Likely breast cancer after ultrasound - thread 4

[spartanrunnergirl]

Hi all!

Thought I’d start thread 4. I’ll put links to the previous threads below.

Welcome.

The original thread was started after I had a mammogram recall and was told at the ultrasound that it was likely I had breast cancer - before biopsies were taken, and before I was ready to hear that (if you are ever ready to hear that).

Three full threads later we are still sharing support, experiences, and advice. We’ve celebrated breast cancer wins and thrown virtual hugs around those who’ve needed it. (We’ve all needed it 💗)

This is a hugely kind and caring bit of Mumsnet - where we’ve all felt that awful fear waiting for scans, tests, results, or with an early and uncertain breast cancer diagnosis.

You are not alone.

This is the awful club - full of awesome women💗

Well done for getting this investigated so early. Please expect a flurry of very short notice hospital appointments as the team looking after you gather as much detailed info as possible to work out what treatment will be best for you.
In the meantime you may find it helpful to look at the Breast Cancer Now charity’s website. They offer a Breast Care Nurses helpline and a forum as well as a range of information and similar. I found them incredibly helpful when I was diagnosed with stage 2 HER+ breast cancer end January.

My cancer was invasive ductal carcinoma, stage two. I had a grade three tumour. In my case, it was surgery first then recovery for about six weeks. They send some cancers for oncotype analysis in the USA. That is to decide whether Chemo would be of benefit of or not. When I was at your stage, the Breast surgeon told me I was looking at between six months to a year of active treatment. I had my surgery at the end of January and only just finished radiotherapy a few weeks ago. I haven’t been at work, but that is a very personal decision. I work part-time but in a very stressful role, and I have another underlying condition. I’m very glad I haven’t been at work, but I have spoken to people who were glad to work for the distraction. Have they given you a treatment plan? You will get through this. It’s so so hard but this thread is very helpful. If you can, find a Maggie’s Center, that has helped me enormously.

Thanks for the kind words @triballeader @cancerycaramelbear. The early investigation was purely due to my first post 50 breast screening which picked it up, I can't feel anything there so grateful again to the amazing NHS.

I haven't got a treatment plan yet. MRI within the next fortnight to determine how big it is and whether there's more than they initially found and then take it from there.

That's quite a long journey @cancerycaramelbear. My job is also quite stressful. I'm a SME in a very specialist financial area and generally come in when firms are overwhelmed to help troubleshoot. I think I'm probably better off staying out of work until at least until I have an idea of treatment and then seeing whether I can do something either part time or short term.

Am also a bit concerned about brain fog and irritability when I come off HRT affecting work. Some of my co-workers can be quite trying at the best of times! I also have two hormonal teenagers, pity my DH.

Hi, I was hoping I could join the thread. I am 46 and found a lump in my armpit a month ago which turned out to be a lymph node. Biopsy has shown breast cancer in the node. The mammogram showed two small areas of calcification in the breast on that side (11mm and 7mm) but the ultrasound was normal. I’ve got a follow up appointment tomorrow to discuss the biopsy results and an appointment on Thursday to have the vacuum biopsies done.

I’m still a bit shellshocked by the whole thing at the moment. I’m mainly just hoping that it’s still at an early stage. I feel completely well in myself so it’s really hard to get my head round the diagnosis.

hi @Stowickthevast and @Restlessdreams1994, sorry to hear about your recent diagnoses, it’s all so daunting to start with, but definitely easier once a treatment plan is underway.

in terms of work, I had a stage 1, grade 1, invasive ductal carcinoma, 9mm; so initially the treatment plan seemed quite simple- lumpectomy with sentinel lymph removal (but also offered mastectomy) and radiotherapy, with no chemo needed unless there were signs of cancer in the lymph. Thanks fully there weren’t. So I took 3 months off work. But then I needed further surgery after the first lumpectomy op due to the margins not being clear, so I’m now into my fourth month off. I did 3 weeks of PT hours between the second op and start of radio, but in hindsight for me that was a mistake- I felt very ratty and tired.

But I’m 3 weeks on from finishing radio tomorrow, and on my second week of holidaying in Majorca, booked to see the eclipse. It’s hasn’t always been easy, spf50 on the treated area, covering up, rash vests in the pool and lots of rest, but I’m still having a lovely time. The radio area is quite pink, and I’ve had a rash for the last 10 days, which I had checked out before travelling, and given more flamigel and prescribed anti allergy tablets. I searched high and low for linen tops which would cover the afffected area, but hadn’t counted on being too itchy to wear a bra, so white tops have been out of the question. Not my usual shop of choice but boohoo proved great for affordable and feminine linen tops. Posting this in case it helps others in terms of planned holidays.

I am going for blood cross matching and related blood checks tomorrow. booked for surgery on Wednesday. using everything to try and stay reasonably calm as surgery or at least the anaesthetics scare me far more than chemo did.

To those at the very start of that journey no one chooses, I concur with others, the not knowing what will need to happen is bloody awful. you end up with a lot of short notice extra tests ( wish I had been warned about those) as the hospital team looking after you gathers as much info as possible to work out which treatment is the best option in your own case. I was under the stupid idea Ìt was one size fits all but it really is not. ITs okay to tell staff if you feel scared or worried, its okay to call the breast care nurses for support at the hospital you are under and its okay to not be okay about it all. With a treatment plan in place and support Ìt does get a little easier day by day.

@Restlessdreams1994 Sorry to hear you're on this journey too. I don't have any symptoms so know what you mean that it feels weird. If I had had to choose which bit of my creaky body might give out, it wouldn't have been my boobs!

Thanks for all the information @dibly. Your diagnosis sounds reasonably similar to mine, although my area is potentially a bit bigger, so it's good to know what a possible outcome may be. Glad to hear you're managing to have a lovely holiday. I went swimming with my teens locally yesterday and was wondering when I may be able to do that again. I am not a fan of rash vests but will learn I guess.

Best of luck with the operation on Wednesday @triballeader.

Thank you for the welcome.

Clinic wasn’t too bad: they think it’s early as the rest of the lymph nodes look normal on ultrasound. It’s ER positive but the Her2 and grading isn’t known yet. They want me to have an MRI to further assess if there’s any tumour as they couldn’t see anything on ultrasound. I’ve also got to have vacuum biopsies of the calcified areas. Then it’s MDT discussion to decide on a plan. Most likely it will be some form of surgery first.

I feel a bit better for having more information and also knowing there’s a good chance it’s early and more treatable than I originally thought. I’m trying to stay positive and use this time before treatment to build up my fitness as much as possible but I’m struggling with lack of sleep due to my mind racing.

Thank you @dibly for sharing your experiences. I’m one of those people who feels better having lots of information and knowing what to expect!

Hope your surgery went well today @triballeader xx

So I had my surgery on Friday. I was in theatre for 6.5 hours, they had to take 1/3 of my left breast and my sentinel nodes, did a reconstruction on that side, and then a reduction on the other side. The part they had to take was towards my cleavage, which is why I think the surgery took so long - the plastic surgeon said it’d be a challenge to do the reconstruction . I came out of hospital same day, and honestly it has been awkward moving about and stuff, but the pain has been minimal. I think I’ve taken four or five codeine and other than that just the odd paracetamol or two since I left hospital on Friday night. Getting into and out of bed is hard because I can’t put any weight through my arms, but my partner is helping me.

I am having trouble sleeping propped up and on my back because I’m a side sleeper, and I have found my sleep is a bit disturbed anyway, presumably because of the anaesthetic (hence my night time ponderings). I’m just rolling with it though and napping in the day if I need to. I am swollen, but the post surgical bras seem to be keeping things comfortable.

My dressings are looking pretty yuk so I’m going to phone my GP in the morning - I can’t remember what the hospital said about the district nurse coming to change the dressings and whether I organise that with my GP or whether the hospital will organise it.

I would say the first day after surgery I felt elated that it was done and actually felt much better in myself than I expected. Yesterday (day two) was much more difficult and I almost felt like my body was in shock, sort of shivery/shaky and much more tired than I had been the day before. My partner is back at work tomorrow so my 18 and 20 year olds are here with me. Hopefully I manage to get someone out to change the dressings, but other than that I think rest and recuperation are in order!

Well done on getting through your surgery @MookyPooks . I am 3.5 weeks post surgery for a mastectomy and reconstruction on one side. I agree the pain was minimal but the sleeping is hellish . I cannot sleep on my back either and was getting quite bad back ache from it.
I am only just sneaking on to my side now occasionally but still feel guilty when I do as I have an implant so have to be careful I don’t dislodge it while it is healing Have you got drains in? they are a real pain
I had a phone call from the district nurse who came round to see me . I had the surgery on the Thursday and they rang Friday so hopefully you will have a call today
Good luck with your recovery and enjoy being waited on by your children, let’s face it this is a rare opportunity after years of waiting on them

@MookyPooks if Ìt helps you to feel a bit better I was warned the end of day 2 to the start of day 4 the post surgical Adrenalin dip happens. It can make you feel a bit crap as your body acts as if you have been attacked and that has knock on effects. I opted for flat closure having a SMX on Weds 19th and l still had a lousy Saturday. Needed to sleep for 10 hours instead of normal 7.

give yourself time as a masectomy regardless of the type is tough emotionally to deal with. Be kind to yourself and accept offers of genuine help as best you can. IMHO it’s okay to ignore the vague offers or say nope if it would be unhelpful.

Glad it went ok @MookyPooks and thank you @Puravida23 and @triballeader for sharing your experiences, it helps to have an idea what to expect.

I had my vac biopsies and MRI last week. The radiologist told me that the MRI didn’t show any definite tumour in my right breast but it did show a small mass on the left. They think it’s most likely a benign fibroadenoma but they want to biopsy it to be sure so I’m going back in to have that done tomorrow.

Still waiting for the vac biopsy results but hoping that one of these will show DCIS with a focus of invasive disease so that I can have a lumpectomy.

Wishing a speedy recovery and positive histology results to everyone post-op xx

I'm still waiting to hear back from my MRI last week @Restlessdreams1994 .
They said it would take a couple of weeks. I was a bit surprised by what an unpleasant experience it was. Think I've watched too many medical dramas where people just listen to the Drs gossiping while they're in the MRI machine. This was 40 minutes not moving with sounds like being at a bad rave having a bad trip!

Hope you're recovering well @MookyPooks

@Stowickthevastthe MRI sounds awful! Hopefully you hear back soon.

I’m almost a week post-op and still having up and down days. In terms of my wounds, everything feels great. I’ve been doing the exercises that the surgeon said to and can now get both arms to 90 degrees as she’d asked me to by tomorrow. The right side (reduction only) is pretty mobile, the left side (cancer side so large bit removed, reconstruction and sentinel node biopsy) feels slightly tighter as expected, but uncomfortable rather than sore. I’ve not taken any painkillers for a few days because the constipation was worse than the soreness, but I did have to attend the out of hours clinic on Monday night because my left one became slightly red, sore, and swollen, and I had that weird skin crawling sensation yiu get when you’re starting a temperature. They gave me antibiotics and it has all settled down (half way through the course now).

The absolute worst thing for me is still the sleeping. I just cannot sleep propped up and on my back. I tried taking a diazepam (GP prescribed for me to take before surgery because I have had some awful hospital situations in the past and really struggle with anxiety), but whilst it helped me go to sleep I still woke up and couldn’t get back off. I can’t nap during the day either - I wake up with this weird sense of dread and don’t know who I am or where I am for a few seconds, which I really dislike. I just feel exhausted, can’t concentrate on anything for more than 15-30 minutes, and when I lay in bed at night I just ache all over because that sleeping position feels so unnatural to me! I tried turning on to my side briefly last night for some relief, but felt like my nipples might pop off, so hastily turned back onto my back 😂 I’m thinking of phoning to see if I can speak to my GP for sleeping tablets, although I am reluctant to do so (plus there’s almost no way I could go and get them anyway).

I am dreaming of sleeping on my side again!

I hope everyone else is getting on okay xx

oh Gosh not being able to sleep on your side is so awful. Could you do a telephone appointment with the GP and get someone to pick up sleeping pills for you?

Sorry to hear that @MookyPooks, I found not sleeping on my side impossible and ended up doing it anyway, but used cushions to try and make myself comfortable. When I spoke to the nurse about it she said sleep is more important. Fingers crossed you get a better nights sleep tonight.

Thanks @Stowickthevast and @dibly. In the end I gave up and took one of the big pillows out. I was still propped up slightly but not as much, and I found that if I turned very slightly to the side and ‘flamingoed’ my leg like I do when I sleep on my side (so foot against my knee, albeit the other way over from when I side sleep) I could actually get off to sleep. The one advantage to sleeping on my back is putting my earbuds in which I can’t do when I side sleep, so I listened to some Gregorian chants - no idea why but they’ve always helped me sleep, even though I’m 100% non religious! I do use a Snoozeband usually, but it needs a wash and it’s a faff to take it apart!

I know I’m moaning about my sleep a bit, but for anyone just at the beginning of this journey, it hadn’t been half as bad as I’d imagined. I’m already 1 week post-surgery and I know that in a few weeks or months more, this will all feel like a distant memory.

I am normally a side sleeper but still cannot do that.

I eventually came up with placing a triangular shape pillow on the base of the bed, using a pillow in the middle of the gap to create a ramp type set up then using my normal pillow on top where my head goes. I bunch the side in to give the illusion to my face I am lying on my side.

An additional tip is to place a pillow under your knees so your legs are not totally flat, Ìt stops you slowly sliding down the bed and stops your leg muscles from getting grumpy. Think of it as lying on a padded positionable Sun lounger.

Hopefully the anti-biotic’s are kicking the infection to bits and your starting to really heal.
Hope all goes well for you.

Somehow missed that thread 3 filled up. Need to catchup with how everyone is, but hope you’re all getting on ok.

I’ve never really got back to feeling im ok, the fatigue levels from letrozole, ribociclib and zolondronic acid treatments have left me on my knees literally. The thought of even getting to the kitchen to ‘cook’ (zap in microwave a ready meal) means I’ll probably eat biscuits again. Im now on six monthly zolondronic acid and it’s killing me, im two weeks into this one and it’s hardly any better but no pain fortunately.

I seem to get the impression it is what it is and im unfortunate to be suffering awful side effects of everything they chuck at me. Roll on Christmas. If my mammogram is ok im probably going to stop some/all treatments, my quality of life is awful. I hardly do anything because I don’t have any energy to do it. Im existing without any joy.

Sorry to hear that @Thirdtimeunlucky2025 , your side effects sound seriously grim. Is anyone helping you to explore counter measures for them, or do you feel like you’re on your own?

Sending huge hugs, quality of life is so important.

Another quick update from me. I had my pathology results yesterday, and unfortunately it’s not the news I wanted to hear. They have found another small area of disease on the very margins of what they removed, and have also found cancer cells in two of the sentinel nodes, so it’s back to surgery for me in three weeks, and then most likely chemotherapy. To say I am devastated is an understatement!

Both of my daughters leave to start university in the next two weeks, so I’ve just told them I need a bit more surgery to make sure, and will leave it at that until the next pathology results are here and we have a clearer picture. I want them to enjoy their first weeks at university without worrying about their mum!

I’m feeling frightened and overwhelmed, if I’m honest.

@MookyPooks , you can contact the Breast Care Nurses helpline for support at breast cancer now as well as the breast care nurses at your hospital. They also have a forum where you can contact the BCNs and ask any questions. I get wanting to not worry your daughters as they go to Uni but it can be a lot on your own. there is support out there for when you feel ready.
I am so sorry you did not have clear margins and lymph nodes as you hoped and hope your hospital is able to come up with a treatment plan that is bespoke to your needs. As others have said it’s the not knowing and waiting that is really hard. Be kind and gentle with yourself.

Hi all. @MookyPooks sorry to hear that, it must be psychologically draining to have to go through the surgery anticipation and stress again. I remember the despair I felt when my oncotype told me I would need chemo. A friend of mine had to go back for surgery due to not having clear margins. She is out the other side now and you will be too x

I have a question for those of you who have been prescribed ADcal. I hate those things! I had been merrily taking them after breakfast and dinner then someone told me about how whole grains and spinach (both big parts of my diet) interfere with absorption and you should leave two hours after eating them to take adcal. Also learned that adcal interferes with iron absorption - I take a daily iron pill. I am terrible at remembering to take pills at the best of times, but a regime where I have to take adcal two hours after eating something with whole grains is so difficult to maintain! I am usually busy doing something at those times. I sometimes set a reminder on my watch, but can’t guarantee I won’t be busy when it goes off and then forget again. I’m going to talk to the oncologist and pharmacist about all this, whether I can get away with taking more dietary calcium as my dexa scan showed no osteoporosis and I have started weight training. I would be fine taking just vit D, did that for years anyway.

I’m over a month out of active treatment now. Doing ok on Letrozole although my knee is giving me bother and I’m definitely stiffer than normal (got an existing arthritis condition too). I see the onc late this month, presumably to discuss ribociclib. Hair is growing back and I’ve been on a holiday as well as visit to in laws abroad. Boob is still giving me a bit of bother, water retention and rubbing on the scars if I have any type of seam near them. Getting on with life is tough though…

@cancerycaramelbear can you not take the adcal perhaps before you go to bed?

Are you taking it because of Zolandronic acid infusions? I’ve just had my first six month one and I don’t need to take it anymore. I think they throw it at you for the every six weeks infusions.

they started me on 400 MG of Ribo, but the last packet I took was reduced to 200 MG, unfortunately the constipation and the skin falling off my feet was horrendous. Talking to the oncologist last week she did say it could take 2 to 3 months for The ribo to reduce in my body. The skin problems are much improved but the constipation isn’t. They gave me anti-diarrhoea tablets when they prescribed it and am quite surprised I’ve gone the other way. I but supermarket own constipation tablets and they are best , brand ones have me running for the loo when they kick in.

Eek re the ribo. I’m seeing onc in a couple of weeks but away at half term so doubt he’ll want me to start them until I’m back. Not looking forward to it. I have to take the adcal twice a day, so am doing an evening one, two hours after dinner, if I remember! Yes because of the infusions and letrozole, for bone health. And I have an arthritic condition in my spine. That first infusion knocked me for six. I could barely move and had a temp.