Waiting waiting waiting

Diagnosed with breast cancer
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Hello everyone. I’m new to this forum.

I was diagnosed with invasive lobular breast cancer in my right breast on 27th October after a biopsy taken when attending the clinic with an area of thickness near my nipple. It’s ER8 PR8 HER negative. Nothing showed on my mammogram in April, so it’s come as a huge shock. I don’t drink much, have never smoked and run 5k three times a week. I breast fed both kids. I’m 58.

At first they said the lump was 16mm, and that I’d have surgery and radiotherapy, but the MRI showed it to be 27mm with another small area near to it which they said they’d biopsy. If that’s also cancer, they’ll say that together that makes a 30mm tumour. They also found cancer cells in a lymph node under my arm.

I had a CT scan. I was already terrified, and the prospect of the CT scan made it worse. I was convinced they would find it everywhere. I called for the results several times with no luck, which heightened my anxiety exponentially.

I couldn’t eat or sleep and felt like I’d had all the stuffing knocked out of me. I still do. My GP prescribed me diazepam as I’d lost 4kg in the first two weeks after diagnosis because I couldn’t eat. I’m still so scared.

Anyway, the CT scan was clear, hurrah, though they saw a nodule on my thyroid and something else on my left lung, though I was assured that these are not cancer. I will have to have these investigated though, later I hope.

When I had the biopsy of the second lump they found in my right breast, lurking behind the first lump, I saw the MRI images and could also see the bits in my lymph node glowing away happily, even though I had my arms down by my side when I was scanned.

Waiting for the results of this biopsy delayed things by another week, and I will find out on Monday 27th what is going to happen. It feels SO SLOW. Like they are willing things to get worse while I wait.

I have small boobs, so I am expecting them to suggest a mastectomy. I actually would prefer this to a lumpectomy. I want it all gone so that there is no chance of anything being left behind or as little chance as possible. I am really hoping to avoid chemo, but realistically, I am expecting this to happen. I really want the mastectomy first though. I want it out of my body.

Mentally, I am having ups and downs. I am off the diazepam for now, since getting the CT results I have calmed down a bit. I am exercising and doing yoga and meditation. It has really helped, even though I am a cynical person usually. This process is changing me already. I can eat now too. Always a bonus. Sleeping still isn’t much of a thing though. The middle of the night is not your friend when you have BC, is it?

I have also found Liz O’Riordan’s podcast ‘So Now You Have Breast Cancer’ brilliant. She is an inspiration. A breast cancer surgeon who has had breast cancer. You can find her on Instagram @oriordanliz.

I find myself browsing the BC forums a lot, and I have realised that I must limit this exposure, as it can induce panic again, even though everyone is lovely.

I just want to get on with the bloody treatment now though! Has anyone else had such a complicated drawn out experience?

Karen x

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Hi casey4jc
I am also 58 I went for a routine mammogram at the end of august, called back for further tests on the 7th August, was told I had two suspicious areas so more mammograms, ultra sound and about 6-8 biopsies of the left breast. I then returned on the 13th September to be told one area was benign but the other was a 25mm invasive ductal but the nodes looked okay but with out further biopsies they couldn’t guarantee. I then had to wait four weeks for a lumpectomy and snlb that was done on the 12th October. I then had to wait another four weeks 8th November for those results. That date came where I was told the lump had been removed with clear margins but it was in both the nodes they removed, one macro one micro so I needed another op for a full axillary clearance, which was yesterday, another two weeks. I have now been given an appointment for 20th December yet another 4 weeks for these results, originally I was told a lumpectomy, hormone tablets and 5 days of radiotherapy, I am now guessing I will be having chemo and who knows what else, all I seem to do is wait and no treatment plan happening, I know they need the whole picture but the waiting is intolerable. Sorry to go on I think I’m still drugged from yesterday, but I just wanted to say I understood how you feel about the constant worrying and waiting

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Hi Karen. Blimey that does sound stressful! It was about a month from my diagnosis til I got MRI results and an op date. It must feel unbearable at the moment…good that Monday isn’t far away now and fingers crossed it motors along after that. I had a lumpectomy and was slightly concerned after my op that they took out nearly 6cm nasty stuff and then margins on top of that (15mm invasive and 43mm DCIS) so am amazed there is any boob left…mine were not big to begin with! I empathise with you wanting the mastectomy. Really hope you get it out very soon and can kick on with whatever else is to come. Agree wholeheartedly that Liz O’Riordan is fab! I keep googling her when I get stressed and it helps xxx

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Goodness me, Chill out. Well, it’s not only me then! Thanks for replying :heart: I’m so sorry you’re also having to endure this nightmare.

How are you feeling after the surgeries?

I suspect I’ll also have to have all the nodes removed. I already have a frozen shoulder, which bothers me a bit as I hope they’ll be able to move my arm enough to do it. I hope they do everything at once.

Xxx

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Hi Blue

Thanks for your reply. It sounds like it’s all moving ahead for you now. That’s fab.

Interesting that they still did a lumpectomy even with the small boob situation. I guess you must’ve had to decide what to opt for. How’s it looking?

Tough choices none of us wanted to have to make.

Xxx

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Hi there
It is still a bit bruised and swollen but much better than it was. There is a slight slope indent on oneside but it really isn’t that bad and can’t tell unless you stand and compare. It isn’t visible at all with bra on.

I didn’t have a choice. I really did just want a mastectomy but the surgeons wouldn’t perform it. I have stressed a lot about this but lots of medical advice from 3 different consultants has made me feel a bit happier about it all. Just got to put my trust in them!

X

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Thanks for sharing that Blue. Interesting. I wonder what my team will say.

Good to know that it is healing and that’s good about what you look like in a bra.

Counting the hours until Monday afternoon now.

Have a lovely weekend

xxx

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Hi
The lumpectomy & snlb ops were fine, all went okay and healed quickly. I only had axillary clearance on Thursday and that feels a bit more troublesome, especially with one of the exercises, so just taking them slowly and will talk to the nurse if they don’t improve in a few days. I was going to say I was told initially my lump was 25mm but was 16mm when removed with a local magseed guidance.

Hope your doing okay today
Sending hugs :hugs::hugs:

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Hi,
Similar to you, I have always been ‘fit and health’ but a kidneys infection and sepsis earlier this year caused me to loose over a stone in weight… it was then I notice the changes to my breast.
I had my initial appointment at the breast clinic was on the 28th April, the told me there and then (after 7 hours of various tests) that it was cancer and that I would need a mastectomy- all to be confirmed with biopsy results.
2 weeks later they confirmed ILC- a mass of 80mm - how the hell I didn’t see/feel this earlier I’ll never know….
Because of size my surgeon wanted more biopsy’s (on both breasts) and abdominal scans - more appointments to wait for…
It was so stressful, waiting for appointments to come through… waiting for test results …. I threw myself into work for the distraction!!
I filanlly has my surgery on 13 June - single mastectomy with LD reconstruction.
Final biopsy - PR8/ER8 HER2-.
Had delays to the start of my chemo due to slow healing, backwards and forwards to the hospital for dressing changes.
Started that 18th August. I have been told I’ll neeed radio but as of yet… don’t know how many till I see the Radiologist next month… then will be back to see the oncologist for next steps on hormone therapy.
Again not fully sure what telnet plan is and all the while I’m not working with no idea when I will be in a place to commit to go back properly.
I have found the whole process very much a waiting game…. I like to have a plan so did find this frustrating, however I am learning that you just have to go with the process as long as there are no ‘unreasonable’ waits/delays.
You can find details of NHS nice guidelines on the web… this might give you a better idea of if your running to the appropriate timescales…

Sending big hugs :hugs:

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Thanks for sharing Fabien.

Wow, what a long drawn out process. I’m glad you were able to focus on work. I have no brain space for it, which is unfortunate as I’m self-employed.

Hopefully that will settle once I have my treatment plan tomorrow (I really really hope so).

Looked at the NICE guidelines, thanks.
Freaked myself out a bit though, so had to stop reading. Coming up to the 62 day limit though, within the next week.

Take care x

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Hi @casey4jc

I’m so sorry you’re still waiting - it’s awful. I made the mistake of telling colleagues about my second screening on 15th November 21 thinking that talking would help. It didn’t and I was told at the time that it was almost definitely cancer and went off sick because I couldn’t face questions.

I was formally diagnosed on 22nd Nov and was offered surgery on 9th December but I was lucky enough to be early and low grade and I took up the offered place on a medical trial .This was running regionally but when I was first told about it I wasn’t aware that the trial was not yet open in my Hospital - I was the first one which put my procedure back to the 16th and the communication / pathways hadn’t been sorted out so there were what felt like long periods with no updates / information to the extent that it was touch and go whether I would get it done on 16th either - though I did. I was randomised for VAE under local and radiological guidance which failed - and I was aware it had failed at the time . It was a month wait for my check mammo - to allow the haematoma to subside enough for them to be able to see everything .

My initial results from second screening had come back in one week so I thought the same would happen again but because 2 Radiologists couldn’t agree the films had to go for another opinion before they could confirm what I knew already - that it hadn’t worked and I needed surgery . I was even asked if I would like to wait a few weeks to get over it ! :face_with_symbols_over_mouth:.

It was 10 1/2 weeks between diagnosis and lumpectomy / SNB and 8 weeks after I could have had it done under GA - I try not to have regrets.
I was told that communication had been sorted out for the future participants and I’m glad because there were a couple of times I almost lost my mind and it would have helped to know what was going on . I work for the NHS so I understand the other side of it but unless it’s happened to you or someone you love I don’t think anyone has any idea what it’s like to be a cancer patient and be stuck waiting and worrying and not able to move forward.

Wishing you all the best for tomorrow and for your treatment.

With love
Joanne. X

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Thank you Joanne. Hell on earth!

How are you doing now?

Karen x

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I still have mixed feelings about the choices I made but I’m ok thanks Karen . As well BC I had a shoulder injury but now physically I’m the best I’ve been since before surgery . I am enjoying doing things I was worried I wouldn’t be able to do again - and I wish the same for you and more when you come out the other side of this .

Joanne. X

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That’s great to hear!

I have had frozen shoulders for about 2 years now. They are well on the way to recovery, but the fact that it’s hard to move my right arm above my head properly concerns me for when they have to take the lymph nodes.

More complications.

Roll on this afternoon’s appointment :grimacing:
Xxx

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@casey4jc
I hope you had the good news today
I know the feeling xX

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Wanting the cancer cut out as quickly as possible seems a most natural need. I remember walking in to the surgeon and saying - just cut the breast off. I felt it had let me down. My surgeon at Airedale Hospital was fantastic. She talked me through my options, I felt I could trust her and followed her advice for a lumpectomy. I had my surgery 21 Dec 2022 and I’ve just had my first mammogram -which was clear. It all seems overwhelming now but it does get clearer and there are so many women out there who care and want to give support. x

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Thanks @buds01 and @tabbyc

I’ve opted for a mastectomy and full lymph node clearance on 19th December, though I begged hysterically for an earlier date, or if there’s a cancellation. Still terrified it’ll spread while waiting. By the time I have surgery it’ll be 74 days since I went to my GP. Seems like another lifetime.

They talked about lumpectomy, but that would require further scans and would delay things even further. I’m all consented so I’m ready to go if a cancellation comes up.

‘Happy’ with my decision. Just want it out of me.

So delighted that your mammogram was clear @tabbyc :heart: Fab news.

I really do love the support this forum supplies. Thank you everyone :smiling_face::pray::smiling_face_with_three_hearts::kissing_heart:

Karen

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Fingers crossed you get a cancellation

Sending hugs xx

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Hi Karen

I’m glad you’ve got a plan now though so sorry it’s not as soon as you hoped . I don’t know what you are doing for your shoulders but could you use the time to see if you can get some extra treatment ?

I fell and damaged my rotator cuff 2 weeks before my initial radiotherapy consultation and I was concerned as I didn’t think I would be able to lie with my arms above my head or drive to my appointments but after 2 Osteopathy treatments the range of movement was much better. Under the circumstances perhaps you might be prioritised . I’ve heard of people having treatments through MacMillan as well.

With love
Joanne. X

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@casey4jc
Same experience as my surgery was postponed before because the haematoma from biopsy was quite big, the waiting was killing me. Fingers :crossed_fingers: all will be well for you.
All the best

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