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💗

Hi @DoctorMartin I am very happy for you. That is great news and must be such a relief!

Hello - only just stumbled across this thread and really wish I’d found it sooner (though of course if I got just one wish…that I didn’t need to be here at all?!). Have had 5 of 6 rounds of chemotherapy and immunotherapy for HER2+ grade 3 breast cancer. Have appointment this evening with the breast consultant to arrange the surgery for after my final chemo (having single mastectomy). Brain is now still trying to deal with the chemo while also getting on board with surgery…which I’m frankly terrified of. And then last night had oncology appointment where I was given the results of follow up echo CG and told that my heart function has been impacted by the herceptin treatment - so will only be having chemo last round and need further echos to check if the heart impact reverses itself. Have any of you ladies had similar?

Hi, I found this thread in the night while I was doomscrolling because I couldn’t sleep!

I was diagnosed a few weeks ago with stage 1 grade 1 strongly hormone positive HER2 negative breast cancer. I’m going to have quite a large area of breast tissue removed (about 1/4 to 1/3 of my breast) because there are two areas of disease (one larger, one smaller, but quite distant from each other), so I’m having a reconstruction on that side and a reduction on the other side at the same time to match things up. I’m in that weird in between time, where I’ve spoken to the two surgeons but don’t yet have a date for surgery and don’t yet know if I’ll need chemotherapy or radiotherapy. I had a blood test this morning because they want to start me on letrozole asap but I have no idea whether I’m through menopause - I had a contraceptive implant so haven’t had a period for 7 years.

I’m trying to use this waiting time usefully, upping my exercise (walking, yoga, and some weights but only to strengthen my legs etc so I can stand up and sit down more easily), and making sure I eat well and reduce alcohol to nothing.

A couple of practical questions I have though, if you don’t mind? My partner is a teacher and although he can get time off when I have my surgery, he won’t be able to stay home to look after me in the first few days. I do have an 18 year old daughter who I had thought to send to her dads for a few days, but now I’m wondering if I should have someone with me in those first few days or whether I’ll be able to manage on my own during the day. Also, I believe I won’t be able to shower or wash my hair for a while. I’m a bit germ phobic and shower twice a day currently. Any hints for keeping myself feeling clean and fresh? I know that sounds really trivial in the scheme of things, but I know I’m going to find that difficult!

Are there any other practical considerations that I might not have thought of, aside from things like the bras, button shirts, pillows etc?

Thank you 😊

@Tarka47 hello I too have just finished pre surgery chemo for HER+ grade 2. Ìt has not been easy. My SMX and auxillary node clearance surgery is booked for the 19th August. I suspect we maybe due surgery around the same time.

My echocardiograms show I have coped with Phesgo but my Hb is still 8.5 (Ìt was 7.3! hence blood transfusions) and I am still annoyed by peripheral neuropathy. Side effects are the least fun selection box to play pick and mix from. I am far more terrified of the aneathetic and needing another em protocol blood transfusion whilst awake than l am of being under in surgery.
trying to do strengthening physio, walking and more of the do a bit than rest a bit over the next three weeks so l can be as Ìt as l can be for surgery.

Have you had your booking in for surgery appointment as yet?
I have found the Breast Cancer Now forum, Flat Friends ( not just for those who choose to be flat but also therefor those who have no choice or who have to defer reconstruction and live with with either a flat DMx or SMX for a time.) very supportive as I will happily admit most of my hospital trauma comes from previous surgery. ( Please note I have assorted drug allergies and had some life threatening bleeds during previous surgery to the point the hospital haematologists suspected female inherited blood disorders that affect clotting. SInce been tested and in the very upper end of what is normal hence my blood does not always clot as fast as surgeons hope)

@MookyPooks I was told by my nurse not to lie in bed after surgery. You should be fine to be alone, after the first 24 hours. My dh took time off because we have young children, but I would of managed with help with school run.

I am about to have my Mastectomy on Thursday (single with implant reconstruction) so I will be able to let you know how my recovery goes @MookyPooks I know my DH is working the following Monday so I will be home alone from day 4

@MookyPooks might be worth contacting your Breast Care Nurse team and ask them for advice. I suspect if you have reconstruction and reduction you may need to stayin a bit longer than a day case patient. Your BCNs will be more familiar with the work of the surgeon you are booked under and have more of an idea of the time you need to stay in hospital.

they will also be able to advise you on how best to keep clean and when and how to have a shower to protect your incisions as they heal. Most surgical dressings are water resistant rather than waterproof so it might not be sensible to get them wet as you would use a shower normally.

it is when you get home you will need help as with a straightforward masectomy only you are warned against heavy lifting. That could include a kettle filled with water. Opening a jar to make a drink can be a challenge with one side out of action never mind two so yes Ìt may be wise to speak with your daughter and askif she would be willing to give you a hand for at least the first week. Build in some downtime when she knows she can have time off, for example when your partner gets home and can take over or if she could have friends over.

my two DDs have arranged to do one week each, eldest is taking time from work the first week so the younger dd can still go on holiday for a week with her friends then they will swap over. That means I get two weeks of extra help together over the initial recovery time post surgery.

Met with the breast consultant this evening - he’s getting me in for surgery for the first week in September. Follow up appointment last week of August to confirm decision on reconstruction options…so need to somehow make a decision. Will take a look at the BCN forums - thanks for the recommendation. I’m quite big boobed - so feel like I need reconstruction as otherwise I’d be very lopsided and feel like any prosthesis would be cumbersome and uncomfortable. But no reconstruction options seem right either. There’s a risk I’ll need radiotherapy- so seems like temporary implant followed by then secondary surgery for either permanent implant or flap reconstruction…but more surgery and recovery after what is already a long treatment plan.

my fear of surgery comes from a massive PPH I had after I had my daughter. I know that’s different - but can’t help thinking something hideous is going to happen on the table. Think I need to talk all this through with someone.

@Tarka47 I do get just how terrifying a PPH can be, had two. one was extremely life threatening during a preterm cat 1 em c/sec after I started an APH and the second was no fun either. THe third was planned for with a blood biker outside the theatre ready to run for extra blood and a full heamotoma team in along with NNICU,obs and all. THat was for a life threatening planned c/sec under GA with beds booked in NNICU and ICU for both of us then my youngest DD being born in hypothermic shock and well under the o.4th needing hospital care then the regional children’s for a couple of years to survive you get some idea of why hospitals scare me silly. This followed on from previous trauma of needing an op and a longer stay in hospital aged five with some b.a. nurses who should never have been near children. Thank God that has now changed! Having an em op during the height of covid did not help either as I had just seen the last of my family die due to covid.

The most useful thing I did was contact the local charity run cancer centre based well away from the hospital for support. as soon as they saw the state I was in they arranged for both trauma counselling and trauma therapy during chemotherapy on the grounds ‘you cannot wait two years and we are not the NHS’ which was NOT fun to do but has really helped and has taught me some better coping strategies. Thankfully I have an extremely good and compassionate. Oncologist who spotted I had far more going on than just struggling with being told I had breast cancer. THey have gone way beyond The extra mile for me and have organised reasonable adjustments wherever possible with both the MDT, the surgeons and the Chemo unit. Again that has also helped. it’s been slow but I did reach the point Dh was able to stay in the waiting room for periods of time rather than having to be with me for the whole of chemo. The unit has such limited space this was a special reasonable adjustment requested by oncologist that was made my the unit for me. AGain that slowly started to help along with trauma therapy.

In addition the hospital have organised extra pre surgery blood tests to ensure my blood is as good as it can be before surgery. I was moved from one surgeon to one I felt I could trust far more by the intervention of the oncologist who worked out the first one had truly scared me. the surgeon organised by booking in visit with a theatre nurse who specialises in trauma around surgery, again that helped as she could remind me to use better coping strategies rand gave me a double length appointment to take a detailed history. take it from me you CAN hand the booking in nurse a written list of previous ops. I recommend it if previous trauma from a PPH makes it hard to talk. I will be giving the anaesthetist a shorter written list of previous ops and anaesthetics as I am not sure I will be able to talk to them on the actual day.

IF you can access similar counselling and/or therapy where you are it has a good chance to be able to help. IF you really have not a clue where to start to begin with your GP as they will know what statutory and charity run support is available in your area. it may also be possible to arrange a traumatic delivery debrief with a specilist midwife IF the hospital you had your child at offers Ìt. That was something I took up which also helped. Therapist tried EMDT but ended up having to use inner child work as the worst trauma was tied to being in a hospital miles from family. I was well on the way to deep seated PTSD from Ìt with the breast cancer diagnosis being. IF you have any concerns you can contact your hospitals Breast Care Nurses who will be able to advocate for you and speak with surgical teams to highlight real worries and concerns when needed. remember if your surgeon does not know they cannot support you. I remember mine wondering why I had written down so many questions about em blood transfusions and questions about blood tests pre surgery until my DH explained just how life threatening my first em c/sec turned out to be and how it had bought me to the attention of the haematologists.

My final blood tests presurgery are booked on the 17th Aug. SO far everything is slowly moving back towards being mostly normal with my Hb having been hit hard by chemo but slowly catching up. TBH I have found almost all the staff are willing to do what they can to be supportive but to get that it matters to advocate for yourself or at least take someone you trust to advocate for you. If staff know there is a genuine reason why you are requesting some extra support you tend to get it. My eldest DD is a trauma, burns and plastics nurse who always says staff would far rather know your struggling with something so they can provide more support than wonder if they did or said something wrong because you have burst into tears or gone off like a claymore mine.

ÝOu May find this support group of some use. they provide support in the UK for woman considering surgical reconstruction due to breast cancer in a similar way to flat friends support for woman facing being flat from choice or for medical reasons. keepingabreast.org.uk/

Hi. Wondering if anyone has gone on holiday immediately after radiotherapy. I was diagnosed with Breast Cancer and had lumpectomy and bilateral therapeutic mammoplasty at the end of March. Final diagnosis was 3.5cm intermediate and high grade DCIS and 1.6mm of grade 2 IDC ER8 HER- clear margins and no nodal involvement. So pretty much as good as it can get if you must get BC. Only problem is that it has taken four and a half months for the wounds to fully heal. I had a combined total of more than 3kg breast tissue removed. Started off okay, but went down hill when wounds became infected. My surgeon and her team have been absolutely fantastic - I’ve tried every dressing you can possibly imagine, and some my surgeon had no clue about. Four courses of antibiotics. Tissue viability team and plastic surgeons involved too.

Anyway, we’d nearly given up on the prospect of radiotherapy when lo and behold, I’ve suddenly healed up and now it’s full steam ahead. Problem is that back when I thought it would all be done and dusted in a couple of months, I booked a three week holiday. I’ve now got my radiotherapy dates and I finish literally two days before we go.

Has anyone else done this. It’s a southern European country and it will undoubtedly be v hot. It is not, however, a beach holiday and we’ll be staying with family. I’m a bit gutted that I assume I won’t be allowed to swim (rivers), and I’m expecting to cover up completely, slather on factor 50 and sit in the shade.

There’s no question of us cancelling it. Insurance wouldn’t pay up as I booked it after diagnosis, part of it involves a family wedding and christening and my DH who is overworked and desperately needs a break, hasn’t seen his family for two years.

TBH I was tempted to decline the Rx and take my chances. Would have no effect on long-term prognosis only local recurrence, and if I was four years older, they wouldn’t offer it to me anyway. Can’t leave it until we come back as it has to be done within six months of the op.

Thoughts?

Hi @Anonymousfivetrillion, sorry you’ve been through the mill and your holiday plans have been scuppered a bit. Similar situation for me, diagnosed on April, lumpectomy May, second lumpectomy June to clear the margins, and I finished RT on Monday. We fly next Saturday. Like you cancelling was impossible, villa booked with friends, flights and hotels all sorted separately.

Ive been told firmly it’s spf50, to cover up, sit in shade, sun hat, can swim but must wear a rash vest (tbh I’m more of a sit by the pool and dunk my feet in anyway). So not exactly the carefree hol we needed, but we’re going. So far there’s no sign of any skin reaction, but I plan to have the nursing team on speed dial if there’s any sign of a reaction before we go, and make sure we’re fully armed with creams and painkillers etc.

I do feel nervous about it, but I’m sensible in the sun anyway, and I guess worst case scenario is I’m shattered and sleep most of the day, but I’d still hope to enjoy the evenings as much as possible.

Hope all goes well with your treatment, on day 3 my scar felt quite sore, so the radiologist gave me flamigel which seems to be working well.

Thanks @triballeader, I’ve asked my youngest daughter if she’d mind staying the first week. Not sure whether to ask eldest to come the second - she’s autistic and I think it’d stress her out. I think I’d feel bad asking youngest to stay and help for two weeks though, although I’m sure she’d happily do it.

I’ve had my appointment through for my pre-op for 10th August. The plastic surgeon I saw a couple of weeks ago thought I was pencilled in for surgery on 21st August, although she couldn’t log in to the hospital system to let me know for sure. I think that ties in with the pre-op though.

Had a long chat with my boss yesterday (I was due an appraisal anyway so it was part of that). Thankfully he’s been fab about it all, and I can take whatever time I need. My colleague’s daughter is kicking her heels just now waiting to go back to uni/college, so he’s asked me to train her up to do the basic data entry part of my job. He knows I’ll be worried about work but wants me only to concentrate on getting better. Between my colleague, her daughter temporarily, another colleague, and my boss they can manage my workload for a while which has taken a massive weight off my shoulders!

@Puravida23good luck for your surgery today xx

Thanks dibley. That’s pretty much what I planned. I’ve just been up for my plannning CT and asked about the swimming with a rash vest - she was a bit unsure about the rivers, but said provided there was no broken skin, I slathered on factor 50 and covered up, should be okay. Like you, I’m not usually too bothered about a lot of swimming, but I know that if I was told no, I’d immediately be desperate to! If I do swim, it’ll be a quick dip to cool off.

My lovely specialist nurse practitioner has already given me a tube of Flaminal Forte and I’ll take all my leftover dressings, antibac contact layer stuff, etc, with me so I’m prepared. Enjoy your holiday!

@MookyPooks I had a lumpectomy and bilateral therapeutic mammoplasty with ‘lift’ which I guess is pretty much what you’re having. I had very big breasts and was offered a reduction as side effects from radiotherapy tend to be worse with bigger boobs. They took away over 3kg of breast tissue on total, which must have been at least 2/3 of each. I had it as a day case as I asked surgeon and she said she’d do her best. They won’t let you out unless you have someone with you at all times for the first 24 hours though, and I think I had to live less than an hour from the hospital. Although I was glad to get home, I did throw up three times in rapid succession (opioids) practically as soon as I walked in the door! I found out later that no-one in the operating theatre expected me to go home the same day.

My 24 year old DD was at home and did a bit of running and fetching for me, but I was up the following morning. You can’t lift anything much at all or stretch to reach stuff for the first few weeks, but there’s plenty you can and should do. One thing I found useful was one of those litter picker/grabber sticks. I’m a bit clumsy anyway and found I dropped quite a few things like my phone and tv remote. It was quite uncomfortable to bend to pick stuff up and that helped.

Showering was okay. Dressings were showerproof, so provided I didn’t stand directly under the shower head and soak them it was fine. We’ve got a detachable shower head as well as the overhead one, so I mostly used that and directed it where it was most important. You may also come out with pico negative pressure dressings (I did). They’re little buzzing bastard machines and sound a bit daunting to manage, but are fine. They are also tough as anything - I was always dropping mine on the tiled bathroom floor! You’ll find a way to make it work for you!

Just wanted to update, feeling much better, little down in the dumps. Physically though much better.

Did chemo make anyone else feel low?

Very grateful to feel brighter though, I just wanted to update to say it does get better!

Yes chemo sent me very low, it does improve. Glad you are feeling better.

Glad you are feeling better @Imtiredthisyear I think the whole cancer journey is an emotional whirlwind. You just have to ride out the troughs and hope the highs are not far behind.
I am just coming to terms with my new breast and have been up and down all weekend since the Op on Thursday . A lot of it is drug related but there is also the emotional battering we have all been subjected to accepting this new normality particularly with Breast Cancer as nearly all of us would have been feeling fit and well prior to diagnosis with no health concerns . To then be launched into an often very aggressive treatment plan it’s tough