Bilateral breast cancer. Invasive Ductal. Grade 2 on one side. Grade 1 on the other. ER+/PR+. hER2-. Generic Tests negative.
Following double lumpectomies, confirmed that lymph nodes clear, cancer margins are clear BUT additional DCIS area found and margins ARE involved. Same side as Grade 1 cancer. I am mid 40s.
The NHS team deliberated back and forth over 3 weeks. First told that further operation needed. Then final conclusion no further surgery needed and proceed with radiotherapy and tamoxifen.
Decided to pay for private second opinion. Advised that guidelines would state that further surgery IS needed.
Dilemma that my breasts are small and further surgery would mean an excessive amount of my breast tissue gone.
Both doctors said that a masectomy could be something to consider
I am in such turmoil. I have spent days and nights researching. Cannot find anything that is similar to my case. Only research for women with DCIS and whether further surgery is beneficial or not. But not DCIS and grade1/2 invasive cancer
So it sounds like to get a clear margin you’d need a mastectomy?
In my case, I was told if they couldn’t get clear margins I’d need a mastectomy as I also have small breasts. I was fortunate that the first surgery got the 22mm cancer lump and 36mm surrounding DCIS all out, though with only 1mm clear margin on one side. I then had a second surgery to take a tiny bit more out in order to get to a 2mm clear margin, and that tissue was clear of cancer so I didn’t need a mastectomy.
I think in your position, my team would now be saying a mastectomy is needed. I’m sorry it’s not clear for you, there’s been a lot of grey areas around my treatment plan too so I understand how difficult and stressful it can be.
Could you get a second opinion within the NHS? I did that at one point and it really helped
Thank you for taking the time to respond to me. Means a lot.
It is as you’ve described. ‘A grey area’ that’s all consuming me at the moment.
Thank you for sharing your experience. I’m waiting for my oncologist appointment and will get their perspective too
Hello @browneyes11
It sounds like you’ve been given a lot of information but no actual advice on what the best treatment plan would be? I found that sometimes you had to be direct with your surgeon and ask what they would do in your shoes. Some will give you an answer (mine did but I did keep bothering them with questions), but some won’t as it really is a decision you have to make, but you can ask for statistics based on their previous experience. If they are unhelpful, speak to your breast cancer nurse and let them know how you’re feeling, they may be able to help you advocate.
NHS trusts can differ on their advice too, I know some women who had to push for mastectomies, whereas my trust said it really was my own decision and they would support whatever surgery choice I made. There’s a lot to weigh up, and if you are concerned about having a double mastectomy then please do speak to your surgeon about reconstruction options too if this would help you. You can also ask for delayed reconstruction, so that you have time to make an informed decision.
Sorry this is all so vague for you at this stressful time, I know how overwhelming it can be and sometimes you just need a medical professional to tell you what to do. I hope you get the best advice and treatment plan in place as quickly as possible
Thank you for taking the time to respond to me. Really appreciate it. The two views are different from the different doctors. Thanks for sharing that there are differences between trusts too. Makes feel like I’m not completely on my own in this ‘grey area world’
I’ve been told that there are no exact statistics for my individual case. I currently have unclear DCIS margins but I have also had invasive cancer in the same breast removed.
Getting more information about mastectomies with reconstruction and radiotherapy will be helpful - thank you.
Currently there is a backlog. My surgery was early September and still waiting for oncology meeting. I’m taking tamoxifen in the meantime
Every case is different and every doctor is different.
Saying that here is my testimony.
I was diagnosed a year ago.grade 3 invasive DCiS I found myself after having been monitored for 20 years. Had mammo in feb 2024 been told not to worry about what I had felt. In September it was already t3…
Been told chemo before surgery or chemo after surgery doesn’t change anything.
I got a copy of my records and the letter of the oncologist to GP says there is a 10% chance cancer might progress while under chemo. I have never been told this and my husband who was in with me did not hear this either. I remember asking does it change anything… and the answer was no…. 10%… I don’t play with health.
Then after chemo surgeon said tumorectomy. I was nearly disappointed. With my size tumour and breast I had prepared to have my breast chopped off and reconstructed. Asked surgeon are you sure it is not better? No…
3 surgeries after I had to have a 4th one: mastectomy with reconstruction.
I guess my surgeon cared more about my breast than I did alas. It has been 8 months after chemo I started letrozole 2 months ago only insisting as I was on nothing… and now cancer might have spread to lymph nodes on the other side! Yay!!! When I went for DIEP I asked about replacing the other breast too they said no need…
How I wish I had mastectomy + reconstruction after chemo. I get it you have to wait to be healed before they start pouring cytotoxic products in your body so yes. Chemo before or after is the same.
Thank you so much for sharing your story. This has really helped me alot. I can see common traits in how doctors really do try to save your breast as much as possible. I’m just worried about future re-occurrence. I’ve been told that having bilateral cancer in your mid 40s is already only in the 1-3%, so already I feel like - what do the statistics even mean? There was a 99% that I could not get bilateral breast cancer and here I am, going through this…
I had a friend who was found with breast cancer after having given birth. She was in her 30s. Triple negative. She has had a bilateral mastectomy and immediate reconstruction using her inner leg fat (she did not have enough belly fat ).
More than 10 years after her breasts look fantastic and no more worries for her….
I had DCIS and IDC in left breast diagnosed 11 months ago. Had an MRI which revealed the affected area was more extensive so I’d need to have a mastectomy. The MRI scan also showed two areas of concern in right breast. Biopsies confirmed DCIS. Whilst breast conserving surgery was an option for that one my gut reaction was that I wanted it gone too.
Surgeon supportive of my decision. Gave me options of going flat, immediate reconstruction with implants or autologous reconstruction (DIEP). Given I’d had 6 cycles of chemo and targeted therapy first (triple positive), I opted for implants. I didn’t want to be flat and the thought of a very long op and longer recovery from the DIEP surgery didn’t appeal. I’m happy with the decision I made and the result. I had no lymph node involvement and didn’t need radiotherapy.
X
Hello
I also have bilateral, Left sided DCIS and in the right an invasive ductal and DCIS. ER+ and also genetic tests negative.
I also have small breasts so the plan for me was lumpectomy on the left and a mastectomy on the right and lymph nodes on right.
The mastectomy was mandatory as they felt due to my smaller breast and the locations of the 2 areas being closer together it wouldn’t be possible to get clear margins whilst leaving me with enough breast with a lumpectomy.
I had surgery 4 weeks ago and thankfully have been advised clear margins and clear lymph nodes. So no radiotherapy just the hormone blockers for 5 years.
I opted for immediate reconstruction with implant and I’m happy with the results.
Thank you so much for taking the time to message me. This is really helpful to know someone with this experience. Thank you for sharing it with me here
Your case sounds so similar to mine. Thank you for sharing this. So, I had lumpectomies on both. The additional DCIS they found did not have clear margins. The NHS are putting me off having further surgery (which would need to be mastectomy due to breast size). The private is saying that guidelines state that it is ideal to have further surgery, but ultimately it is my decision to make. It’s really left me in turmoil.
I’m really pleased that your happy with the results. Such a difficult decision to make
The mastectomy was on my right, I chose to have just a lumpectomy on the left as it was low grade DCIS and my consultant was confident they would get clear margins.
But they said if I preferred I could have a double mastectomy, at first I thought just get rid of the lot but once I’d researched a little I decided against the double.
It’s such a hard decision to make, not only if to have the mastectomy but then if to have reconstruction and what type.
I made my decision fairly quickly then drove myself crazy worrying if made the wrong chose.
