Likely breast cancer after ultrasound - thread 2

[spartanrunnergirl]

Welcome. The original thread (linked here ) 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).

I drove home gulping down tears with no idea what to do and no idea how to get through the days until my biopsy results. So I opened Mumsnet and made the original post, hoping someone might read it, and they did! One full thread 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 💗)

For anyone opening this thread because they’ve found themselves in the same situation I was in … 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 diagnosis.

You are not alone.

This is the awful club - full of awesome women💗

What was the outcome for you?

I posted earlier about my friend who has this post BC and after five years of tamoxifen. She had some fibroids, a couple of ovarian cysts and some womb thickening. None of it is cancer. They have to be sure of course, but try not to think the worse until you know. Friend is booked in for surgery for removal. I’m keeping everything crossed for you.

Really sorry to hear this and hope you can find some positivity and comfort from this thread. Tests take time and is causes fear because you are just desperate to get treatment started but they won’t put you at risk and getting the diagnostics right is so that you have the best treatment plan. You will feel much better when you know what you’re dealing with and more in control when it gets started 💐

@mummyofhyperDD I'm so sorry you are going through this, but you will find so much support here, everyone is so friendly, it has really helped me.

I was diagnosed on 2nd July, and I am having my surgery on 5th September, it has felt like a long slog but most of that time was waiting for results of scans, treatment plans etc once they get the results in things do move fairly quickly. Waiting is horrible it is the worst bit, everyone said to me once you have a treatment plan in place you will feel so much better and you do.

@MrTiddlesTheCat I was ok and got the all clear 10 days later. My uterine lining was just over the level for “safe”, hence the biopsy. The specialist thought it was due to the hrt I was then on.

I was diagnosed a year later with bc and my bc specialist said my hrt was feeding the tumour (I was hormone positive). I have wondered since then about the link with the thicker uterine lining and my bc. It is as it is, and I’m through treatments now and on hormone therapy.

Fingers crossed for you.

I really hope what they are investigating turns out to be nothing to worry about, @MrTiddlesTheCat.Sounds like you have been through quite enough, I am very sorry.

@MrTiddlesTheCat my story is similar to @Bimblesalong . Last January I had a hysteroscopy under GA (including removal of a suspect ?polyp ?fibroid) due to uterine thickening. I was on HRT. Nothing abnormal found, growth was benign. I was diagnosed with triple positive breast cancer 7 months later. Now off HRT, obviously! I hope all is well for you too.

Hi all. Joined the club two days ago with a BC diagnosis after finding a lump 3 weeks ago. I was high risk as my mum had it at 35 (40 years and two other cancers later, she's still going strong) but still a shock. Will read back on the thread soon but for now, got an MRI and having my contraceptive implant taken out on Monday and waiting for HER2 results before treatment plan is finalised.

@MissFizzyPop welcome. Hope you get your results soon so treatment can start. I think I waited 2 weeks but treatment started soon after. Hopefully you will find this thread helpful. Let us know how you get on. 💐

Hi all, I’ve been a bit of a lurker on this threat since my diagnosis at the end of April. I’ve just had round 2 of EC chemo on Friday. Over the past few days my bones are aching, I convinced myself these were bone Mets. However, having just spoken to the oncologist, he thinks it’s the injections to boost bone marrow. Has anyone else experienced this?

@Notjustabrunette yes I had lots of bone aches on EC, possibly from the filgrastim, possibly from my immunotherapy (as I noticed it again when I had Pembro only, no injections). Ibuprofen helps, and some people recommend an antihistamine

Yep, @Notjustabrunette I found the aches from filgrastim really painful. I took loratadine - I still take this as it’s supposed to have a protective effect against recurrence. I also did my filgrastim injection later in the day so that the worst of the aches happened overnight.

Hot water bottles helped, as did sitting on my heated blanket. Not easy with the current heat.

Thanks for the loratadine tip, will give it a go.

Another newbie here hoping to join please.

I was diagnosed with BC last week and I’m really struggling with it all.

The lump is about 16mm apparently and not hormone linked. Beyond that, they didn’t tell me anything else. I asked about the specific type and stage of the cancer but the consultant said they would have a better idea after the lumpectomy. I’m now worrying that they know more than they are telling me and it’s really bad. But that is possibly my paranoia and anxiety talking.

I’m having the lumpectomy and sentinel node biopsy on the 5th September. Results will then dictate the next course of action. The results terrify me but what is frightening me the most at this point is the lumpectomy.
I am absolutely petrified of the operation - can anyone who has had a lumpectomy and sentinel node biopsy reassure me please?
I’m scared of the general anaesthetic and not waking up. I’m also terrified of feeling sick afterwards (my mum always suffers really badly with this, plus I had a bad reaction to the medication when I had my c-section when I had my son). I have emetophobia and cannot cope with feeling of being sick. I’m worried that even if I tell the nurses I won’t get the anti sickness medication in time or it won’t work.

I’ll also have a drain afterwards and I’m worried about it getting infected or accidentally pulling on it.

I’ve been told day surgery and even though I don’t want to stay in hospital overnight, I’m worried about being discharged and then feeling ill at home and not knowing what to do. My husband will be there to look after me but he won’t know what to do either. Also, as the operation is on a Friday, what if I have questions or need medical help at the weekend? I don’t know how long I will have the drain in and does it need emptying every day?

I’m so sorry for rambling on. I know my anxiety is spiralling.
I just feel so very scared and vulnerable right now.

Hi @PoptartPoptart so sorry you are here and it is terrifying and scary so be assured you are feeling very normal in the circumstances. When the medics have results for you they will tell you. However until they get the tumour there are unknowns to them so histology after your lumpectomy will tell them the remaining info to make the next stage of treatment plan.

I had SNB and lumpectomy and honestly it was very straightforward. It took about 90 minutes and I did not have any issues with the general even though in the past I have been sick. The nurses will listen and take your worries seriously. When you are discharged you will have a number to call the specialist nurse for any questions or worries you have so there will be support for you when you get home.

hang in there, one day at a time. Xx

@spartanrunnergirl thank you for replying.
I just can’t believe how badly I am coping with it.
I’m usually quite a strong person but this has really knocked me.
I’m worrying over every tiny detail of the operation and that’s not even thinking about the results yet

@spartanrunnergirl I’m literally in the same boat as you, my cancer is not hormone driven either, and I’m having my lumpectomy on 5th Sept and they are taking some of the lymph nodes for a biopsy. I’m not worried about the op as I’ve had one before and been fine, but might be worth contacting the hospital before the op and telling them about your worries? It’s the results of the biopsy that scare me and if they find something and what that will lead too.

Fingers that for both of us our surgery goes well, and the same for the biopsy results xx

@Lovewine1975 thank you for replying and yes, our stories do sound very similar 😢

The day before my surgery I have to go to the nuclear medicine department to be injected with dye and have a sentinel node scan. Apparently they do this sometimes before a lumpectomy (but not always - but think it depends on the hospital).
Is this something you are having too?

Hi new to this thread but had a lumpectomy in April..the blue dye is common.. I had it and you get to enjoy the novelty of blue wee. My operation went fine. I hadn't had a ga for years and was concerned but the people who work on these wards are very used to people being anxious. I woke up after a little bit stoned and honestly couldn't feel a thing. It will be okay

Thanks for your kind words and reassurance @TheAmberStork

Although I’d rather not have to be on this thread at all (and I’m sure everyone else on here feels the same) I feel so thankful that there are all these incredible women who are here to support each other.

Hi OP just did a quick scroll through the thread I think I posted on your original thread back in October but didn’t link to this one. Glad to hear you are now “ on the other side”. It’s a little calmer this side, but I find the yearly mammograms very triggering. Last year I had to chase up my results and after having the mammogram mid October, it was Christmas before I got round to contacting my surgeons secretary. To be honest I was totally distracted by my Dsis’s sudden diagnosis with pancreatic cancer, she rapidly went downhill and died at the end of October. It was tragic, she had survived breast cancer for 22yrs, after diagnosis aged 34, then ended up with a totally unrelated cancer. They even retested her for genetic markers, there is a link, but didn’t have the gene. Just very unlucky. The irony is that if her bc had come back she would probably still be with us.

As a result I now live in the moment. My other DSis recently got married again and I took very few photos, I preferred to enjoy the whole experience rather than viewing it on a screen. It was a tough day though, my DSis asked me to do a reading but although she warned me they would be lighting a candle at the start of the ceremony for my late sister, she didn’t say I would be doing the reading immediately afterwards.

Im now 4 yrs post diagnosis and it does get easier. Unfortunately my boob still reminds me regularly with odd pains and discomfort. I still struggle to wear normal bras. I have successfully lost weight despite menopause and hormone blockers. Although I will be very happy to give up taking the Anastrazole in 12mnths if they are happy for me to stop taking them. I have read that 7 yrs is now seen as optimal but I will see what they advise.

I have noticed that you have reached the pragmatic stage. I find that bc sufferers seem to fall into two camps. Those that move on and back to normalish life and those that seem to wear it like a badge, dye their hair pink and get involved with lots of charity stuff. I think it’s great if that’s what helps but I didn’t want to be the woman/friend who’d had bc. I went to one meeting of our local support group but it was either women who treated like a social group or those who were still undergoing treatment. I just wanted to move on. I belong to a very good Facebook group where you can be much more honest and bravery isn’t encouraged. It was great for advice and post surgery reassurance but I rarely visit it now. Again it can be triggering and for most of us whose treatment is successful longterm it is a bit too much of a reminder that you are never totally out of the woods.

Hopefully, you are pretty much healed physically. I found that the effects of radiotherapy lasted a lot longer than I anticipated, but I no longer have chronic fatigue although the Anastrazole joint and muscle pain frequently interferes with everyday life. Of course it’s invisible, if I overdo things I often struggle going up stairs. But on the whole life is good.

@PoptartPoptartyes I have got the injection the day before, and I heard it turns your wee blue as well! So that shouldn’t be anything to worry about at least 🙂

The drain is a bit of a pain. You empty it when the bag is full. It is usually a vacuum drain so doesn’t have to be below your body.
They may give you a tote bag to carry it around in but I would advise taping a loop of the tube to your chest under your boob so if it catches on anything it does pull on the incision site. Also if you have an old fashioned men’s pyjama top with pockets at waist level, you can wear it inside out and put the drain bottle in the pocket.

You can buy heart shaped pillows online from support charities/sights usually made by volunteers to help post op.

The other bit of advice is that no matter how sore you are start your physio exercises as soon as possible. They really help particularly if you develop cording in your arm or torso. Even after 4 yrs I still occasionally do the stretches. You can develop scaring and fibrosis after surgery and radio so the exercises help to prevent the scaring limiting movement.

The other positive thing is that post surgery you will hopefully be cancer free. Having the tumour removed has a positive psychological effect. Any other treatment, if you are stage 1 or 2 is just insurance.

I had gene testing ( only done for hormone positive), had a low score so chemo would have had little benefit. With hormone negative tumours chemo has more benefits. Throwing everything but the kitchen sink at the cancer gives you the reassurance that you’ve done everything possible. There is very little sound evidence that lifestyle changes or diet are preventative. BC for the vast majority of women is just bad luck, I believe the only modifying factor is alcohol. I have been almost T total for the last 30yrs so I don’t think it was a factor in my bc. I do have an endocrine disorder that slightly increases the risk and I had a late menopause which increases the risk.

I'm so sorry you've had this horribleness to deal with. I am 9 year post diagnosis. I had/still have health anxiety. I found the initial period so difficult. I had a mastectomy- huge lump- 4cm, aged 42. The drain wasn't a big deal. Recovery was very straightforward. It's a quick op. You're only under for a short period of time. I was sitting up watching TV and eating snacks within a few short hours.

Mentally it was much harder. I had only just gone back on antidepressants for my anxiety and was feeling good again, youngest child starting playschool, when all this happened. I leaned heavily on my GP for additional anxiety medication and got counselling at the hospital. Keep the faith 💪

@PoptartPoptart I'm coming up to the first anniversary of my diagnosis. I had a 4 cm Grade 3 invasive ductal carcinoma, triple positive. I had 16 rounds of chemo, then a lumpectomy and SNB. The surgery was way easier to cope with than the chemo! I really didn't have any pain, and the general anaesthetic was fine (I've had a few GAs). Speak to the anaesthetist about nausea and sickness, as they can give you anti-emetics while you're under I think.

And yes, do the exercises post-surgery!