A change of treatment: from lumpectomy to mastectomy in one fell swoop

Hi Yorkshirelass,I am not surprised you feel a bit shocked snd down, that's a lot to take in. I've not had this experience myself but I have been through chemo and radiotherapy and managed reasonably well, better than I had feared.  I hope you have good support around you and the right advice to reach a decision about the next stage of your treatment.  Best fo luck 

Hi I was diagnosed with grade 1 ductal no lymph node involvement HER2 neg 9mm before lumpectomy, after lumpectomy it was 21mm grade 2 lobular with 2 lymph nodes positive with DCIS and LCIS. The surgeon told me that things often change after surgery as they get to look at the tissue under a microscope, but like you I was completely shell shocked and very low, it takes quite a while to get your head around it, but you do start to feel a little better, I was told I also needed all my lymph nodes removed, so I had more surgery in September. 

Sending hugs xx

Hi I had a lumpectomy in april and went for my review expecting just radiotherapy as had been discussed before. I was told instead of 4mm plus 6mm invasive cancer there was also DCIS so the total sizes were 30mm and 45mm!! A bit different! And I didn't have clear margins so needed a mastectomy.  And because I was HER2 positive needed chemo plus phsego injections. . I was so shall shocked and terrified (I'm a single mum to young twins). But I've survived so far (,have last chemo on Monday then phesgo injections until next November) and you will too! X 

Hi Yorkshirelass9, it must be very overwhelming. Its difficult enough waiting for the results and now you find that your treatment plan has significantly changed, must make it even more overwhelming.  The positive is that they have found out this at the beginning and can now give you all the required targeted treatments to deal with the cancer and you have choices on how you proceed forward.  I have just had a left mastectomy and so far so good, I had chemo first to shrink the tumours and then mastectomy without reconstruction and will continue Herceptin for HER2+ and start radiotherapy in January. It’s a lot but so far it’s been doable. After my mastectomy I had the surgical stockings on for 8 hours, they are awful things but as I was up and moving about was less of a concern. I would make a list of all my concerns and request an appointment with the oncologist and surgeon, maybe they can also have the endocrinologist join the meeting take a family member or a good friend who can support you during the meeting. I ticked off my questions as they were answered and I got real comfort in the structure from this meeting. Of course many questions don’t bring concrete answers but I knew roughly what to expect and also what may happen if chemo didn’t go as planned, possibly a change in regime or wait till mastectomy pathology is back to decide next steps, and this happened to me and the answer wasn’t clear cut but we decided to continue chemo abd then do mastectomy. 
Take your time to make your decision, get all the information you can and then take it one step at a time. Each step is a bit further forward and you go the route you want to take xx 

Thinking of you x

 

Hi Yorkshirelass9,

I too originally had a lumpectomy on my left breast, then my results came back, i now had stage 3 and not stage 2 cancer, my nodes removed were clear. So then i had to choose between a breast reduction so they remove more tissue or a mastectomy, i was floored and could barely speak through my tears, i had three people in the room looking at me like i knew what i wanted to do next. I'll tell you what got me to my decision, i wrote a pro's and con's list and mastectomy won. I am 55 and like you probably won't go down the reconstruction route. I had my surgery in October and am now taking Anastrozole for 5 years they say. I feel lucky that i didn't need chemotherapy or radiotherapy. Sending hugs and wishing you well for your treatment plan, keep talking too, to friends and family and all the lovely ladies on this site. 

Hi Merlin 1664, that sounds exactly the same as my situation. I think they really should warn you that things can change when you have a lumpectomy. I’d also no idea that active treatment could last for 18/20  months, because I was only really aware that chemo lasts for a few months. I did know about Letrozole, although they’ve upped that from 5-10 years. It’s really good to hear that you’re still here and coping. Coping with it all emotionally is so hard and I’m swinging from feeling devastated to optimistic to very very low. Ups and downs to say the least. I hope your twins help you on your low days x

Thank you 4everMe.

I re-evaluated it all, after having decided for mastectomy.  But, as you say, it’s really such an obvious decision. I’m now pretty resigned to mastectomy and trying very hard not to worry myself silly about chemo etc. Focusing on the op for now.

it’s hard to know how to talk to friends and family, but I have an amazing friend that I can discuss anything with. And a very supportive family, but I honestly think they don’t know what to do or say either xx

Hi Rumple01,

I’m the end I rang my BC nurse and I did ask about the oncologist, but I can’t see her / him until after the mastectomy.  Anyway, I made the decision to go ahead with a mastectomy as there’s no choice really. It’s reassuring that you had the stockings on for only 8 hours - I had to wear them for 10 days after an unsuccessful neck/throat op last year. I was possibly getting a bit more worried about the stockings than I needed to in that case.

How did your chemo not go as planned?

It’s so nice for you to say to go the route I want, because it feels like a rollercoaster that I’m not in control of. I’ve tried to establish some control by buying a couple of drain bags and a little mastectomy pillow. But have lots of crazy emotions that are all over the place!

xx

Hi Yorkshirelass9

About 20% of lumpectomies don’t get a full margin for whatever reason, I was told of that before my operation but blindly just assumed my treatment plan would be as described to me … unfortunately things often change, and I do wish they would be more upfront about this, although maybe there is that much information that you have to take in that I’d wouldn’t all stick? If you click on my name you can see my profile, I had a lumpectomy and two more ops, no clear margins and extensive DCIS which hadn’t shown up on any scans. I had chemo (was pretty much okay) and then mastectomy with an implant, I didn’t need radiotherapy, I went back for more surgery reconstruction after another 2 ish years and am now about to change from 5years of Tamoxifen to 5 years of Letrozole. 

What I would say is that these changes all lead to having the very best possible plan and outcome for you, I know it is hard when you are in the thick of it all to see a way out at times, but you will and my advice is just to take each step at a time and not think too much about the next phase, just concentrate on the one you are in at present.

Best wishes

Jo x

I get it completely that you had people looking at you like you knew what you wanted to do. I found the decision making between the 3 options horrendous. One of the Nurses actually said to me she would know what to do, before I was having a late biopsy and still undecided. As if I was some kind of idiot !!!! My problem was that not having had any operations for umpteen years I didn't know how I would cope with a major op or whether my husband could look after me.