New breast cancer diagnosis

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.

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

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.

Depending on the hospital, you might be offered a shorter course of radiotherapy. I only had five days, but I believe each "dose" was stronger.

Pammiel after my mom's first mastectomy she was on Tamoxifen for 5 years . She was 73. When she was 86 had second mastectomy couldn't face chemo but had 15 doses of radiotherapy. She lived until she was 90 but it was dementia that killed her not cancer .

My friend who had the lumpcetomy had 15 doses of radiotherapy and on Tamoxifen for 10 years now may be longer she is in her late 40's. Because of the Tamoxifen when she starts the menopause she can't have HRT. She also has fibromyalgia and disc degeneration.

Hope that information helps . Neither my mom or my friend had / have any problems taking the Tamoxifen.

So sorry to read your diagnosis news Pammiel. My daughter had breast cancer last year after a routine mammogram. She was seen by the team very quickly - had the operation within 3 weeks, with radiotherapy weekly for 6 weeks after that. Some lymph nodes were removed from her armpit to be on the safe side. She found that she developed 'cording' in her arm which is being helped by physiotherapy. She is back at work and feeling fine, apart from a little tired - she was warned the radiotherapy can cause that. The NHS were incredible (East Kent) from the beginning. Hope your treatment goes well too.

Thanks ladies, that’s really helpful. I’ve been told that they will only remove one lymph node to biopsy and if no cancer cells are found they won’t remove any more, so fingers crossed. Chemo won’t be of any help to me as the type of cancer doesn’t really respond to it, so hormone therapy and radiotherapy will be included in the treatment plan along with surgery.

Pammiel you will be given excercies to do they help with helping to keep full muscle movement and to help if you Get cording.I didn't find mastectomy painful .I joined forum Breast cancer care and found it helpful .

Pammiel when my mom had her mastectomies they took the lymph nodes. Because of the scar from the lymph nodes removal it did limit how high she could move her arm. When she had the first one my dad was still alive and it meant when they went ballroom and sequence dancing she couldn't put her arm on his shoulder but just above his elbow instead. She had lymphodema ( not spelt correctly can't think how it's spelt ) so she had to wear a tight arm sleeve to push the fluid out of her arm she had to wear it for 2 months. She had exercises to do but they didn't involve moving her arm very high and there where hand exercises she did them 3 times a day.

As you may know the lymph nodes act to remove fluid out of the body. But we have lymph nodes in different places on the body.

When mom had the second op she had the same limitations of her arm did the exercises but no lymphodema. I moved in to look after her for 3 months .

A friend had a lumpcetomy and lymph nodes removed them 5 weeks later had pre cancerous cells removed after having blood test results. She has lymphodema in her breast and has to do exercises on her breast to move the fluid.

If I was in your place I would have a mastectomy and lymph nodes removed and chemo and radiotherapy . I have a hole in the side of my heart which I was born with but only found out in 2020/2021 after an echo,bubble echo and MRI . I have PAF. Had to laugh when my cardiologist told me as I have had 3 major and 2 minor ops with a dicky heart and no one picked it up.

In 2022 finally got diagnosed with my neurological condition and it's rare and has effected my mobility my whole life plus other things. It's hereditary so was born with 2 things .

Finally getting treatment for both conditions. There is no cure for my neurological condition as it's a gene mutation in my brain receptors so it's in my DNA.
I will be 66 on Tuesday.

No idea if this is any help to you . Wish you all the best whatever you decide. But what I would say the quicker you get it done the better. And try and be positive it will help your recovery. 💐

I had mastectomy 16 years ago and opted for a DIEP reconstruction using live tissue from my abdomen. I stayed in hospital until the drains were removed though some are discharged with drains in situ. The breast surgery wasn’t as painful as the abdominal but it was quite manageable. I had physio for a few months to alleviate “cording” as the underarm tendons heal. Chemotherapy was a choice of four months aggressive treatment or seven months with fewer side effects, which is what I chose. Radiotherapy for three weeks, then five years hormone therapy.

I found the forums on Breast Cancer Care absolutely invaluable, so many women going through exactly the same regime, to the same week and even the same day, able to discuss with the bliss of anonymity. It’s worth looking at.

Thank you to everyone who has taken the time to lend their support. It’s good to hear so many people have been through this and come out the other end !!

I have a clinic appointment for 21 May and am still awaiting the MRI appointment. I’ve been told that they’re as sure as they can be from the ultrasound that the cancer has not spread to the lymph nodes, but whatever surgery I end up having will involve them taking the sentinel node for biopsy, as that’s the gold standard and confirm what they already think.

The consultant wasn’t sure about the size of the tumour - they think just under 3cm but he said it felt a little bit bigger on examination, but that with lobular tumours it’s difficult to tell. That’s why they’re doing the MRI, but I’m prepared for more not so good news after that because both the radiographer and the consultant commented that the nipple was inverted on the affected breast. It’s been like that for as long as I can remember and he did say that it could just be normal changes that come with age, but I have a suspicion that part of the reason for the MRI is to make sure there’s nothing else going on that didn’t show up on the mammogram.

So we’ve moved on from being reassured at the first appointment that surgery will likely be a lumpectomy, to the possibility of mastectomy. I have mobility problems due to congenital disability (wheelchair user and elbow crutches indoors) and was diagnosed with rheumatoid arthritis a couple of years ago, and the thought of not being able to mobilise or use the arm on the affected side terrifies me.

They’ve assured me that even if I have mastectomy, assuming no complications I’ll be home the same day or day after, and I have got support at home, but it’s still worrying. Just wondering if anyone with experience of mastectomy can tell me what to expect in terms of pain after the op and any limitations I need to prepare for. They’ve mentioned exercises to make sure that my arm and shoulder don’t stiffen after surgery.

Sending good wishes.

Just to say my sister, who is 66, had her first bc at the age of 30, and another at 32. She has lumpectomies followed by radiotherapy and is fit as a flea.

She managed to keep her sense of humour - when the surgeon cam round to admire his handiwork the next day, when told him she thought it looked like a Cornish pasty!

Pammie1

Hi all. Just posting to release some steam really !! Had a mammogram two weeks ago and got a call back letter on Friday - not specific about why. Went to the clinic yesterday - 3D mammogram, ultrasound and biopsies and then a face to face with the consultant radiographer. Took me through the scans and said that she is 99% sure that we’re looking at a malignant tumour on the right side. Biopsies will confirm, but in the meantime she’s made an appointment for me to see the surgical team on Friday of next week. She’s as sure as she can be that there’s no lymph gland involvement, but again biopsies will confirm, and she passed me on to the breast care nurse to explain what happens next.

Basically they think they’ve caught it at an early stage and they’re hopefully that it can be treated with minimal surgery - possibly vacuum extraction under anaesthetic as a day case. They’re waiting for the biopsies to confirm the type of cancer it is and what treatment it responds to best, before deciding whether to do ‘belt and braces’ treatment before and after surgery with either chemo or radiotherapy. I think what I’m asking is if anyone has had a similar experience, and how it was for you. Thanks in advance.

Hello there,
Yes both ny daughter and I had breast cancer I was 51 and my daughter 27. There by the grace of God both cancer free now.
I swore by aquaphor cream during radio. Yes a bit stains on the t shirts as in greasy but no burns and hardly any colour difference for me.
Neither of our tumours showed up on a mammogram and only the ultrasound, which then resulted in biopsies.
All very quick for me as told me they think it is there and then and to come back the following week. It was then the op and lymph node clearance ( mine had spread ) was 3 weeks later and treatment after that when healed.
All quick and no problems at all.

My daughters was larger and did have problems and needed a mastectomy and she didn't follow advise well at that time. She also struggled with chemo. That said if you spoke to her, she'd say it was because she did everything they said not to.
She does follow advise now thankfully.
Nhs in both circumstances were amazing.
If you want to talk to anyone let me know and I'll give you a ring or you ring me.
I'll shoot a prayer up for you

Pammiel I can only tell you about my mom . She had always had pain in her left breast . GP fobbed her off for years. One time the pain was so bad went to GP luckily it was a locum who sent mom start to rapid access clinic. She had mammogram and they found her left breast was fine but her right breast needed a biopsy. Her cancer was the size of a pea and malignant. She was 73 . It was deep seated and mom had big boobs. So she had a mastcetomy and lymph nodes removed. When she asked my dad what to do dad said I didn't marry you for your tits. They told her after the operation in May 2000 if it had been left she would have been to ill by Christmas to be operated on.
Not telling you this to frightened you but this happened to my mom. She did get an infection but soon cleared up. She was on a tablet beginning with T but can't think how you spell it for 5 years. She had a prosthesis but found it heavy of used some of my dad's socks rolled up to pad her bra out.

When mom was 86 she had bleeding from her left nipple. Again rapid access clinic mammogram and biopsy. This time grade 3 breast cancer. We didn't think they would operate but because mom was fit and healthy apart from osteoporosis and arthritis. They gave her 2 options to have a tablet to shrink the tumour then mastcetomy or mastectomy chemo and radiotherapy. She asked me what to do I said mastectomy straight away. Mom told the consultant she couldn't face chemo she saw my husband having it but would have radiotherapy. So mom had breast and lymph nodes removed only had to stay in hospital overnight because of her age. Otherwise she would have been out the same day.

My husband died in 2004 from grade 4 malignant melanoma he was diagnosed in 2001 and given 5 years he died in 2004 aged 47. Dad died in 2007 . So I moved in with mom for 3 months to look after her. I had fallen out of my old house kitchen door and slammed my ankle on the door ceil just about the ankle bone. And it ulcerated . Both mom and me had open wounds but I made sure neither of us got an infection.

The drain mom had in was easy to empty and clean and only needed it fir 4 days. Mom started radiotherapy on her 87th birthday and had 15 doses.

We where given a list of dos and don'ts. I recently told a friend who had a lumpcetomy all of them in fact brought her a bag full of products to use.

If you have radiotherapy only use Simple shower gel ,face wash, shampoo and conditioner and deodorant. And buy a tub of Ageous cream comes in 500g tubs think it's less than £5 . And once scar is healed use it to keep your skin moisturised especially if you have radiotherapy use before and after treatment. Mom only had a very pale rash like mild sunburn but because of the cream it healed. And she never felt any discomfort from it.

A young woman mom met at her radiotherapy had used body shop shower fresh and got a very bad rash and her treatment had to be stopped until it healed . Then she had to start the whole course over. Hence my saying only use Simple products and the cream.

Mom lived until she was 90 unfortunately it was the dementia that killed her not the cancer.

Mom didn't bother with a bra and used to just wear a soft vest against her skin. The second scars healed quicker than the first. Mom used to have an injection every 3 weeks into her tummy because of the radiotherapy could thin her bones and only had it because of her osteoporosis.

But this is what happened to my mom .

I decided if I ever had breast cancer after my husband died if I would want both boobs removed and lymph nodes and chemo and radiotherapy which every I needed . I haven't got big boobs. I do like my boobs but wouldn't miss them . But that's my view on them . Everyone knows what they can and can't live with.

This is what happened to my mom . Haven't told you you frightened you but hopefully given you hope and but of advice about if you have radiotherapy.

All the best Pammiel.

I can’t give you any personal experiences Pammie1 but you are in very good hands here with the support from the ladies who can. Wishing you all the best with your treatment plan 💐

Hi Pammie ,
I'm sending you Get Well wishes .
Take care ,
Esmay .

Hi Pammie1, I appreciate you posting this update but am sorry for your news. My own diagnosis of bc was shocking, even though I had a family history. I remember feeling just like you're saying, that it was happening to someone else. The hardest time was the waiting to find out the specifics of the cancer so a course of action could be decided. At that point, you have short term and long term goals in front of you and that seemed to give me something to work toward, if that makes sense.
Everyone's journey is different and though it's a club we didn't want to join, a sort of sisterhood does exist.
Have patience with the process and take it one step at a time. Lean into family and friends for support. Breathe, try to find a calm place within you and most of all, rest and take care of yourself. Take the best care of yourself you ever have, it will help you later.
You can do this!

Btw I know a few friends who had breast cancer and are still here after 25+ years to tell the tale. One of my young neighbours (just over 50) had cancer 2 years ago in the right breast, but decided to have a double mastectomy and reconstruction at the same time . She made that decision because she lost her mother through the same and wasn’t going to risk it. She looks lovely and has no problems .

Pammie My cancer was lobular, a bit smaller than yours, but the MRI scan discovered another cancer just behind my nipple. Originally I was told I would have a lumpectomy, then a mastectomy when the second cancer was discovered. I couldn't have a reconstruction because diabetes meant that there was a risk of infection.

I totally freaked out because it just seemed to be going from bad to worse. I hated the idea of being flat and losing my nipple.

Fortunately, I was able to change surgeon to an oncoplastic consultant, who saved my breast and my nipple. My breast is now much smaller than the other one and I'm waiting for breast reduction surgery on the other one.

About 15% of breast cancers are lobular. They don't usually form lumps, which is why they're sometimes not detected in the early stages. Mammograms don't always pick them up, but MRIs do.

I guess the surgery recommendation depends where the cancer is situated and whether your lymph nodes have been affected. It might be possible to ask for a second opinion, if you're not happy. You should certainly ask to discuss reconstruction, if a mastectomy is recommended.

Whatever the outcome, I'm just glad the cancer was caught. The op wasn't too bad (day surgery) and it healed well with almost no pain. Finding a bra which fits is tricky. My breast shrank after radiotherapy, it's hard and I'm only now regaining full feeling (after two years). The hormone blockers have resulted in tiredness and difficulty controlling my weight (which is a first for me).

But after all that, I'm alive and I actually feel healthier than ever. It's normal to worry, so get all the support you can. Treat yourself, if you can. I don't usually spend money on beauty treatments, but I got my nails and eyebrows done just before my op. I thought I might end up with no breast, but I had gorgeous nails and eyebrows - people could look at those instead.

Good luck with it all! I hope you don't have to wait too long.

Haven’t been in your position but sending you love and hugs and hoping all goes well.

Hi everyone. Biopsy confirmed the diagnosis. HER2 negative malignancy and hormone receptive, which is good. Not so good is that the tumour is lobular and near the skin surface, and bigger than they thought -3cm. Surgeon examined me and said it felt slightly bigger than 3cm so not sure if lumpectomy is appropriate. He suggested MRI scan to confirm size and will advise after results. Says that they will always opt for the most conservative treatment as long as it’s safe, but mastectomy may be the best option, followed by hormone treatment. Bit shellshocked but trying to get my head around it. MRI in 7-10 days, clinic appointment in three weeks and appropriate surgery a couple of weeks later.

It feels very much like this is happening to someone else - an out of body experience. Does anyone have any advice as to how to process it all ?

Thinking of you Pammie1 and hoping you're managing ok during this tough time.

This hasn’t happened to me but I’m sending you good luck wishes as you go forward with your treatment

Hope all goes well tomorrow Pammie. I had a small triple negative cancer thirteen years ago so know how you’re feeling. Let us know how you get on.

All the best, been through it myself 💪