Likely breast cancer after ultrasound

[spartanrunnergirl]

Hi all after routine mammogram I was referred for an ultrasound, which I had today and the radiologist said it's likely a cancer, thus did a few core biopsies. I did not know that cancer could be detected at ultrasound stage but she was pretty certain it was cancer and said the biopsies were to see what they were dealing with. Has anyone else had this? Thank you

@AlwaysALargeSauvignonBlanc that's frustrating! But it also sounds likely to be good news, or at worst something just beginning that can be safely dealt with. You might well be the Poster Girl for getting a lump checked and finding it was nothing sinister- I do hope so. But for now, I'm sorry you are back on the wait. Hope it's not for long.

@Fillybuster it's easing a bit, thank you, trying to stretch it as much as I can and been swimming etc. Just waiting for a referral for someone to fix the cording now. Hope you are feeling prepared for the new job! X

Hi everyone. I've typed this update on my phone twice over the past couple of days,
only to swipe in some random way and lose it! Third time lucky - but I can't remember what I said each time so here goes 😂

@chococakey what a trial you are having. Sorry that it’s delayed again and I hope you are feeling better and able to get on with stuff whilst waiting for next Monday. Great news about the Braca gene!!

@Fillybuster good luck with the new job. Radio side effects are so weird and unexpected. I never had any advice about baths or deodorant. I was told not to go to a sauna .. after I told the radiographers that my exciting weekend plan was to go to a beautiful lakeside sauna with my mates. So, I ignored that and went anyway! @quietmaelstrom hope your effects are settling too. I still wear a crop top under my sports bra as my boob hurts randomly, and it’s still bigger post radio, than the ‘good’ one even though I’ve had a chunk of flesh chopped out.

@StartupRepair so interesting about your dream and the trauma … Our minds have interesting ways of working to protect us when we need it. My GP told me in January to just take care as the aftermath of the cancer treatment can pop up in unexpected ways over the next few months and she was right. I am doing really well back in the real world with cancer behind me, but I am terribly anxious about recurrence. Not helped by my very logical friends all saying don’t worry that’s highly unlikely. I know that! It doesn’t stop the worry … I have signed up for the Breast Cancer Now moving forward course in April so hoping that might help me. Time I suppose will also help. Tamoxifen is going ok for me too. My sleep has got better now I’ve cut out caffeine after about 4pm.

@dancingwhilstfacingthemusic – baths have never felt so good I bet. Are you starting radio now? also @batshitcraztwoman are you in the run up to radio?

@AlwaysALargeSauvignonBlanc some promising sounding news but more tests … you need our ghost train analogy … chugging along, low level worry ticking over, then SURPRISE !! the next crazy/good/bad thing pops out just to keep it interesting! Seriously though, the waiting and wondering is the pits and you have my sympathy.

Likewise @PreVerbalGerbil I hope you get some more results soon to move forward x

I hope everyone is doing OK. It's beautifully sunny here and I’m off to walk my dog x

@AlwaysALargeSauvignonBlanc sorry there is more waiting and wondering. There is an awful lot of that with this bloomin illness. Hoping for good news for you.

@spartanrunnergirl I am spared the joys of radio, which is a relief. I had wondered, as they didn’t quite get a big enough margin on one of the sides of my tumour. They tell me that as I had a mastectomy this rules out radio.

Hope everyone is getting a boost from the sunshine. I have looked out the factor 50 facecream as I understand the steroids make me more susceptible to burning.

One of these days I will get the hang of individual replies, and remembering who is who!
For now I hope everyone is having a good week, positive vibes for those who need them, and calm steady week vibes for everyone else!

Had consultant appointment and have a date for lumpectomy so that feels like step one happening. CT scan came back clear, had MRI but it hadn’t been reported on when I had my appointment. Herceptin was ‘borderline’ so treatment plan pending lumpectomy results. Who knows at this point!
Feel a bit like the ghost train is running at a slightly slower pace, but bracing myself for the next jump scare!

Glad you now feel like your starting out on the treatment plan @PreVerbalGerbil, though I'm sorry the results are still not coming in as they should. Good news that the CT was clear 😊

Wishing you all the best for the lumpectomy - lots of experience on this thread to draw on!

Finished my radiotherapy yesterday - all went very smoothly except on Thursday when the machine in my room went down so the staff were working hard to slot us in to other rooms to get our treatment. Only minor side effects so far but have been warned they will worsen over the next couple of weeks.

Hi everyone just checking in. Hope everyone is ok.
I had a blood test yesterday and my white cells are back up so plan is to go ahead with round 2 of EC on Monday.
For anyone who’s used the cold cap - what happened with hair shedding? I’m now day 20 post first chemo and my hair is coming out in huge clumps. It’s actually quite distressing. I cut my hair to my shoulders before starting chemo (it was so long right down past my boobs before!) I don’t know if the cold cap hasn’t worked or this is just what to expect. I knew hair would be lost and shed but wasn’t quite expecting huge clumps coming out. My hair is very thick so I’m not sure if that’s why the shedding seems so huge.

Otherwise I’m feeling ok going into round 2. Just want to get it done after last weeks delay.

@quietmaelstrom pleased to hear you’ve finished radio. What a great milestone to hit. I’ve got 20 sessions to get through once I’m through my chemo so good to hear your experience and tips.

@PreVerbalGerbil you are at the worst part of the journey. Once I’d had my lumpectomy and a clear plan ahead I felt more in control. Pleased to hear the ct was clear.

@ everyone else I’m not sure why I can’t tag but I hope your all ok x

Hi @chococakey I had a big shed 3 weeks after my first EC. The lint roller was my friend. I found the paxman scalp cooling group on Facebook and apparently the big 21 day shed is a thing. Mine did settle down although I wondered if I would have any hair left. I’ve thinned on the top and sides but can manage with my own hair and a tonne of hairspray for a comb over of the thinner patches.

Glad that you’re cleared for round two. Another step on the way.

@PreVerbalGerbil glad you’ve a date for your lumpectomy. Things can move very fast at times or unutterably slowly.

@quietmaelstrom yay for finished radiotherapy. Hope the side effects are manageable.

@dancingwhilstfacingthemusicThank you. I know what you mean about the lint roller! I’m finding hair everywhere and I’m trying to use a wide tooth comb regularly to comb through as advised but I can’t touch my head without what seems like huge clumps coming out. I knew it would thin out, I guess I wasn’t expecting it so dramatically coming out. I’m trying to keep it in a very loose ponytail at the nape of my neck in a loose scrunchie. If it’s just down then it feels like it gets more tangled.
Hoping it settles down and it has worked. X

@quietmaelstrom so glad the radiotherapy is over.. @chococakey hope all goes well with the next treatment. @PreVerbalGerbil this bit is hard - hope there are no more jump scares.
I'm (touch wood) going ok. I see a lymphoedema physio regularly and the poor woman herself is suddenly off to have a dmx. This disease really is bloody everywhere.

Morning all, how is everyone?

EC chemo #2 went ahead yesterday. Finally! So another ticked off the list. Feeling dreadful this morning though. Groggy, sicky, fatigue setting in. I suppose at least this time I know after about 5 days I’ll start the feel a bit more ‘normal’. Last time I thought I was going to feel that way all the time through this.
I used the cold cap again and wow it was so painful. Last time I didn’t think it was that bad. Shows how much hair has come out. I estimate probably 30% of my hair has gone since my first session. It’s looking awful. Very thin in the back and lank at the ends. It’s cut to a length between my chin and shoulders. It used to be right down my back! Definitly struggling with it. Nurse at the unit told me to try and carry on cold capping but I’m not convinced the hair is staying in any meaningful way and is very stressful and upsetting seeing it all falling out in chunks and all over my house. Have to see how it goes.
I’ve got 2 more EC before moving onto 4xPaclitaxel.

@quietmaelstrom glad your radiotherapy is done! I was quite lucky, apart from one patch of skin breaking I didn't have too many bad side effects from the radio. Fingers crossed it isn't too bad for you !

@PreVerbalGerbil sorry you've joined the club. The first bits of waiting I found the worst. Hang in there!

@chococakey 2 down, you are a quarter of the way through the infusions! I didn't find cycle 2 quite as bad, but mostly I think that was in my head, cos I knew what was coming. I had the same treatment pattern as you by the sounds of it. I gave up on the cold cap after session 1, so you've already got me beat there! Maybe see how painful it is at the next one? I found losing my hair to be more traumatic than losing a breast tbh, I had to shave it off myself because I couldn't watch it fall out. I remember one day breaking down at my mum's house and leaving her to deal with all the hair in the shower, I just couldn't look at it. Felt much better for me once I'd shaved it and it's growing back really nicely now.

Hope everyone is ok! It's a year more or less since I started chemo, and I'm enjoying doing things I couldn't do this time last year x

@chococakeySorry this is so tough for you. I personally would try and stick with the cooling cap. Paclitaxel is much gentler. I had four cycles of that with zero side effects and after an initial shed of hair, it slowed right down. It’s such a personal thing though and the decision has to be made on how it makes you feel

@chococakey 2 down. I hope the next few days are as kind as possible and then lift. From what I’ve heard from others, those who have EC first and are able to continue with cold capping can get regrowth through paclitaxel. Are you able to keep warm under enough layers otherwise? I had a t shirt, thick cardi, poncho and a blanket for my cold capping, although I was also using frozen gloves/ socks. The time I forgot my cardi I found it much harder to get through the session.

Also, from what I reach on the paxman Facebook group, 2-3 weeks (typically day 21) a “big shed” happens and then slows down. It’s bloody horrid to go through this hair loss as well as all the other stuff we are going through.

I’ve had some better news this morning. I was too scared to check my remaining breast until the end of chemo and found a lump a couple of weeks ago. I left it and checked again at the weekend and it was still there. Although I know it’s unlikely to be something sinister after 16 rounds of chemo, understandably I was very anxious. I phoned my breast nurse yesterday and they had me in this morning to be checked. Fortunately, it was just a fatty lump but the whole experience has raked up so many difficult feelings. I had my breast examined and the nurse cross checked with the mammogram from last May. She was extremely kind and very capable.

@dancingwhilstfacingthemusicReally pleased to hear your scare came back clear. This definitely brings a whole new level of fear. Right now every ache and twinge I get I keep convincing myself is it spreading - even though I’m going through chemo and told it’s highly unlikely. Your mind can’t help but go there. The anxiety is through the roof. X

@TheFormidableMrsC@SunnyValemin
I had been warned of the 21 day shed and also how EC is the worst for hair. My hair was very very thick. I think if it was already thin it would have all gone by now. It’s really coming out and is very distressing. I’m trying to persevere. Big concern for me is to try and look as normal as possible for my little boy as well as myself. Going through this takes so much from you and trying to hold onto a little bit of yourself if you can is important. Although I also concede that keeping a decent amount of hair is very unlikely now. I’ve got a wig ready for back up.

good to hear sunny that a year on your starting to get back into enjoying things again and moving forward. So good to hear from people out the other side of this. X

@chococakey sorry to hear you’re having a tough day. Really hope things start to settle over next few days.

Had my surgery yesterday and at home now recovering. They did wide local excision and sentinel node biopsy and bilateral mammaplasty reconstruction. All seemed to go well in op. Had some sickness after which I always get post anaesthetic but they’ve sent me home with plenty of anti emetics thankfully and strong pain relief.
Go back for wound check next week, got to work out in the time being how to have a wash without getting the dressing wet !!
Should be having post op appointment with surgeon in 3 weeks when they’ll know if I do need chemo as well as the radiotherapy. At first appointment the results weren’t back for HER2 but has since come back positive for that alongside oestrogen and progesterone positive which is why they say I may need chemo as well. Has anyone else been positive for all 3 and what treatment did you have?

Yes me! I had the same op as you but no reconstruction. Clear nodes. I had the five day intensive radiotherapy and 4 cycles of Paclitaxel chemo plus 1 year of Herceptin injections. To be fair it was a pretty manageable journey albeit during the initial months of pandemic lockdown. I hope you recover well from surgery. Don’t forget to do those exercises, they are really important.

As for washing, I washed my hair over the bath and then ran a shallow bath and sat in that to wash. I put a hand towel over my shoulder to
cover my boob and avoid splats. It worked fine. I have a violent shower so avoided that until I was allowed 🙃

Smiling at the 'violent shower'- are you sure it's not just misunderstood?

@TheFormidableMrsC thank you thats good to know. Think they did mention herceptin alongside the chemo so will ask at the post op appointment. They’ve said either way I will definitely be having radiotherapy.
I’ve got the physio sheet for the exercises and will make sure I do them.
Just managed to wash my hair or rather my DH washed it for me whilst I sat on a stool under the shower whilst wearing a poncho fashioned out of a bin bag !! The height of haute couture !! Thankfully our shower is very placid !!

@chococakey I'm sorry it's really putting you through the mill but you are half way through the toughest bit. I hear what you are saying about wanting to preserve as much of 'you' as you can for your little boy- I think lots of us are more worried about the impact on our loved ones than ourselves and to this day I've never been brave enough to tell my children or mother about my cancer- I was lucky not to need chemo so that was relatively easy. But your hair is not what makes you 'you'. We can all see that the essence of Chococakey is courage, kindness and mother-love. Cancer can't touch those so even if you have different hair or none at all for a few weeks, you will still be you for your family.

@chococakey like @dancingwhilstfacingthemusic I wore a LOT of clothes when having chemo and cold capping. I also always took painkillers about an hour before. I lost most of my hair on EC (I had four lots of EC), but when I started my 12 lots of paclitaxel my hair started growing back. I kept cold capping throughout, and the nurses gave me a surgical cap to wear when I had hardly any hair. I did wonder why I bothered with the cold cap, but I'm glad I kept going because of the swift regrowth. It's a very personal decision though, as the whole chemo thing is bad enough, without adding in a freezing head.

@TheHonourablePenelopeBuntyWindermere my cancer was triple positive, and grade 3 at diagnosis. I had 4 lots of EC and 12 lots of paclitaxel chemo, then a lumpectomy, and I start radiotherapy tomorrow. Herceptin injections for a year, and 3 years of six monthly Zometa infusions.

Thank you @BatshitCrazyWoman . This is all helpful to know for when I go for my post op appointment with the surgeon. Hope your radiotherapy goes well tomorrow.

Thanks @chococakey, let’s hope we can find a way to live with it eh? My mind is whirring crazily at present. I hope your shed slows down soon, I understand how important keeping things as normal as possible for those around us is, it was the only thing that got me up and dressed some days.

@TheHonourablePenelopeBuntyWindermere hope you’re comfortable and able to get some decent rest. Flannels and help from my husband were my go to at first, it feels so nice to get clean, then the method @TheFormidableMrsC describes.

Sounds like you are well sorted though. 😀

I’ve started letrozole this evening. May the odds ever be in my favour eh?

Just had a phone call from the hospital asking me to go in for an appointment on Thursday.
I asked for some more information as my consultant was confident he would just call me, so it’s clearly more than just giving me a result and sending me on my way.
She said she didn’t have any information and passed me over to the Breast Care Nurses but have had to leave them a voicemail.

Here goes …

The Breast Care Nurse has just called me back. She wouldn’t give me any information, said it had to come via the Consultant and at that appointment there would be a clear plan.

I stressed that I need to feel prepared with any questions I might have but she didn’t budge.

If this is the case, surely there can’t be a one size fits all approach. I appreciate some people don’t want to know but I cope so much better armed with information. Even if they are just possibilities. The unknown is horrendous for me 😢