Breast cancer surgery - advice please

[JingleJum]

I have just been diagnosed with breast cancer, DCIS, low/medium grade. They have arranged for me to have surgery next week and want me to think about whether I have breast conserving surgery or a mastectomy.

They are waiting on MRI results but think they may have to take out a fair bit of tissue. I have small breasts so I'm wondering what I will be left with?!

I've had children and done with breastfeeding so am wondering if a mastectomy would be the best option. The consultant said it is an option and to think about it.

I also have anxiety and what worries me is that the cancer didn't show up on the mammogram or ultrasound, it just looked like benign cysts so I first got checked a year ago and they said it was fine. It was only because I was still worried about the lumps a year later they did a biopsy. So if they leave breast tissue after the surgery how will I know if it comes back?

I would really appreciate any views on the pros/cons of the two options, and particularly how it will affect my mental health if they do the breast conserving surgery and I end up worrying all the time about the cancer coming back. It's not like I can get a biopsy every few months!

Also will the biopsy have made the cancer spread if it opened up the duct?

Hi i had invasive ductal carcinoma last year. Like you my tumour was 5cms big and i have quite small breasts. All the benefits of lumpectomy were sold to me and i went ahead with it. Mistake. I now have 1 D cup boob and 1 A cup boob. All thats left in my little boob is hard, painfull scar tissue. It hurts all the time and looks awful. Im niw attending breast and Odema clinics to help with the pain. The lumpectomy is still pretty major surgery, my breast nurse told me that although theres only a small scar on the outside, inside its mangled like a train wreck. Apparently theres last chance of the cancer coming back with a lumpectomy and radiotherapy, but as im such high risk of it re occuring im about to have my ovaries out to protect me, so more surgery :(. Its obvs your choice, but if i had the choice again, knowing what I know now, I would go for masectomy in a heartbeat.

Thank you that's helpful to know. How was the radiation therapy? I'm quite scared of that. Also worried about needing repeat surgery if they find they didn't get it all the first time. I feel that my mental health would be much better after a mastectomy as there is less chance of it recurring. I haven't seen anywhere that lumpectomy and radiation has less chance of recurrence?

I have just had a lumpectomy and radiotherapy. Mine was grade one and small. I think in your position I would have opted for a mastectomy. Whatever you decide please be reassured that you will receive excellent care. I cannot praise the NHS enough, I have been under the care of 4 different hospitals due to covid and all of them have been brilliant. Radiotherapy was fine, what is it in particular you are scared of? I also have not heard or read anywhere that lumpectomy and radiotherapy has less chance of recurrence. It's a scary time but I found once I had made decisions and had a treatment plan in place I had something to focus on and it was easier. The waiting is the hardest bit. Good luck.

Thanks, I'm lucky enough to have health insurance and the hospital has been really quick and efficient with everything.

I guess I'm just worried about whether radiation can damage other areas of the body e.g. the heart is just behind the breast. With small breasts would they have to get closer to my chest etc?

My cancer wasn't picked up by mammogram or ultrasound, only by biopsy, so I'm worried that if breast tissue is left it could also turn cancerous without any symptoms. Surely not having any breast tissue would mean your chances of breast cancer are 99% reduced as opposed to having breast tissue that could turn cancerous. I'm only 40 so potentially have another 40/50 years in which it could return.

I also have had pain in both breasts so I'm worried that it is in the other breast as well, or is growing really slowly and undetectable as yet. I will find out more after MRI but not sure if even MRI can detect 100% of cancers?

If it is left side then you hold your breath for the radiation. This moves your heart away from the chest wall. The radiotherapists were very good at explaining everything and practicing with the breath hold until they were happy it was suitable. The treatment is very precise. You will go for a planning appt where they take all sorts of measurements on the radiotherapy table then that is set at those measurements for each treatment.

I’m so sorry about your diagnosis JingleJum.
I had a double mastectomy about two months ago due to genetic high risk of breast cancer and a questionable breast lump (benign thankfully). I decided to ‘go flat’, no recon, just the straight mastectomy and I in no way regret that decision. Despite being told that most women do choose recon, the surgeon, nurses and breast nurses were very supportive of my decision. The women on the cancer thread here were all amazing too.

The recovery has been relatively easy (nerve pain for the first 6 weeks but none now) and although I know cancer can still form in the chest area I now worry far less as all the breast tissue they could possibly get was taken.

Ovaries are next on the list to be tackled.

Good luck with it all and I’m happy to answer any questions if you need.

Thank you. How long did your surgery take and how long was the recovery?

I spoke to my breast care nurse today and they now seem strongly in favour of a lumpectomy and then if the pathology looks at all worrying from what they take out I could have a mastectomy then.

I'm just not sure how I will be able to live with the constant anxiety of keeping the breast tissue as I have a lot of painful breast cysts and it's so hard to know whether a lump needs investigating or not. I get pain on and off throughout the day and night so it's a constant reminder something is wrong with my breasts. And it's not reassuring when the scans didn't even pick it up.

Do you wear prosthetics? Do they look and feel realistic? Would you mind sharing why you didn't want reconstruction?

Sorry to hear your news.
My first symptom was pain, then I found a lump.
I had IDC and had a lumpectomy and senntinal node biopsy.
Like you I have very small breasts and the lump was tiny. After surgery it was given as 7mm although particulary aggressive. It had not spread to lymph nodes.

I would happily have had a mastectomy, double even but the surgeon was adamant that the outcome would be the same. She also said that a full mastectomy was no guarantee against recurrance.
I had to have chemo and radiotherapy. Chemo was tough but radio was very straightforward. As PP said you have to hold your breath fopr a count of 25 which lifts your ribcage away from the heart. You are left with an area of skin around the breast that must be protected from sunlight but otherwise I have had no ill effects.

MRI will pick up everything.
Everyone with BC has different experiences. #
I recommend a book called Ticking Off Breast Cancer

Thank you that's really helpful. I'm confused by them saying that mastectomy doesn't prevent recurrence. Isn't that why people with a genetic predisposition have a double mastectomy? I don't understand how the recurrence could be the same with breast conserving surgery and mastectomy.

Yes it puzzled me, she said she would do a mastectomy if I really wanted, but I decided to trust her recommendation,
You will have a discussion with the surgeon and they will explain all options.

I think they say that because there is a small amount of tissue left behind, but I’m told that my risk is now down to 1%.
Like you, I couldn’t deal with the constant anxiety which is why I chose the double mastectomy. I had three months before surgery living with a lump that no one knew if it was cancer or not, and because of the position they couldn’t do a biopsy before surgery. So I was told. I did end up getting a second opinion and they did do the biopsy a few weeks before surgery, but I never want to go through that anxiety again.

I decided against recon for a few reasons. I’m a single mum with high needs children and wanted the fasted recovery possible. I didn’t want what is essentially two surgeries (taking tissue from stomach). Much longer recovery with a high risk of needing further surgery. I also didn’t want to make it harder to feel any lumps that might develop in the area later on.

Surgery took around 2-3 hours. The recovery was the hardest part for me, not so much because of pain but I had bad reactions to the painkillers, so was in hospital four days longer than anticipated.
Two months on I’m having some issues with scarring from where the drain tubes (the actual mastectomy scars are fine) were but over all I’m about 90% recovered. The first month was the hardest because of nerve pain and scar pain but that’s settled right down now. Not everyone gets the nerve pain.

No, I don’t wear prosthetics, I’m happy flat. I was small breasted so it hasn’t made a huge difference in that way.

It’s such an individual decision and there is no right or wrong. It has to be what you and your treating team are happy with.

Thank you for sharing, it's really helpful to hear others' thought processes.

Once you've had one cancer does it make you more likely to have another one? My consultant said no but I'm sure I've read elsewhere that it does.

Hi. Sorry you're going through this. I was diagnosed with early breast cancer 16 months ago. It was tiny, only 1.7mm, and only showed on a routine mammogram, and was hidden within a larger patch of DCIS. No lymph node involvement - my surgeon said I had 'breast cancer lite' 😡

I was offered a therapeutic reduction and lift, I think because my breasts were a 34G. I was also offered a lumpectomy like you, but my surgeon said it wouldn't have as good an aesthetic result. A mastectomy wasn't even mentioned, strangely?

I chose the reduction and lift owed by radiotherapy 4 weeks after surgery. The surgery was fine and recovery was easy. Initially I also found the RT to be easy, but a few months after treatment I suffered with almost constant nasty twinges and niggles in the affected breast, and often it was downright painful. It's only in the last 3 months that everything has settled down and I'm now comfortable and able to wear underwired bras again.

I have spent the last year with one very perky, teenage-like 34D boob and one droopy, middle-aged 34G boob, which hasn't been great. But I'm scheduled to have surgery on my other boob to make me symmetrical this Summer (should have been last July, but Covid......).

Hi, sorry to hear this.
I was diagnosed with DCIS almost three years ago at aged 27. Mine was a large area so I opted for a double mastectomy and immediate reconstruction.
I in no way regret my decision and my new boobs are fantastic if I do say so myself!
Even though it was only one I couldn't have lived with the constant fear so decided to just go ahead and get it done.

So I had a lumpectomy exactly four years ago. My boob looked pretty good despite no nipple. The lymph node surgery was more painful in terms of aftermath. I was in a cafe the next day. Driving ten days later. Lump - went BUT one margin wasn't clear so month later had a second surgery. Then a third. I knew the third hadn't worked and so decided for a mastectomy BUT the margin was 0.7 of a mm and as my husband and surgeon said I'd kick myself if I got rid for such a tiny amount. So fourth time lucky. I told surgeon to ice cream scoop it and do whatever and she did. I somewhat lost the lovely shape she had made and it is smaller than the other nork but not too noticeably. I had more pain after this surgery as she'd obviously attacked and I think there is now loads of scar tissue in there.

Radiation is fine. Honestly you spend most of the time lying on a bed being moved mm by mm to the right place. The actual radio lasts 90 secs. It makes you tired after about a week but if you take tumeric, use medi honey and aveeno cream your skin will be fine. Drink loads of water. Really, honestly, radio was no biggy.

Good luck. Unless you are very small of nork, then I would go for the lumpectomy. It was quick to recover from. I flew out on holiday two days after op number 3!!! You get mammos every year and also put on hormone treatment such as tamoxifen. Again, that's been ok too.

Well I have ended up with no choice after all as the MRI showed extensive DCIS. Going to go for single mastectomy for now and then can opt for a double further down the line if I want to.

Feeling kind of relieved the choice was made for me but am worried that it might have spread as I've had symptoms for nearly a year but as the mammogram and ultrasound were clear they reassured me it wasn't cancer a year ago. Turns out this kind of cancer doesn't show up on those scans, which is worrying.

They are going to take out the sentinel lymph node as well. Going to be a long nail-biting wait for those results.

I'm also likely to have tamoxifen. Had a quick Google which terrified me with talk of increased risk of stroke, endometrial cancer and something else I can't remember now. Also said your hair can fall out and get facial hair etc. Doesn't sound great!

Ive only one symptom from tamo and it is very mild. I really urge caution when reading stuff on forums. Posters are more likely to have side effects, you don't know their size, weight, exercise regime, health, age, lifestyle, etc. I remember being really worried when I read the letrozole side effects and felt like I was taking a bomb!

Sorry to hear about the extent of DCIS but it sounds like you have a good treatment plan going forward. The wait for results is hellish. I can recommend vildea stress spray.

Thank you that's reassuring about tamoxifen side effects. You're right that looking online isn't always helpful and you hear about the worst cases. Still concerned about statistical risks of strokes etc. I'll just have to wait and see what the oncologist recommends once we have all the results.

There is a UK based breast cancer Facebook group. Called Uk breast cancer support. Thousands of women with BC. It has it's faults but I found it useful because even the most obscure question will find someone with personal experience. (Avoid US sites as their treatment protocols differ).

Sorry you are going through this JingleJum. I am in my early 40s and was diagnosed with stage 1 BC last summer and had a lumpectomy and radiation. Waiting for results and treatment is the worst. I was a mess between diagnosis and having my op and found it hard to eat or sleep. This improved dramatically once it was out of me.

I'm now on tamoxifen and have very few side effects from that. Before I started the tamoxifen I was terrified about taking it because of what I'd read online. I agree with what LostArcher has said about the forums. I think people who are not having side effects aren't on them talking about their lack of side effects!

I hope you don't have to wait too long for your surgery and wish you all the best with it.

Hi everyone. Diagnosed with DCIS in April 2021. Had lumpectomy and radiotherapy. Breast still swollen and hard. Seeing consultant beginning May. Anyone else with symptoms. Have a lovely day. Thanks😊