Mastectomy refusal?

Hello FlowerBomb, I understand that your family means well but we are dealing with a potentially fatal disease if left untreated.  Things have changed and new treatments and diagnostic testing is available now.  Can you get a second opinion as that may make it easier for you to make the decision .  Remember it is your decision to make and not theirs.  
I have one question is your cancer stage 1 invasive or DCIS which is sometimes called pre cancer? 
I had DCIS in right breast and stage 1 invasive in left.  Had 2 lumpectomies and radiation to both breasts.  I am small breasted too 34A) so was thankful I could have lumpectomies.  On my right breast more tissue was removed but still look symmetrical.  I would have needed a mastectomy if it had been a little larger.

It is not easy to navigate through breast cancer diagnosis and treatment and I hope you can get more support for your decision.  More information will be available once the surgery pathology is completed. 
Take care.

Barbara

Hi FlowerBomb……how difficult this must be for you…..having to deal with your diagnosis and also your mum’s views…..I agree with Hopeful Barb, that you need more information from medical sources, could you phone the breast care centre you are being treated at and ask the nurses to explain your diagnosis to you more fully…..explain your problem with your mum and the confusion over the grading of your diagnosis and treatment. 

I found the nurses very helpful where I was first treated, but I am aware that every hospital is different and every nurse is different. 

I imagine that you wish the cancer gone…..depending on your age and type of tumour some times treatment is not necessary….in much older women and DCIS type….my mum had this and was told that she would probably out live the condition…..but she chose to have a lumpectomy and radiotherapy……

I had a lumpectomy 3 years ago and small reconstruction on my smaller of my breasts….a B cup with my other a D/DD……I really wanted a full mastectomy as I wanted it “all gone”…..but the lumpectomy was all they would do.

It is difficult to make these decisions…. but it is you that has to make it….your body….your life….your decision….given the information and options that have been presented to you….

please ask for a full explanation of your condition and options…ask for it in words of one syllable if necessary….and ask any questions you need to fully understand your condition and options and outcomes…..( remember there are no silly questions) you need to fully understand in order that you can make an informed choice and use that information to make your decision…..you need information to make an informed choice…so make sure you have that information….sorry I seem to be on my soapbox here…but I am a retired nurse and fought hard for patients to have as much information as possible in order that they were correctly making an “informed decision”.

you will get more information on the tumour after surgery when all the tissue is examined by the lab and further treatment options will be discussed then.

Thinking of you x

Hi Hopeful Barb

Mine is in my left breast, and they've told me it's DCIS pre-invasive. However this is the 3rd diagnosis, having told me it's invasive then non-invasive which is why I'm questioning their motives. Do they even know what it is, telling me different things on different occasions?

I don't even know where to go for a 2nd opinion really. I wish I went private much earlier but it's not like I can afford that at the moment, and I've not got time to play with any more. I went back to my GP,  but they said I'd have to alleviate my fears to my hospital team etc...

This saga has been going on since July, and I still have appointments coming out of my ears in the run up to my surgery.

I am seeing my consultant tomorrow to talk through things, so I'll explain how I'm feeling and see what they say.

Thanks very much!

X

Hello Shoo

I met with my plastic surgeon last week and told him that to me it seemed the lump was shrinking a little, and asked if a mastectomy was required?

He looked on the screen, and examined me saying he thinks it may have grown. He said he's not the expert in that field as he deals with the plastic surgery side, and that he advises that I have a meeting with my breast care consultant to confirm what he told me and to make sure I am happy n confident with any procedure that is scheduled to take place.

I rang my breast care nurse and she explained this and that, then asked if I still needed to see my consultant. I explained it wasn't my idea, and that it had come from my plastic surgeon and now this appointment is scheduled for tomorrow.

I'm 41, and no no your explanation is quite fine lol!

I'm only questioning this as whenever I don't listen to my mum, things have a tendency to go wrong and this is pretty serious either way so it's blocking me to think clearly.

Many thanks to you also though!

X

Bless you FlowerBomb, our mother’s do have a large impact in our life don’t they…lol

I have just had, 5 months ago a full mastectomy on the same side as I had my previous lumpectomy 3yrs ago…..about 6 weeks or so after my first operation I ended up nursing my mum following a hip replacement then about 4 weeks after her hip she moved house and my husband and I moved her, with a removal company and unpacked and organised whole house……this time 4 months after my mastectomy she had her second hip replacement and I have just spent 6 weeks nursing her again……I am so glad that she only has 2 hips…lol…..

this time it’s not your mum’s opinion you need to take but the Medical opinion  of a specialist Dr and hospital team…..I will say that I found my mastectomy much more reassuring than my lumpectomy…..but that is just me.

see what your consultant says and take it from there.

best wishes x

Awwww, yes they do indeed! Hope your mum is well recuperated now.

Good to hear things worked out for you - you seem happy.

Yes so true, but she's told a hell of a lot of people who are thinking the same too so I have them on the forefront also.

I will attend the appointment, and give an update x

Goodness what a difficult situation you are in, really feel for you as I know how it feels 

As per the other responses I would ask for a further consultation, write down the things you want clarification on

E. G why is a mastectomy being recommended rather than lumpectomy, is is because of the type of cancer, or stage of it or my breast size? 

Try the macmillian advice line, they really helped me, they talked through things before I had my mastectomy & helped me formulated the questions I needed to ask as it was the second round of surgery for me 

It must be hard having your mother commenting, I'm sure she believes it to be supportive but sounds like it is adding to your confusion & anxiety.

I hope you get the answers you need to feel confident that the surgery you are having is right for you.

Best wishes x

As others have said, best to ask your oncologist and surgeon the questions you need answers to. They are the ones with the expert knowledge and although your mum may be trying to save you from a big surgery, breast cancer is very serious and if your medical team are suggesting a treatment plan, it is because they believe that is the best thing for your situation. They are trying to give you the best long-term outcome. and only have your best interests in mind.

I understand how confusing this all can become as so much information.  You may have DCIS and invasive cancer together as not unusual.  Your surgeon should explain everything to you in detail so you can make an informed choice .  It would help if you had a friend to go with you as another set of ears is good.  
I am a retired RN and felt overwhelmed too.  People think that because you are a nurse that you know all the different specialties.  Although I had a general knowledge I was not up to date so had to get myself up to speed.    
I think I was a difficult patient at times as I wanted to know every last detail.  My poor surgeon was so patient with me and I needed that from him.  
Good luck and listen well. 
Barbara

I just wondered how you’d got on after talking to your consultant, did you get a definitive diagnosis and reassurance? My niece was adamant that I should refuse treatment and use alternative so I’ve had some experience of family pressure albeit not my mother x