New breast cancer diagnosis

Tamoxifen won't be offered to post-menopausal women. They are offered Letrozole or Anastrozole. I didn't get on with Letrozole, so I now take Exemestane, which works slightly differently, but seems to suit me much better.

I was also told that chemo wouldn't have any effect. I think it's something to do with lobular cancer.

My daughter found the pain from the lymph node removal worse than that from the mastectomy, Pammie.
She was a tough little thing, but found the exercises painful, even though they were just wriggling her fingers type "exercises".

Saying this, someone I know has just had a mastectomy and had no drains, hardly any pain, and felt pretty good straight afterwards. (She is early 80s)

I suppose each op is different, as well as each tumour.

Hi Pammie - do make sure that you do the exercises. I had lymphoedema in my right arm after a mastectomy and lymph node removal on the right side. I was very worried as I'm right-handed.

My husband had the good idea of putting a yellow sticky note on the kitchen wall with my "good" arm (my left arm) as high up as I could reach, and this gave me the benchmark to aim for with my "bad" arm.

The hospital showed him how to do lymphatic massage on that arm and across my upper chest and back, and we regularly stuck to the hospital's suggestions.

I was committed to doing the reaching-up exercises against the kitchen wall to restore mobility to my right arm, and this was successful. My arms were both normal and fine after a year or so. It might have been less than that, but I have been cancer-free since 1998 so it's hard to remember exactly.

I had to wear a compression sleeve a few times, and definitely when flying anywhere for about 5 or 6 years afterwards.

My mastectomy was my 2nd lot of breast cancer in the same breast. The first time I had a lumpectomy and 35 sessions of radiotherapy, but it came back after nearly 5 years. After the mastectomy and removal of lymph nodes, I took Tamoxifen for a couple of years, then changed to Arimidex because of side effects, then after another year or so, changed to Toremefine, then finally back to Tamoxifen again - all in all, I took the drugs for about 4.5 years.

Good luck Pammie

Quick update. I went for an MRI scan today as the consultant wanted a better idea of the size of the tumour before deciding what surgery is appropriate. It’s lobular breast cancer and apparently they’re notoriously difficult to size from the mammogram as they don’t form a traditional ‘lump’ as such, but a thickening of the tissues.

On physical exam the consultant thought it was a bit bigger than they first thought, and advised that up to 5cm a lumpectomy followed by radiotherapy is feasible and then I’ll be on hormone treatment for life. If the tumour is in excess of 5cm mastectomy is the preferred surgery as that’s the only option which allows for the margin of healthy tissue, but there would be no need for radiotherapy and hormone treatment would only be for five years.

I was a bit concerned because the MRI scan was of both breasts, when the cancer has only been detected in one. The radiographer explained that MRI is the gold standard so while I’m in the scanner it’s appropriate to re check everything as ‘belt and braces’. Hopefully they won’t find anything else, but it’s a scary prospect. Clinic appointment is next Tuesday, 21st May, so I’ll update again when I have the MRI results. Thank you to everyone who has responded - I feel much better knowing I’m not alone.

Thanks for the update, Pammie.

That's the first step done with, then.
At least you will know for sure next week exactly what the plan is to be.
I hope the results are what you're hoping for.

Presumably a smaller tumour?

All best wishes for next Tuesday, Pammie. [cup of tea]

It's good to see your update Pammie, you've been on my mind. Best to you going forward.

Very best wishes for the best possible outcome of it all.

An MRI will do the whole of your body if they set the scanner to do that, they can check all is ok in other areas. They won’t just scan the affected breast.

I went for a CT scan for my lung problem and it gave a summary of the state of all of my organs from my neck down to my thighs. Useful to have, not all good news but better to know IMO.

Hope all goes well for you next week.

I hope Tuesday brings some reassurance, Pammie.

Just wanted to add my good wishes too. X

Thanks everyone. Good to have your support. Will. Let you know how it goes on Tuesday. Hopefully will be within parameters for lumpectomy. Fingers crossed.

Hi Pammiel

I replied earlier but thanks for the updates!

I had a mastectomy 12 years ago and have full movement in my arm. It is so long ago sometimes I forget I even had cancer.

Hope things will go as smoothly for you.

Good morning Pammie, I think today is your next appointment day. Letting you know I’m thinking about you & wishing you good luck. Trust your medical team; you’ll soon be on the other side of all this 💐

Morning Pammie1 Hope your appointment is going well today.

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.

Sounds like they're being very thorough and thoughtful. Sorry it's such a worrying hang on for you. Fingers crossed the meds make a big difference.

Following an MRI 2/3 weeks ago (for another reason) a shadow in my left breast was found. So last week I had a consultation and yesterday a mammogram followed by biopsies. Now I'm waiting for the next consultation to tell me about it and what the treatment will be.

I was lucky - the rheumatologist who asked for the MRI called me the day he received the results and I saw him that day. By the time I arrived at his dept he had already made the appointment to see the gynae surgeon.

I shall re-read this item after I've got my results. A quick read of the pages has shown that you are positive which is very helpful.

Dinahmo at least they found it quickly and got the ball rolling . You have a very good rheumatologist and he has your best interests at heart.

It's no use saying don't worry because you are . But you are being taken care of and hopefully you get an appointment very soon. 🌹

Dinahmo

Following an MRI 2/3 weeks ago (for another reason) a shadow in my left breast was found. So last week I had a consultation and yesterday a mammogram followed by biopsies. Now I'm waiting for the next consultation to tell me about it and what the treatment will be.

I was lucky - the rheumatologist who asked for the MRI called me the day he received the results and I saw him that day. By the time I arrived at his dept he had already made the appointment to see the gynae surgeon.

I shall re-read this item after I've got my results. A quick read of the pages has shown that you are positive which is very helpful.

When the consultant gave me the MRI results he said the tumour did show on the scan but didn’t give any clearer idea of the size. He also said that both cancerous and benign tumours show up, although further testing is necessary to confirm.

My cancer showed up on a routine mammogram and apparently I was quite lucky as it’s a lobular cancer which doesn’t form lumps, but tends to run in straight lines through the tissue and doesn’t always show up on mammogram. On the call back I had a 3D mammogram followed by a biopsy, but the difference was that the consultant radiographer was sure what she was looking at in my case, so I came away from the appointment knowing I had cancer, and the follow up appointments have been focused on finding out the grade, type and size - and it’s the sizing they’re finding difficult, hence the CT scan, and also to check that there is no spread because although they still think it’s an early stage cancer, it’s quite large, as lobular tumours tend to be on diagnosis, and they need to make sure no cells have broken away and travelled to other body parts.

What I’ve taken away from each appointment is the positivity with which they are treating this. The consultant and breast care nurses are on the ball and are reassuring me that they know more about breast cancer than ever before and there are various treatment options once all testing has been done.

It’s a nerve racking time waiting for results, and I’m sending you a virtual hand hold, and hoping that it turns out to be benign for you. Let us know how you get on.

Thank you for your kind words. There is a lot of support on here.

I'm glad we can support people through these times.
I know it helped me when I was really not well.
I don't know how I would have coped at different times.

The wait for results is awful. I really hope that both of you get good news and that you get through this as quickly and painlessly as possible.

I see you have lots of replies. Just want to wish you well. I was diagnosed with stage 3 grade 3 breast cancer 20 years ago. Mastectomy , chemotherapy and radiotherapy followed not great but certainly doable. A year later I underwent a free tram flap reconstructio. Monitored for 5 years ut now a distant memory.