getting on with it!

Pesky virus is losing its strength luckily. Hopefully I'll be all clear before I get my next appointment. xxx

when are you starting chemo....no mention of bone scan...bit worried re lifting arms above head as operated one is still stiff and doesn't go all way over....surgeon said can take 3 months to swelling  and stiffness to go down.  yes I know about the weird liquid  stuff as I had it when my appendix decided to burst 3 years ago and I was in icu for a week!  don't do things by half. I have asked fora pathology report as I forgot to ask even what type I have, eg lobular or what...actually the whole appt felt rushed tbh.   have u got friends and family to support x  I am still on sick leave from work and a close knit circle of about 6 colleagues and of course my non work friends,  hubby, and son.  we def need shoring up. what they gonna do about your problem with anti sickness drugs...I'm now trying to find an acupuncture clinic for my chronic hot  flushes..so expensive!  keep me posted xx 

Hi hev999

In answer to your worry about lifting arm for CT scan! I had the same concern following surgery, as I couldn't raise my arm high enough! It wasn't a problem at all! I just kept kept my arm beside me (when laying down). As long as it was slightly away from the body and not touching, they said it would be fine - which is was! They still managed to get a clear image! Hope that puts your mind at ease!

thank you so much! I will def mention it on the day. gosh you learn something new every day , and I love the fact if you have a worry or question someone will know xxx

Oh yes I know that feeling- my first day back at work today after 7 months off and I still can’t believe I’ve been through all of this. Once you have that first chemo done you will just be thinking one down so one less to go. I cried on my way in to the unit for my first treatment but the nurse was so lovely and we had such a lovely chat and nothing hurt - I don’t know what I was expecting really- I took my music and sweets and a hot drink with me as I had the cold cap and that helped and then indulged myself with some magazines I don’t normally get time to read- there’s always a silver lining somewhere I think. Hope it all goes well next week- you can do this happy to Answer any questions and there are some great responses on the chemo thread as well xx

Ladies, Happy New Year! I can relate to all of what's been said on this thread. So glad I'm not alone. Let me share my story so far - you might want to grab a beverage:

I'm 54 and have a family history of oestrogen receptive cancer so have always had a healthy paranoia for any changes. 

I had a phyllodes tumour removed from below my nipple of my left breast in 2018 which went from nothing at the previous mammogram in late March to something the size of a cubed postage stamp just 3 months later. Incision from just  below my nipple to the bottom of my breast to remove it.  I'm a 38DD. I didn't require any post-op treatment then, only a 3, 6, 9 and 12 month mammogram following to make sure nothing returned (ouch).

Fast forward 2 years and I had my biannual mammogram in April 2021 which was all clear. Towelling myself dry after a shower one Sunday night early September and noticed a small dimple above my right nipple. Straight onto the phone to my GP surgery next morning, had a phone appointment that afternoon and because of family history, referred straight to Highland breast centre. Had an appointment letter 3 days later for an appointment the following week. Went in, physical examination done (I've always had really lumpy breasts) and consulting surgeon didn't feel anything unusual, but said so that I can sleep soundly, sent me for a mammogram to confirm. Waiting in the lounge after mammogram to be asked 10 minutes later to come through for an ultrasound 'to get a clearer picture '. Oh hell, they found 'something'. Into the sonographer's room and lots of clicks of mouse buttons and tapping of keyboard keys. Cheery demeanour of assisting nurse started to change noticeably to concern and care.

Back out to the lounge to wait for consultant's nurse to call me back in. Another 10 minutes and my name was called. Consultant met me at the door to his room asking if I was on my own today and I answered no, hubby's just out at reception lounge. He turned to his nurse and said you'd better bring him through. My heart sank.

I'm now the age my Mum was when 21 years ago, she had a diagnosis but back then, meant full mastectomy of the breast. I really didn't want to follow in my Mum's footsteps on this issue. I have a 12yo son (he turned 13 in November) and I want to see him grow up.

Hubby arrives to the consultant's room, and consultant gets him a chair, strongly recommending he sits down. He proceeds: we have found a cancer, but we don't know what kind it is yet. Until we know what we're dealing with, we don't know how to proceed which is why I'm sending you back to the sonographer now for core punch biopsies. We'll know next week what we're dealing with after the lab can identify it. See you next Thursday (all couched in more caring gentler words and tone than I've recalled here).

Feeling rather battered and bruised from biopsies (9 core samples taken), head home. No sleep for either of us for the following week, and how do we tell our son who never met his Grannie because of this disease? She passed away 18 months before he was born.  We somehow managed, and a few tears shed, but tried to stay positive.

Next week's appointment 30th September (28th September was our 30th Wedding Anniversary) and he calls for us both to come through again.  You have an invasive ductal carcinoma.  The good news is it's extremely common and we're looking at a curative approach. Bad news is surgery will be at least 4 weeks away due to theatre closures because of Covid and staffing levels because of isolations. Normally have 3 theatres operating, currently only have 1 for breast surgery. We'll start you on Tamoxifen to halt oestrogen production. (I've been doing menopause without HRT anyway because of family history), but the Tamoxifen will intensify symptoms as it slows/eliminates oestrogen production fairly quickly. (Oh... yay!)  The surgery will be a lumpectomy and sentinel lymph node removal. Once healed, you'll undergo 5 days of radiotherapy and that's it, done!

Two weeks go by and receive letter with date for surgery  - 2nd November. Yay!

Pre-op assessment completed a few days later, PCR test done on the Saturday, radioactive injection and images taken on the Monday, the 1st, and early admission on the 2nd,

Day surgery done, (I was 3rd on the list) after going down to breast clinic for surgery guide wire insertion - back up to the ward and wait.  Following visits from surgeon, anaesthetist, and nurse checking vitals and going through pre-op questions, escorted to theatre about 11:30 a.m., woke up in post-op care about 1:45 p.m. Wheeled back to the ward. Tea and toast offered and gratefully received. 

Surgeon visits, all is well, surgery went well, removed 4 lymph nodes as they were the ones 'lit up' by the blue dye, go home, rest, see you back at the clinic with results in two weeks. 

'Sloshy' sound from breast by Friday so went in to see BC nurse. Turns out I have seroma. 80ml aspirated, all okay. Following Monday,  a further 80-90ml aspirated. All seemed fine after that  - hard to tell due to numbness - could faintly feel pressure building. Continued with another couple of visits to BC nurse that week for seroma aspirations. Having aspirated on the Monday, on the Wednesday night before my appointment with the surgeon, sat down to dinner and oh dear, whole pj top front soaked. Off to A&E for cleanup and new dressings, as we didn't have replacements on hand. The dam wall broke. 

Back to Breast Centre Thursday morning to be told good news is we got the tumour out which had increased to 30mm in size (from 18mm at ultrasound, and a secondary 12mm one was behind it so got it out too with clean tissue around them both. Bad news is all 4 lymph nodes had cancer cells, which means chemo and 2nd surgery for auxiliary removal  - to remove the rest. This surgery will require an overnight stay as a drain will go in and we’ll need to monitor before discharging you. We'll book you for a CT Scan to see if the cancer has gone elsewhere, again just so we know what we're dealing with. 

30th November surgery, 1st December, drained well and back home again. 3rd December back to Raigmore for CT Scan. Like you Haversham,  because surgery was so fresh, they were fine with me keeping my right arm down by my side. Visit to BC nurse after to check seroma. 180ml aspirated (a new PB!), but fluid pink instead of yellowish colour. Suspect mild infection, though no temperature, just hot feeling down right side of my face since 2nd surgery, so put on antibiotics as a precaution. Fluid sent to lab for testing. 5 day antibiotics extended a further 7 days. 

16th December back to surgeon for result of 2nd surgery and CT Scan. The remaining lymph nodes amounted to 10, and of those, only 1 had cancer cells. 

Good news is CT shows us all of your soft tissue and organs are clear, though question over some fuzzies showing up in several places on your lumbar spine. I had surgery on 5 vertebrae for scoliosis when I was 12, so could be scarring on the bone from that? Could be, but to be certain, we'll send you for a bone scan, and that, ladies, is where my story pauses so far. That's where I was today, back at the nuclear medicine department for a full body bone scan. Still healing from 2nd surgery and await the results of the bone scan,  hopefully in a couple of weeks. Not sure when chemo will start. It'll very much depend on how soon I can heal.

Does anyone else experience Darth Vader and Luke Skywalker duelling with light sabres from their outer chest / under arm to their bicep? That's what it feels like to me as the nerves start to reconnect.

Looking forward to hearing further from you all. Take care of yourselves .

Wow what a whirlwind you've been through. Totally sympathise with the atmosphere changing in the room during the ultrasound- I felt that too. 

Hope you get your chemo treatment date through soon.