Hi, I have stage 2 grade 3 breast cancer (Er+ Pr+ Her2-) 1/3 lymph nodes showing cancer. I had one surgery already, but now they say the whole breast has to go and more lymph nodes taken too.
I have 3 choices
Mastectomy
Mastectomy+ implant 4 weeks wait away
Diep 8 weeks wait.
I am so scared. I don’t know how to decide. I feel like I don’t know enough and I can’t gauge what the priority is. I am frightened of it being in my lymph nodes and spreading fast, so the safest thing would be the quickest - mastectomy and go flat?
I am 42 mum of 3 children.
I just want to feel safe.
Please let me know if anyone has any insight or experience of similar diagnosis and choices. I am so overwhelmed.
Hi Suffolk, I’m so sorry to hear what you’re going through, and can absolutely relate to how overwhelmed you feel. I was diagnosed with lobular breast cancer in 2022 and was given similar options to you.
I opted to go for the very safest option, which was a full mastectomy because I was frightened that something would be missed or I’d have to go back if clear margins not achieved. I also opted for an immediate implant.
I was thankful I’d had the mastectomy because afterwards the surgeon told me there was a small area that hadn’t been seen on the scans. One sentinel nod3 was positive so I had to go back later for lymph clearance.
Eighteen months on, I’m doing well and have my life back. My only regret is having the implant. I have a bit of capsular contraction and might have it removed.
I’ve read a lot of posts on this site about reconstruction and they seem to vary quite a lot.
I would try to speak to your surgeon again, I remember feeling overwhelmed and a bit rushed too but it’s important you talk to the surgeon and understand the choices.
I hope this helps, and you will probably feel a lot better when you’ve had the op. All the best xx
Hi Suffolk.
I had my masectomy 3 years ago. I wanted the Diep but the scan showed my veins were too small, so i opted for an implant.
A year later my implant was changed due to capsular contracture. Another year on and it has occured again.
I have had another Ct scan for the Diep. For this to be successful i asked what else i could do; be more hydrated and be warm (i did both)and i am now waiting for a date as the veins showed they were ok.
This is a longer healing time and a longer wait for you, but they reassured me its a 95% success rate.
How would you feel being flat one side do you think?
Maybe a delayed reconstruction? (as already suggested)
I’m not sure what the success rate of implants are, but it wasn’t helped with radiotherapy.
Write down all the pros and cons for you.
Good luck
As you have positive lymph nodes you will need radiotherapy and that can affect an implant. I didn’t think it would be offered at this stage.
Diep is a very big operation with 6 weeks recovery at least.
Is LD flap not an option?
Thank you very much for your replies, it’s really kind of you all. I have been offered a mastectomy and delayed reconstruction but the surgeon said this could have up to a 2 year waiting list.
I am so glad you have your life back jan4, that is really reassuring to hear. I am worried about implants and the complications caused by radiotherapy as Rainyday7 says and if it will feel very uncomfortable every day.
I feel worried about going flat and just looking so unlike myself and if it will really get me down, but I like the idea of recovering quick and being free to get on with life again.
I haven’t been offered an LD flap so I can ask about that.
But mostly I am worried about waiting and if grade 3 means I am too much at risk. I find it so hard to think clearly at the same time as being worried what is happening in my body. I see my surgeon again next week and can talk again. Did anybody else have grade 3 and wait 8 weeks for mastectomy, was it safe?
I will do a pros and cons list like you said Jackb.
My head is so full.
I’m so sorry you are facing that. I was in a similar circumstance 16 years ago. Had a lumpectomy with awful histology and needed a mastectomy/node clearance. I made the choice to move fast and had an immediate mastectomy. I felt it would be easier to check for any local recurrence as time went on, and less surgery to recover from. I have never regretted the decision in the slightest (though I was in my 50’s so a bit older).
10years later I got a second primary in the other breast and this time I declined the lumpectomy and had an immediate mastectomy.
The prostheses are absolutely excellent. They come in different weights and materials You can even get tailor-made ones now (at a cost). i can be any size I want to be
It’s a difficult decision but hopefully you will realise the right way forward for you. Good luck
Eily
Welcome to the forum suffolk42 . You could ring the nurses on the Breast Cancer Now helpline to have a chat about this , they are very helpful and re-assuring and may be able to answer some of your questions about waiting time and recovery.
I hope you come to a decision you feel happy with . Best wishes Jill
I had a grade 3. No one wanted me to wait eight weeks for surgery. They are aggressive and can make some headway in that time. I did wait almost five weeks to surgery though. No spread that they could officially detect then but it did end up being a much bigger lump than they thought. Did it grow in that time or did they just underestimate due to my large, dense breasts? Dunno but I was glad to get it out. Considering it’s in your lymph nodes I’ll be blunt. I’d take the nearest surgery date and then go for reconstruction later. That’s what I did and quite honestly I didn’t mind being flat at all. So much so that I almost changed my mind with reconstruction but did end up going through with it. I’m happy with the results but being flat wasn’t so bad. I got to wear some clothes and make fashion choices I never could before and enjoyed that part immensely.
Thank you for the positive story about mastectomy and prothesis Eily. I have been considering this a lot today. It just feels the safest option. I am going to make some calls tomorrow to help me make the decision and I will call the helpline you gave Jill1998, thank you.
Your story is exactly what worries me Kay0987. My specialist breast nurse says I wouldn’t be offered the Diep if it wasn’t safe, but I just feel like I can’t trust the situation because it changed from stage 1 grade 2 to stage 2 grade 3. Thank you for all your replies, I really appreciate it.
Sorry to hear of your news! It’s always tough to get your head around things.
Personally, I had a bilateral mx with sentinel node and reconstruction with implant and mesh (to make it look natural). It was a very good experience and very reassuring to wake up with the recon done and the wait isn’t too long for this option but I hear where you are coming from.
There was lots about Diep online and very little about implant but it’s a much less recovery time and I was back in bikinis in no time and also back in work in six weeks. Plastic surgeons these days are very skilled.
I don’t think I would be going for the diep option with the wait. Are they doing axillary clearance too? Having experienced a recurrence, I would listen to your surgeon and ask which is the best for you to prevent recurrence. It’s a lot to consider but once you have a plan I think you will feel a lot better.
Hi, I had the same diagnosis (grade 3 breast cancer (Er+ Pr+ Her2-)), mine was lobular bc, without the lymph node involvement. I was offered the same choices. I was ‘sold’ the implant as an easy option. However, after some very strange proposed methods that made me panic (a long story) and researching it, I decided to go flat, safe in the knowledge that if I couldn’t live with it I could have reconstruction later. I am so glad that I did that, to my surprise I have no issues with it at all. Flat is definitely the safest and shortest operation and if, later on, you don’t think you can live with it you can decide on a reconstruction when you are in a much better frame of mind with plenty of relaxed time to do your research and make your choices. Remember, at your age, the need to replace implants after a while may be an issue. Personally, I don’t think they should offer immediate reconstruction because, as your post shows, it puts pressure on us to make a massive decision when we are not in the right frame of mind to be making it. I wish you all the best with whatever you choose xx
Dear Suffolk42, Only just seen your post so you may have already come to a decision but this was my experience… I had grade 3 tumour and opted for mastectomy flat closure. I had to wait 8 weeks post chemo for the surgery. I was afraid i would not be able to handle it mentally but i can honestly say that it was far less traumatic than losing my hair. I now have an nhs prosthesis which, when in my bra, cant even be seen. It even feels rather comforting. I have no regrets about my decision. Take a look at Flat Friends for lots of positive stories. I wish you well. Love Tulip xxx
Dear suffolk42, further to my last post I forgot to add that, during the time I waited for my mastectomy, lympho vascular invasion set in so the delay has increased my already high risk of recurrence. X
Welcome to the forum, as you can see we are all here for you. This a a big decision for you, taking one day at a time, I can remember being in this position myself, as Jill has said calling the nurses on this site would give you some reassurance, also your consultant and breast cancer nurse at your hospital are there for you, however so much to take in at one appointment, make note and getting answers is the way forward.
Wishing you well, going forward, please come back and let us know how you getting along, health and happiness going forward.
Hi hun its a hard decision because you have to live with that decision. I chose to have a masectomy because i was offered radiotherapy as a last resort. I had two surgeries neither one was within the marker and so it was a radiotherapy and hope for the best or a masectomy. Most of my breast had gone. I cried fortunately my daughter was with me as a support. I left my husband in the waiting room because he would have got himself in a state. No one can tell you what to do hun, but i pray you will make the right decision for you and your family. Lots of prayers and hugs:pray:
I was in a similar situation last year (39 years old). I wasn’t given much choice, but if I had, I would have wanted to get it out as soon as possible. You might need more treatment, and you wouldn’t want anything delaying it. You can have reconstruction later. I have actually decided to stay flat, but I know I can change my mind in the future. Good luck! <3
I too was grade 3, er/pr pos and her2 neg idc and dcis. With multicentric tumours I just wanted the lot gone asap. Offered immediate implant but advised that radiotherapy will screw it up so will need replacing.
I’ve just had #5 of 6 chemo. Radiotherapy will follow, then I can take my time to research and think about whether to have reconstruction and what type. Having lived flat on 1 side for 5 months I’ve got used to it, but it has been over winter when lots of clothing layers hide the fact. It took a while for me to feel comfortable about not bothering with a foob at home, but I don’t even think about it when I pop out now. Again, not sure how I’ll feel when it’s t-shirt weather.
Sometimes I just ask myself who feels more uncomfortable if my appearance isn’t symmetrical in the chest. Who would actually notice, and would their opinion matter to me?
Probably just me having a rebellious moment. With everything I’ve been through I’m entitled x
I had a different diagnosis, but I had mastectomy and just went flat, and I personally like it, i don’t mind it at all.
Sorry about what you are going through, sending you much love!!
Hi, I don’t know if this allowed but this is a link to yesterday’s podcast between Dr Liz O’Riordan and Anushka Chaudry, both breast cancer surgeons, and there is a discussion about societal responses to going flat and why we shouldn’t worry about them which you may find interesting. If you don’t do Apple Podcasts I think it’s on Spotify. Just a suggestion.
hun its a hard decision because you have to live with that decision. I chose to have a masectomy because i was offered radiotherapy as a last resort. I had two surgeries neither one was within the marker and so it was a radiotherapy and hope for the best or a masectomy. Most of my breast had gone. I cried 
fortunately my daughter was with me as a support. I left my husband in the waiting room because he would have got himself in a state. No one can tell you what to do hun, but i pray you will make the right decision for you and your family. Lots of prayers and hugs:pray: