Hi all, I’m 29 and I was diagnosed in May with ER+ PR+, HER2- invasive ductal carcinoma and started on chemo, 16 rounds (EC, than Paclitaxol). I had genetic testing and convinced myself that I likely had a mutation which would mean I would be recommended a double mastectomy. However, my genetic testing has come back negative and I now need to make a decision on whether I have a double or single mastectomy, or a lumpectomy (followed by radiation). I’m really struggling with this decision, my surgeon has recommended lumpectomy but I am worried about a local recurrence or the risk of getting another primary breast cancer. Also concerned I’d be constantly checking the other breast and worry myself. How do people make such a big decision? Does anyone have advice either way? I understand it’s a very personal choice I’m just struggling with what’s best for me at the moment
Hi @Jess_1
I’m sorry to hear what you’re going through and it is not a surprise you feel unsure about what is best.
The forum is full of wonderful, supportive people so I am sure someone will be able to share their experience with you.
In the meantime please do know that our nurses are always here to talk things through - over the phone 0808 800 6000; through the Ask our Nurses your questions section of the forum or over email Ask our Nurses | Breast Cancer Now.
Sending our love,
Lucy
Yeah. It’s a crap decision to make and I’m so sorry you have to make it. The good news is that each decision is equal as far as a long term prognosis goes. So you can put those feelings of concerns away. In saying that it’s worth reiterating that a double mastectomy does not lessen your chances of a distance recurrence since a lot of people think that. It does lessen your chances slightly of a regional recurrence. It also will rid you of having to get yearly mammograms. Some people find that concerning and others find it comforting. I was in the latter group so much so that I couldn’t wait to get rid of my natural breasts. I hated them by the time I was diagnosed and never wanted to see a mammogram machine again as long as I lived. So my natural boobs are gone and I’ve never regretted the decision. I had a reconstruction surgery commonly called a diep and am pleased with my results. However, I will never have full sensation again and that is most certainly a change. A change that at your age might not be worth it. So there you go. You’ve got to know yourself and weigh the risks versus rewards of whatever you choose to do. And remember, neither surgery gives you a benefit as far as long term survival so it’s truly which one you think you can live with the most. Many hugs sent your way as you decide.
Hi @Jess_1
I’m still in the early stages of chemo before I can have surgery so my options are depending completely on how my chemo goes. I have been told that if chemo goes well then I can have a lumpectomy and come back for a mastectomy once my body has “recovered” from chemo. My previous hospital didn’t offer this, but I transferred care and my new hospital has offered this. My surgeon has said that based on my age (32) he would recommend a mastectomy purely as a preventative measure (again only if the chemo goes well…) but he would be happy to revisit this once I’m in a better position to have the more harsh surgery if I opt for the lumpectomy. I think recovery times are something to take into account, I’ve heard the mastectomy is doable but it’s still a very big surgery. If you have care and support in place then that would probably help your decision? Can your surgeon talk you through what other people tend to opt for in this situation and why? Or if you’re able to have the lumpectomy and then go for a mastectomy if you change your mind, what would the waiting times be like?
Best of luck with your decision! I hope it goes well with whatever you choose 
Hi,
I was diagnosed when I was 40. I had primary cancers in both breasts. Initially they said I needed left side mastectomy and 3 lumps removed for the right. I had 3 young children and my mind set was, that I needed to be here for them. I asked about bilateral mastectomy and at first they refused. So I asked for an appointment with another consultant for a second opinion. This consultant got it approved for me to have the surgery. I had diep reconstruction after my treatment finished. Ive never regretted my decision and I felt that it helped me with worrying less about reoccurrence. I’m now 12 years since diagnosis. All I would say is make the decision that is right for you and dont let anyone influence what you decide. Best wishes Jane x
Hi,
Like you I was diagnosed at 29 and was convinced my genetic testing was going to come back positive but like you, it came back negative! I’m Her 2 positive so had chemo first which thankfully shrunk my tumour so I was able to go for a lumpectomy and then radiation. To be honest my surgeon didn’t initially present anything other than a lumpectomy as an option but when I questioned it etc she said medically a mastectomy didn’t reduce my chances of a reoccurrence and it wasn’t what she would advise. She also said the chemo had done such a good job at shrinking it that it would be such shame to waste that 
Obviously everyone is totally different and has to make their own decision but for me I’m glad I went for the lumpectomy. With having had chemo first I was completely exhausted physically and mentally and I think I really would have struggled with the recovery from a mastectomy. I also totally underestimated how challenging I found the changes to my body even though it was a lumpectomy not a mastectomy so for me personally it was the right decision.
I’ve just had my first mammogram and while I was dreading it I think it will get a little bit easier each year.
The only advice I would give you is the advice a nurse gave me at the start of this journey- to make a decision and not look back on it. Any decision you make will be the right one as you did the best you could with the info available.
Best wishes,
Hi Jess it’s a lot to process and trying to figure out what to do when given options is a lot. Do also think about if you’d rather get all surgery over in one go rather than having multiple ops, don’t know if immediate reconstruction has been mentioned or offered to you? It’s just another thing to consider 
Shi xx
It’s such a big decision- and you are so young
Sorry you have to face that
But in a way some good news
-there is no genetic mutation and a lumpectomy is possible.
I am old, 66 and was offered the choice of mastectomy or lumpectomy
Recurrence is a worry, but I had a (nonmedical !)
idea that if another lump appeared after lumpectomy,
there would be enough tissue left for the surgeon to go again!
Somehow this irrational thought allowed me to cope with the diagnosis much better, so I had the lumpectomy
A year in and feel OK with that decision.
Good luck.
I had a lumpectomy in 2016. At first I worried about recurrence a lot. Now I do monthly self checks and I’m only anxious when I go for my annual mammogram. I have very sensitive nipples and want to keep them! I’m a member of a local Dragon Boat Team which is a Cancer Support Group. Most of us are older women some are survivors and others are cancer supporters. Those paddlers have made me less anxious about a recurrence. Some have had multiple recurrences and other female cancers. They just keep fighting. I plan to keep both breasts as long as possible and I keep doing as much as I can for as long as I can. Good Luck.
Hi lucy
Sorry you are going through this and must feel overwhelming at times. Lumpectomy and radiotherapy has as good outcomes as mastectomy for your cancerous breast so if this is what you need then a good choice if you decide thats what you can manage. Very unusual to have double mastectomy if you are not a gene carrier and most surgeons are reluctant to remove a healthy breast. This does not lessen your risk of a distant recurrence but obviously your mental health will play a large part in your recovery. Please remember there is plenty of support out there either online, telephone or if you have a maggies centre near you. Your breast nurse should also be able to support your decisions so speak to them.
Hi Jess.
I was diagnosed last April at 24.
3.5cm tumour in my right breast. ER PR positive.
HER Negative 2 node positive.
I myself felt the same, I didnt want to have the fear of another lump I already suffered with anxiety so it was a no brainer for me so I opted for a right mastectomy.
Once I found out the cancer had spread to two nodes It was either continue the start of freezing some eggs or chemo.
Chemo it was.
I was not given the option of a double mastectomy at the time of my first masectomy as my consultant wanted my BRCA gene test results but I had already made the decision that I wanted preventive surgery with or without the gene.
Luckly even though I do not have the gene because of my age the Dr doing my gene testing wrote a letter of recommendation to my consultant in favour of the surgery so in November 2022 I had the left mastectomy and right axillary node clearance.
I also decided against reconstruction as I had such a terrible time healing from both surgeries infection and seromas which really made things difficult for me. I didnt want to go through another surgery unless it was really needed.
Its really thinking about what YOU want. Not the consultants or oncologist.
Yeah there’s all this data and research but its about whats right for you.
My consultant would ask me everytime we had an appointment together if I was sure about not having reconstruction even when I came to sign the consent forms for the left preventive mastectomy he had the plastics team on standby in the next room even though every appointment I expressed my feelings about it to him.
You do what feels right for you and no one else.
Maybe if it makes it easier write a list of pros and cons?
But for me I just knew I didnt want my breasts if they were trying to kill me.
I hope whatever you do, you heal well and kick cancers butt.
Wishing you all the best
Sending all the love
- Kirstie
Hi everyone,
I wanted to say thank you to each of you for your advice and personal perspectives. I wanted to post an update incase anyone wanted to know what decision I made in the end. I had a lumpectomy yesterday, in the end I went with what the surgeon thought would be best for me as well as listening to others like yourselves who have had to make the decision. I found it difficult to channel in to my gut instinct but now it’s done I feel at peace with my decision. Having a lumpectomy means I will need radiotherapy, which I likely wouldn’t have needed if I chose a mastectomy - it’s swings and roundabouts with whatever decision you make!
Hope you are all doing well, sending my best wishes to you all xx
Jess thank you for updating us glad you are at peace with your choice take it steady now post op and I used sticky dots that I could put up door frame to check my exercise progress each day sending much Shi xx
For rads do drink plenty of water, I found that helped with fatigue some creams that have been used for rads are moo goo, aveno, e45, dr organics aloe Vera and tea tree gel, you’ll find one that suits you get a vest top to wear too so no bra rubbing anything during rads Shi xx