Making choices

Hi Evey, the first thing I would consider is how important it is to you to do everything in your power to keep the breast, and weigh that against the possibility of needing to go back into surgery now, as well as what it may mean long term in terms of that breast possibly causing any future issues. There is also the question of what if they again do not get clear margins, and what that might mean in terms of the systemic treatment. (The oncologist and the surgeon should be able to help with answers to that.)

There is no right or wrong answer to this; it's a choice that needs to be decided based on personal preference and of course the existing medical situation, and also the projected cosmetic outcome of further excision.

There are several women here who went through this. Some chose re-excision, some decided to go with a mastectomy.

The waiting, though, that can be really tough. Some ladies try to distract themselves as much as they can, some try to find out as much as they can, so find that talking to the people around them or here on the forum helps. I once calculated the hours, minutes, and seconds until a certain appointment... not my best moment, but it sort of helped to see the numbers going down. Not that I recommend it, I am just giving it as an example of the different ways we find to help ourselves.

Thank you for your reply GreyCats.  My surgeon told me that i wasnt a candidate for reconstruction because of a previous surgery on my abdomen making the skin not viable. Tbh i am leaning towards mastectomy. Cosmetics are less important then having the staying power to get through the rest of the treatment at this point. It has now been 5 weeks since my surgery in which they found that the tumor was bigger than when they found it. So its fast growing. They said it will be 3 or 4 weeks before another surgery. 

I think my brain is telling me that because its cancer there is an urgency to treat it but that doesnt seem to be the case. I cant get the two to marry up. I feel lost most of the time. I have tried doing various things to take up my time. Taught myself to crochet etc. My neighbours are all caked out because of baking and i walk miles everyday.  I think that once it all starts moving forward i will probably be fine. Like you say counting down the time. 

I have to have my MUGA scan tomorrow then a bone scan and a ct scan. Im glad now i took the step to put up a comment on here. Im sure it will help to chat with people feeling the same 

Evey

Evey1974 said:

because its cancer there is an urgency to treat it but that doesnt seem to be the case. I cant get the two to marry up.

I am going to try and answer that by giving an example from elsewhere. A wounded solider is being brought into one of those field hospitals. He needs urgent surgery. However, in a lot of such cases the smart surgeon would first order a couple of bags of blood to make up for the blood he'd lost, and another drip with some antibiotics to counter any possible infection. Then, after about two hours of preparation, the patient is stable enough to go under the knife and his chances would be far better than had the surgeon tried to go in immediately.

Deciding when to start systemic treatment after surgery for a cancer patient is not exactly the same, but there are parallels in that you want the patient to be in the optimum condition, not only for best results but also to avoid certain possible side issues that could backfire if you start too early. A lot of it is a judgment call in an effort to keep the right balance, which is one of the reasons they have MDTs and discuss patients amongst themselves in an effort to give each patient the best they can come up with.

In an ideal world, this would be it. Unfortunately, sometimes there are delays introduced by a pathology report not arriving within a couple of weeks, the availability of operating theatres, and so on. The teams are aware of these issues, but any time you feel there is too much of a delay, talk to your nurse. 

Hi Evey

I'm sorry you are going through such an uncertain time. I am faced with a similar decision ( I think i started a chat on here called lumpectomy or mastectomy). Everyone on here has been so helpful.

I was diagnosed before Christmas with a Grade 3 invasive cancer ER +. I had my first excision to remove the tumour on 1st Feb and unfortunately the tumour was bigger than expected and there were no clear margins. I was given the choice of another excision or a mastectomy.

I have eventually been to see two surgeons. One recommended a mastectomy and the other (an oncoplastic surgeon) recommend another excision with a wide area of tissue removed and a partial reconstruction at the same time. With removal of all  lymph nodes at same time.

They are now debating which one to do. So 3 months in and I like you still face further surgery, chemo and radio.

I have learnt that things change all the time in this journey. I am trying to just take one appointment at a time otherwise I find myself going mad. I have to trust that they won't leave me sitting around for the cancer to get worse. But this is sometimes hard.

I hope everything works out well for you.

E xx

My surgeon said that there were a lack of pathologists and surgeons and i understand that. But on days where its a bit darker its difficult not to wonder why things are taking so long. My nurse is very good and is never too busy to have a chat. 

Your story above makes alot of sense. Thank you for that. Its good to know that there is always someone ready to listen 

Evey x 

Hi E,

Sorry to hear that you are sitting with the same choices as me. I have to be honest, at this point i am leaning towards mastectomy but i think alot of that comes from what i have gone through in the last 4 years. I had a distal pancreatectomy with splenectomy in feb 18 and then a stroke in jan 20. As a result i just dont want to have another surgery with no guarantee and then have to have another after that. Thats why i am leaning to mastectomy. 

Have you found that you can find support and answers when you need them?  I hope we can keep in touch as we seem to be on similar journeys and would be good to be able to see each other through. 

I always have a listening ear if you want to chat about the choice in front of you. Take care of you. 

Evey x

Hi Evey

My that's a tough decision. I did not have to make exactly the same decision as you, but I totally appreciate how difficult the decision making is. I found it so anyway as was desperate to make the right decision, with no idea of how I would feel after the op, not having had one since the age of 4.  I had to make the decision on reconstruction but I note you don't have that particular option. I would tend to ask the Surgeon point blank  if he/she thinks re-excision a second time around would do the trick ? I had to have a second implant done due to a haematoma, but was kind of resigned to that as was determined, having chosen that option, to do all in my power to make it work. My way of dealing with it was to be very flexible, not get over impatient, (which is difficult when there are so many delays and people needing treatment) and I know this sounds trite, but try to be positive i.e. believe that the treatment will work for you. I was very upset initially, at the point when I was told I needed a mastectomy on one side, but it has been fine actually. The thought is worse than the actual op. To me the re-excision sounds a lesser thing than the mastectomy. My view is that you must ask the Surgeon what the most sensible option for you is. I gave my Surgeon a kind of preferred options list and asked her if it was sensible. The less invasive the operation is, the better, I feel, and I also told her I wanted the cancer gone - which was more important to me than aesthetics.

Hi. I had a wide excision in Nov 21 and margins were not clear.  Surgeon said i need re excision or mastectomy.  I said I wanted to try re excision and she advised chemo first. I have last chemo session to do this week and appointment so see the surgeon again.

I'm.hoping that the chemo has helped and that the margins will be clear next time.I'm really worried if not , as i don't know how I would cope with a mastectomy. A lot of you on here are very brave having a mastectomy. I don't know how to cope with that. She said I wouldn't be able to have reconstruction if I had to have a mastectomy as I need radiotherapy. 

Xx

Bobbiboo said:

She said I wouldn't be able to have reconstruction if I had to have a mastectomy as I need radiotherapy. 

In many cases they can do a reconstruction later, even years later. If it does go to a mastectomy, this may be worth exploring.

Thanks.  I thought she meant never maybe she meant not at the same time.  I thought most women had radiotherapy and many seem to have re construction

Xx