Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

[LemonDrizzle10]

Shiny new thread.

@Catunderling @Tilllly I take steroids for 3 days and can take them all in the morning. They have said to expect poor sleep with the treatment I’m having but just got 2 days left then I have a week off next week.

Ah right

So just get your teeth and get through it? Or you could blitz the kitchen and bathroom

Steroid-fuelled cleaning is a good call. Though I think I'd prefer the roid-shopping I've read about on here.

I've had a call from the surgeon to say my pathology results are back and that they're sending my tumour to a lab in San Francisco for further analysis as it may respond better to chemo. I was originally told it was hormone receptive so this was a bit of a surprise.

I've got an appointment tomorrow so will be able to find out more but has anyone heard of this lab analysis?

For the first time Ive really felt fear after this news. Up until now the diagnosis and treatment has followed a similar path to friends who have had treatment and recovered. Had a bad evening yesterday but better today. Also had a job interview yesterday and was painfully aware of how much I am not on good form to work.

@HellonHeels - that sounds like oncotype testing? This is routinely carried out in the NHS for BC tumours where the potential benefit of chemo is borderline, to give them more information about the biology of the tumour. They don't do it if they already know your risk is higher and chemo is definitely necessary, as it's very expensive, so they only do it if the potential benefit is a bit unclear. So it's a good thing to have the testing - nothing to panic about. It doesn't mean it's not hormone receptive, as lots of hormone receptive tumours need chemo. It's hard when you hear endlessly about people who had easier treatment routes - and they are in the majority. But it's do-able.

@dotty2 thank you so much for this info and being a voice of reason, Im so grateful to you!

So, had chemo 8 out of 12 today and my appointment with the breast operation team is on the 9th April at a different hospital.
Not sure yet if I will need lumpectomy or mastectomy.
Loads of questions.
For my treatment I've had chemo before the operation-this seems quite unusual?
Radiation after op may be needed to zap everything left.
Should I ask for mastectomy/ double mastectomy?
Lumpectomy sounds a bit hit and miss.
Really floundering here.
Anyone had a similar situation?
Worried about being lopsided if one breast removed or lumpectomy.
Worried that if they only take 1 breast/ lumpectomy I could get cancer in the other one as a secondary.
Anyone faced similar issues?

Hello @Zoopet
Your treatment is quite standard for certain types and sizes of breast cancer. I had neoadjuvant treatment for both my cancers ( before surgery) as they can a. See how well it worked and b. Do a smaller operation if the tumour has shrunk away or disappeared as my first one did.
Whether to have a lumpectomy or mastectomy may be decided by the surgeon if the tumour is large or spread throughout the breast. If it is contained to a small area then a lumpectomy will give a neat result, not lopsided . The risk of recurrence is the same with both operations.
It is rare to get a double mastectomy in the UK unless you have a BRACA gene.
I had a second cancer in the opposite breast two years later but it was a new primary of a different type not a secondary. I’m just special!
Hope that helps. Ask the surgeon what they recommend and why.

@HellonHeels what @dotty2 said. For ER+ HER2-negative breast cancers that have a good prognosis but maybe need some chemo because for example they are higher grade etc the NHS do the Oncotype test which is carried out in the States.

This is really common, not in the slightest bit unusual, plus, if they're doing that then you have a less aggressive cancer with better prognosis than nearly all other types of breast cancer except low grade ER+ HER2-neg (so I mean better than HER2-positive, or Basal, or metaplastic etc) . To sum up, it's not bad news! Even if you do need chemo, you won't need as much as Her2 positive or triple negative patients do because it must be equivocal from the biopsy whether it's even necessary. keep us updated! x

@Zoopet To answer your questions:

No, not unusual at all to have chemo before surgery. This is normal for many if not most HER2+ and Triple Negative patients. I had chemo before surgery myself (HER2+++, hormone negative). What's your subtype?

If your other breast hasn't got any cancer then there's no medical need to remove it AFAIK generally, unless there is a specific reason in your case such as a positive genetic test. I had a full mastectomy on one side, my other breast was clear of cancer and was left alone. I will get annual mammograms on the remaining breast. I was negative for the three genetic tests they did, although my subtype of breast cancer is an oncogene.

Are your MDT / oncologist / surgeon not advising you what they think you need in the way of lump / full mastectomy? Mine did, they said full mastectomy and full lymph node clearance. I followed their advice. It'd be very stressful to decide as a patient without their specialist advice - I hope they discuss it with you soon and you feel happy with what they think is the best plan.

After a mastectomy it does leave the body lopsided, but the NHS provide a free weighted silicone prosthetic breast to put inside a mastectomy bra. Unfortunately, I can't wear low cut tops any more, which means almost all my formal wear is useless now and other clothes too. I didn't have a reconstruction, so if you have that this problem wouldn't happen.

Regarding a secondary in the other breast, maybe ask your team what the chances of that are? Secondaries in my type HER2 hormone negative are most often in the brain, CNS, liver and lungs, but possible in loads of places. I am personally happy I've still got the other breast, but someone else on this thread had much larger breasts and felt the unevenness would be too extreme - I'm 34DD.

Keep us updated x

Oh and if you decide to have a lumpectomy you will almost certainly get radiotherapy to the breast afterwards whereas with a mastectomy it may not be needed.

Thank you @SummerCycling I really appreciate the time you and @dotty2 have taken to set out that info so clearly.

Hello, I’ve been lurking on your lovely threads for 2 weeks, since my unexpected biopsy came back positive for bc.
They seem to think that it is early days, but I’ve had a MRI and have an axilla ultrasound coming up to see if it’s anywhere else.
If it’s just in my left breast then it might just be a case of lumpectomy and radiotherapy?
So I’m torn between feeling shocked about the cancer, but lucky that it should be really treatable.
And honestly a bit of a fraud as others on here are much worse off than me.
The uncertainty is hard, but trying to think positively and not worry too much.

Sorry that you’re here @Nomorebear and please don’t feel a fraud. It’s a really scary time. I’m part way through my treatment (radio & chemo) and everyone on here has said that the initial bit is probably the worst time when you don’t know the extent of it and don’t have a plan.
This thread is so supportive so lurk/post/rant away as you need.

Welcome @Nomorebear . The rules here include NO GOOGLING! The safest sites to look at without frightening yourself are the Breast Cancer Now one and the Macmillan Cancer Support one. You will soon realise that there are many types of breast cancer. Your treatment will be tailored to your circumstances. If your cancer is aggressive ie Grade 3 and if it is either triple positive or triple negative you are highly likely to get chemotherapy. If none of that applies then you will be more likely to get a lumpectomy and radiotherapy but it all depends! Have you been told whether it is ER or PR +? and is it HER2 +? these are the receptors that determine different types of tumour and hence treatment.
Nobody on here is a fraud. Cancer is terrifying in any degree. You will feel better once you have a treatment plan. Sending calmness and peace xx
Top

TopOfTheCliff · Today 22:15
i definitely agree with no googling, Iv googled and terrified myself. Won’t be doing it again. Cancers scary enough without reading dr Google. Xx

Thank you for your support guys.
I had a major wobble after hearing a dear friend newly diagnosed is having a double mastectomy in 3 weeks.
I did the unforgiveable and used Dr. Google.( I know I shouldn't have.)
Will wait sensibly for my appointment and go armed with questions.
Love and strength to all on this thread.

Hi ladies, my Mum recently went for a routine mammogram and was called in for further tests. She had a 3D mammogram and then an ultrasound where the lump could still be seen. They consequently took two samples for biopsy. At the end of the appointment I asked the consultant radiologist if there’s any possibility that this is benign or should we be preparing for worse. I’m extremely grateful that she asked how honest we wanted her to be, before saying she thinks it’s a small breast cancer that needs to be removed and then Mum will have some treatment. She did us a huge kindness by sharing this, having been through a cancer diagnosis and treatment with Dad we found the waiting for a plan so difficult.

It came out in conversation with the breast care nurse afterwards that they think the lump is only 5mm and Mum’s lymph nodes look clear. The plan would be surgery to remove it, samples taken of the lymph nodes to confirm no spread at this operation, followed by 5 days of radiotherapy.

I hope I’m not being insensitive to others on here by saying we’re all absolutely blindsided. My Mum is still working FT. My little DD is the light of her life and I know she is eagerly looking forward to retirement in a few years and spending more time with the family. Now we’re in the throes of uncertainty and contemplating horrible outcomes.

Trying to be positive. We don’t have any family experience of breast cancer, so are clueless about it, but trying not to reach for Dr Google. Feeling all the predictable emotions of anger, why Mum, if it had to be then why when she’s still young? Not rational, I know.

@GodspeedJune sorry to hear about your mum. Nobody is prepared for a diagnosis of cancer at any age and it isn’t fair, it is just random fate. You could say “why not her?”. We all have families and jobs and things we would rather be doing!
Look at the Breast Cancer Now website and the Macmillan Cancer Support page as they are well written and less scary than the wild reaches of the internet.
This thread is for patients, so either get your mum to log on for herself, or take a look at the support thread for families here:
https://www.mumsnet.com/talk/life_limiting_illness/4729740-the-storm-part-3

@GodspeedJune
Also sorry to hear about your mum.
As @TopOfTheCliff said, no one is prepared for a cancer diagnosis at any stage of life and it is a huge shock!

You will find that thread quite supportive I think.

Get a notebook, take it to all your appointments and write everything down. There will be so much information, it will be worth its weight in gold.

Will do this. Thanks. X

Can I wait here with you whilst tests and results loom?? I had a stem cell transplant almost 3 years ago for a rare blood cancer. Recovery has not been easy but I was back enjoying life had just started to let myself look forward a bit. Then wham my bloods have taken a tumble. It could be a medication I was on which they have stopped but more likely it's back. Have the dreaded the bone marrow biopsy next week and more bloods to see where we are at. It is going to be a long week, I have decided not to say anything to my young adult children until there is a definite result and a plan. This limbo period is awful so solidarity to others on this thread also waiting.

Oh @Alittlewornout the waiting is without doubt, the worst part of any of this cancer malarkey

You pull up a comfy chair, grab a glass of wine and hunker down with us

Thanks for the kind words.

Feeling a bit deflated today after my lymph node ultrasound ended with another biopsy. I was hoping it hadn’t spread. Fingers crossed they can get the results sorted before I’m back to the team for the treatment plan on Thursday. Think it will be a long week.

Ive got invasive lobular carcinoma, which is hormone positive. I’m sure there are abbreviations I should be using when I get the hang of the jargon. I know it’s a ‘good’ one to get.

I’m steering well clear of Dr Google. Nothing good will come from it.

@Alittlewornout the waiting is tough! I’m finding keeping busy has been distracting me well, but some days I just feel meh.

I've come to share happy...and totally not cancer related...news!

I'm going to be a cat mum 🥰 Kittens born today! I think we'll have two & they'll be indoor cats. I'm just about to look at insurance for them now, and then kitten things on pets at home, and then carriers to get them about. Dd2 jokingly mentioned leads to take them on walks too...