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Recall for breast screening

48 replies

Rosscameasdoody · 05/04/2024 11:10

Need a bit of advice. I’m mid sixties. I went for breast screening about ten days ago and have had a recall letter this morning saying that they need more tests before I can be given a result. The additional testing may include breast examination, further mammogram, ultrasound and biopsy. I had difficulty with the screening because I am physically disabled and the awkward angles needed during the mammogram were difficult. There is nothing on the letter to indicate exactly what the problem was, and I’m wondering a) if others here have had a similar experience and if so, what was the outcome, and b) could it be that because of the difficulty they just didn’t get what they needed the first time around. Thanks in advance

OP posts:
Rosscameasdoody · 16/05/2024 18:00

poetryandwine · 15/05/2024 22:15

I will be thinking of you on Tuesday, @Rosscameasdoody If you are up to it, please let us know how it goes. Very best wishes xx

Will do. Am in tears at the moment as so scared but so grateful to everyone who has contributed and made me feel supported. Thank you.

OP posts:
Rosscameasdoody · 16/05/2024 18:01

poetryandwine · 15/05/2024 22:15

I will be thinking of you on Tuesday, @Rosscameasdoody If you are up to it, please let us know how it goes. Very best wishes xx

Will do. I’m very scared after the MRI but feeling bolstered by the support here. Thanks to all who have responded and I’ll update as soon as I know more.

OP posts:
hattie43 · 16/05/2024 18:05

DaftFlerken · 05/04/2024 12:43

yes, I had a recall on my first mammogram. Had a repeat mammogram, ultrasound & biopsy there & then & they added a marker in my breast to show where they had biopsied.

Results of the biopsy where that it was nothing & all perfectly & they now know to ignore on future mammograms due to the wire marker they inserted.

Non of it was painful at all & apparently very common to be called back on your first test

Same as me.

KathieFerrars · 16/05/2024 20:29

Hi @Rosscameasdoody Just wanted to send you good vibes. I am now seven years clear. Had lumpectomy and radiotherapy and been on tamoxifen. Radiotherapy is fine but the fatigue is insane. The lumpectomy is an ok operation. I then had three further ops for margin clearance. The waiting for results is the worst thing. Way worse than the operations.

One of the worst things is peoples' responses to the cancer word. They immediately think you are dying and are going to have chemo. The fear factor is huge and catching so do protect yourself from that because it doesn't help the anxiety. Again, read the bc forums with a degree of caution. As with all forums the people who post tend to be suffering difficulties. You don't know their health, wellbeing, anything so don't assume that the side affects of the hormone therapy, for example, will be the same for you.

Good luck and keep busy to distract yourself but your cancer is doable, survivable and you can do this!

Rosscameasdoody · 17/05/2024 21:07

KathieFerrars · 16/05/2024 20:29

Hi @Rosscameasdoody Just wanted to send you good vibes. I am now seven years clear. Had lumpectomy and radiotherapy and been on tamoxifen. Radiotherapy is fine but the fatigue is insane. The lumpectomy is an ok operation. I then had three further ops for margin clearance. The waiting for results is the worst thing. Way worse than the operations.

One of the worst things is peoples' responses to the cancer word. They immediately think you are dying and are going to have chemo. The fear factor is huge and catching so do protect yourself from that because it doesn't help the anxiety. Again, read the bc forums with a degree of caution. As with all forums the people who post tend to be suffering difficulties. You don't know their health, wellbeing, anything so don't assume that the side affects of the hormone therapy, for example, will be the same for you.

Good luck and keep busy to distract yourself but your cancer is doable, survivable and you can do this!

Thank you so much for this. I’m already finding out that people are thinking this is an automatic death sentence. Two friends have told me they think I’m giving up because I’m ‘refusing chemotherapy’ despite repeating several times that chemo isn’t an option because the cancer doesn’t respond to it. I’ve withdrawn into myself somewhat in the last few days apart from the great support from partner and two close friends who understand what’s going on and are sharing my efforts at optimism.

I’m really grateful to all who have responded with their own experiences and advice. It’s all helpful and reinforces the knowledge that although this is a horrible personal experience, I’m not alone and people have been through it and survived. Thank you from the bottom of my heart to all who have contributed and opened up their experience. I’ll update you as soon as I have any more news.

OP posts:
Rosscameasdoody · 21/05/2024 18:44

Hi Everyone. The consultant wants a CT. The MRI didn’t get any clearer images than the mammogram, but has estimated that the tumour is somewhere between five and ten centimetres. He says there’s a margin of over/under estimation with MRI so we’re progressing to CT for two reasons.

The first is that they’ll get a better idea of the size. Lobular cancers don’t form a lump - the cells form straight paths through the tissues so they tend to be larger, and if breast tissue is dense, both mammogram and MRI don’t give clear images.

The second is that there is a standard procedure to go to CT when the tumour is suspected to be over a certain size. This is to make sure that it hasn’t spread anywhere else, because the pattern of spread with lobular cancers is different. He stressed that they have no reason to suspect that there is any spread, and the lymph nodes appear to be clear, but they need to make sure they’re not missing anything. They’re still treating it as an early stage breast cancer which they think is curable.

So CT will be within two weeks and I have another clinic appointment in three weeks for the results, then they will decide a treatment plan based on the results. I’ve been started on Letrozole and advised that if it’s successful in shrinking the tumour, one treatment option could be to stay on it for three to six months to allow for maximum shrinkage before surgery, so that lumpectomy can be considered.

It’s all very scary and I can’t get the thought out of my head that there’s something they’re not telling me, although common sense tells me that’s not the case. The next three weeks are going to be a difficult wait !!

Thank you to everyone who’s responded and I’ll keep you updated, and in the meantime if anyone has had a similar experience or has any advice to add, your views would be most welcome.

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TinglyandCurious · 21/05/2024 18:51

Hi @Rosscameasdoody Im sorry to hear about your diagnosis and that you’re still in that limbo phase at the moment.

My mum was diagnosed with lobular breast cancer last year. It sounds as though they are being very thorough your end. She had a big tumour at time of diagnosis but hers was very externally obvious (puckering skin, huge patch of thickened skin) but she’d not dared see the GP about it. Despite that she’s responded well to treatment and has managed it well despite being older than you. Cure was mentioned throughout. The fact you couldn’t even feel yours is hopeful that it’s smaller than my mum’s and hopefully less invasive.

Thinking of you x

fourelementary · 06/07/2024 21:51

@Rosscameasdoody I was just wondering how you were doing after finding your post. 🌷

Rosscameasdoody · 09/07/2024 21:29

fourelementary · 06/07/2024 21:51

@Rosscameasdoody I was just wondering how you were doing after finding your post. 🌷

Hi - thanks for your concern. I lost this thread and it only resurfaced after your post bumped it. I had a CT scan to try to get a better idea of the size of the tumour, as lobular cancer is diffuse in the tissues. It confirmed that it’s about 10cm in size. Thankfully it also confirmed that there was no spread anywhere else although two nodules were detected on the left lung but they’re not suspicious for cancer - although they will be monitored.

If I were to have surgery now it would be mastectomy, so I’ve been started on Letrozole to try to shrink the tumour over the next couple of months, so that lumpectomy may be a possibility. The surgeon advised that the tumour is 8/8 responsive to hormone treatment so there’s a good possibility that it may shrink enough for more conservative treatment, although I’m time limiting myself to the next appointment at the end of September - if there is no appreciable reduction at that point I’ll opt for mastectomy to be safe.

Thank you so much for your interest. I’m booked in for an MRI to track progress in August, so I’ll update after that.xxx

OP posts:
BeatsAntique · 26/09/2024 01:06

How are you doing, @Rosscameasdoody? 🩷

Rosscameasdoody · 27/09/2024 22:05

BeatsAntique · 26/09/2024 01:06

How are you doing, @Rosscameasdoody? 🩷

Thank you so much for asking @BeatsAntique. I’m going for an MRI on Monday. Have been on Letrozole since April to try to shrink the tumour and I went to see the consultant a couple of weeks ago. It seems the treatment has been very successful and the tumour is significantly smaller.

The MRI is to determine whether it’s shrunk enough to allow lumpectomy rather than the more radical mastectomy. I see the consultant again on 8th October when they have the scan results, and we’ll discuss the next stage. The options include mastectomy if the tumour hasn’t shrunk enough, or he may suggest another couple of months on Letrozole to see if they can make any further headway. The last time I spoke to the consultant he was keen on the Letrozole treatment as the biopsy results indicated the tumour is almost 100% responsive to it, so he may opt to extend treatment time.

Mentally, I feel much better now - the initial shock has worn off and treatment seems to be going well. I’m in very good hands, and although I know there are no guarantees with cancer, the treatment team seem to be very confident that the prognosis is good.

Thank you for your concern, and I’ll update again after I’ve seen the consultant.

OP posts:
Rosscameasdoody · 24/10/2024 21:28

Just a quick update. Went for an MRI two weeks ago and had the follow up appointment on monday. The tumour has shrunk to a third of its original size and I’m on the list for a lumpectomy and lymph node biopsy in the next 4-6 weeks, followed by radiotherapy.Consultant says there is a one in five chance that further surgery may be necessary to clear margins because it was a large tumour, and depending on biopsy results further lymph node removal may be needed, but we’ll cross those bridges as we come to them. For now, the letrozole treatment has been very successful so things are looking a bit brighter.

OP posts:
BeatsAntique · 24/10/2024 22:36

Sounds like things are looking good! Hope you’re feeling well and able to keep your mind on happier things.

poetryandwine · 25/10/2024 12:57

Great news, OP. Very best wishes

Rosscameasdoody · 14/11/2024 18:24

Quick update. Went for surgery yesterday. The letrozole had shrunk the tumour to under 3cm so had a wide margin lumpectomy, together with 3 lymph nodes removed for biopsy. Home the same day and although quite sore, pain is manageable. I had quite a lot of tissue removed so hopefully nothing left behind, but all goes for biopsy. Results on 2 December and if all clear will be six weeks of radiotherapy to follow. Going back to dressing clinic next Tuesday to check the wound and change the dressing.

All in all the experience was much better than l anticipated and pain levels are much less than l expected. Will check in again when l get the results back. Thanks to all for your support.

OP posts:
PolliFlinders · 14/11/2024 18:34

Just wanted to wish you well. Will be thinking of you.

poetryandwine · 14/11/2024 18:35

Thank you for updating us, OP.

I am so glad that the letrozole shrank your tumour so effectively, and that your pain is manageable. Fingers crossed regarding those lymph nodes now!

Very best wishes

Striongbutnotstrong · 21/11/2024 18:58

I have been for a recall mammogram today and after 10 worry fuelled days since receiving the letter I’ve had a mammogram ultrasound and biopsy and markers put in. It’s not a lump I’ve found myself and very small but I do have a history of fibroidandenoma . I’m thinking it’s what I don’t want and the nurse at the end said if it is it’s very early and treatable . I have results in two weeks so another agonising wait. I’ve been told a hospital appointment will be made in that time too which doesn’t sound good but I’m trying to stay positive .

poetryandwine · 21/11/2024 22:17

Striongbutnotstrong · 21/11/2024 18:58

I have been for a recall mammogram today and after 10 worry fuelled days since receiving the letter I’ve had a mammogram ultrasound and biopsy and markers put in. It’s not a lump I’ve found myself and very small but I do have a history of fibroidandenoma . I’m thinking it’s what I don’t want and the nurse at the end said if it is it’s very early and treatable . I have results in two weeks so another agonising wait. I’ve been told a hospital appointment will be made in that time too which doesn’t sound good but I’m trying to stay positive .

I am so sorry, @Striongbutnotstrong . The wait won’t be easy. But the nurse is right. In the worst case, which is far from confirmed, early breast cancer has excellent outcomes. Usually (but not always) the treatment does not even require chemo.

Please keep us informed, and come back any time you need a hand hold - we can be here for you while you wait for results. Very best wishes

Rosscameasdoody · 23/11/2024 01:06

Striongbutnotstrong · 21/11/2024 18:58

I have been for a recall mammogram today and after 10 worry fuelled days since receiving the letter I’ve had a mammogram ultrasound and biopsy and markers put in. It’s not a lump I’ve found myself and very small but I do have a history of fibroidandenoma . I’m thinking it’s what I don’t want and the nurse at the end said if it is it’s very early and treatable . I have results in two weeks so another agonising wait. I’ve been told a hospital appointment will be made in that time too which doesn’t sound good but I’m trying to stay positive .

Similar to my own diagnosis pathway. The hospital appointment isn’t a cause for concern - you need that for your results to be notified whatever the outcome. Did they confirm that it’s likely cancer ? They did with me. Once l’d had the mammogram, ultrasound, and biopsy and the marker inserted the radiologist showed me the mammogram on which l’d had the recall and said that she was 99% certain that what she was looking at was lobular breast cancer at a very early stage. She was right. Like you, l was unaware of any lumps or bumps beforehand. If you’ve been told it’s very early that’s good - mine was and cure was mentioned throughout.

You’ll be assigned a consultant and at your appointment they will advise the biopsy results. If cancer is diagnosed they will know from the biopsy what type, what grade (how aggressive) and what type of treatment it responds to. If they know the size of the tumour they will stage it, but you may need MRI or CT if the size is not clear.

l’ll use myself as an example of what you might expect - obviously may differ according to the type of cancer diagnosed, but gives you a general idea. I was diagnosed with lobular cancer which doesn’t form lumps, but follows straight paths through the tissues. It was difficult to stage as lobular doesn’t show up well on mammogram but MRI gave an impression of a 8-10cm tumour - lobular tumours tend to be bigger on diagnosis but it was still an early one. Because it was over 8cm l had a CT to make sure there were no other tumours anywhere else in the body - that came back clear and l was diagnosed with early stage invasive lobular cancer, grade 2 (fairly slow growing so not hugely aggressive) and at stage 3, which in my case was because the tumor was larger on diagnosis but hadn’t spread beyond the breast.

I was told that the tumour was responsive to hormone therapy but not to chemo, so l underwent six months of treatment with Letrozole which succeeded in shrinking the tumour to under 4cm and a week ago l had a wide margin resection and removal of the tumour (lumpectomy) and removal of three lymph nodes, including the one nearest the tumour (sentinel node). All of the tissue removed will be biopsied to make sure there are no cancer cells left behind or spread to the lymph nodes. If anything is found they will do another surgery to clear them. That will be followed by a course of radiotherapy as a ‘belt and braces’ treatment.

The surgery itself was fine. I was only in hospital for a day - home late afternoon. Quite a lot of tissue was removed but although quite sore for a couple of days it was nowhere near as painful or debilitating as l had anticipated. I was up and around the following day with a dressing on the wound and instructions not to use soap or deodorant when l shower. Bruising was extensive but the visit to the dressing clinic yesterday showed good healing and no infection - dissolving stitches thankfully. Now dressing free and told to wear a well fitting soft bra and take it easy and carefully until the wound is fully healed. Back at the hospital for results next week, which will determine what comes next.

It’s a very scary thing to have someone tell you you have cancer. You think it’s something that happens to other people and it’s a shock to realise you have it because it introduces an element of uncertainty that wasn’t there before. But you do eventually get your head round it and it becomes easier to accept. My own cancer journey has been relatively straightforward and I do hope the same is true for you. There have been lots of advances in treatments and cures are now possible where they weren’t before. The worst part is waiting for test results, so I know how you must be feeling now. Try to be encouraged by the fact that they’ve said the lump is small - early cancers have an excellent cure rate. I wish you well - come back and let us know how you’re doing, and if you want to talk privately please feel free to PM me.

OP posts:
Rosscameasdoody · 19/12/2024 05:13

Hi everyone. Quick update. I went for biopsy results last. Tuesday and the news wasn’t what l’d hoped for. The tumour was still quite extensive and there were cells in the ties shavings taken from the margins. They also found cancer in one of the three lymph nodes taken for biopsy.

The surgeon recommended mastectomy and clearance of the remaining lymph nodes as the safest option and that’s what happened yesterday (18 December). I was very lucky in that he had a surgery list less than a week later so decided to go for that to get it out of the way before Christmas.

the surgery was fine - in theatre at 8.30am and home by 4.30pm. I had pain blocking jabs after surgery and the are still working, although advised they will wear off slowly over about 48 hours and then on conventional painkillers.

All in all, not too bad an experience. Back to hospital Friday for drain removal and then next tuesday for dressing check. Biopsy results on 14 January will determine if chemo is necessary in addition to the radiotherapy l’ve already been advised of.

Thanks again for your support and l’ll update again after biopsy results.

OP posts:
poetryandwine · 19/12/2024 07:07

I am very sorry to hear the medical side of this I remember being scared when pathology showed that DH had some lymph involvement even after pre-operative chemo. But (as I said earlier) here we are, years later, all fine so far.

But glad the op was a success!

You are doing everything right and I am hopeful for you. Do please share as much as you would like to. Very best wishes.

PolliFlinders · 22/12/2024 15:15

Wishing you all the best.

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