Big scary decisions
Big scary decisions Hi
I have recently been diagnosed with high grade DCIS. i had a lumpectomy & expected to have radiation. Now there has been a massive leap to a masectomy/reconstruction as they did not clear the margins.
I have been told that I have a choice - but have been strongly advised to have a masectomy. I don’t understand why a further lumpectomy & radio won’t clear it up - & they want to remove some lymph nodes & have just realised that sometimes DCIS can spread to the nodes.
It’s all too much, too many decisions & too big!!! We have a great breast care nurse & my surgeon is great, & I trust his judgement, but it is such a huge psycological leap. It feels like they have found more than they bargined for - & are worried about spread. however I keep being told it is not life threatening & preventative sugery. Will I need more treatment after. feels like the start of a long journey.
FelicityM
Hi Felicity I am sorry you have had such a shock. I had DCIS well over two years ago and had to have a mastectomy with reconstruction. I had no choice as the DCIS was widespread but had not become invasive. They did take some nodes as well and all came back clear, so don’t worry too much it can turn out not too bad. I have been clear of cancer ever since.
I know it is not the ideal out come but if DCIS is in more than one area I believe this is the normal treatment.
Feel free to ask any questions if I can be of any help
Good luck
Suex
Big scary decision New user Scotty has replied to thread
Big scary decisions
posted on 9.09.06 6:05 pm
Hi Felicity
I know exactly what you’re going through - I feel I have been drip-fed bad news for the last six weeks…
I too, had surgery a few weeks ago and was looking at radiation therapy and was then told that it was ‘all over the place’!!! I am now booked in for a mastectomy on 18th September.
My surgeon is fantastic as is my husband and kids (all adults, thankfully - don’t know if i could have coped with this wihen they were tiny). I’m having an MRI on monday this week to determine the exact state of both boobs - there was only a tiny area visible on my mammogram - they very nearly didn’t recall me. Thank God they did!
Depending on the outcome of the MRI, I may have the decision made for me as to whether I optI am trying to remain positive and look on the positive side - telling myself that I have been handed a lifeline and not a death sentence. I just want it over and done with and all the bad news to stop. The ironic thing is I had been discussing the idea of cosmetic surgery just a few months ago and had decided against it. Now it looks as if i have no option…
I wish you all the luck in the world with your decisions - I’m putting myself totally in my surgeon’s hands but he understands I will ask him questions all the way!!
Scotty
hi Felicity
please try not to worry to much (i know thats easier said than done)
i was dxed with DCIS last nov and had mastec no recon my choice
when i went back for my 6 week check they told me they wanted me to have rads as they didnt quite get clear margins as you can imagine i was so worried but after talking to my bc nurse she said to think of it as belt and braces it really is the consultants being extra careful on our behalf i had 15 sess of rads and 1 booster and i have just been back for my 9 month check and all is fine ,
Dawn x
Thank you Hi Everyone - it’s a real lifelione for me getting these replies. I have 2 young kids & have just been left feeling overwelmed. I too feel that my surgeon is capable & being as careful as possible to stop anything getting worse. I am going back to ask more questions on wednesday - I am interested in the MRI scan to pick up what is going on. The news just seems to get worse, even though I know I have to keep it all in perspective (it’s not life threatening, it’s preventative). My husband is doing all he can to support me, but finds my emotional state hard work. I am insisting that he comes to all my consultations - & I think this is hard for him, because he is always someone who keeps his distance from “heavy stuff” (I quote!)
Anyway this forum is brill. I don’t feel so alone.
Thanks
FelicityM
Hi Felicity New user Scotty has replied again.
posted on 10.09.06 10:26 pm
Hi Felicity
Just an aside from my previous reply…
(just looked at it and realised there was an incomplete sentence!!)
At the back of my mind, since mastectomy was mentioned, was the question of whether I would ever feel comfortable and relaxed about the other breast. I understand, even if after my MRI tomorrow, they tell me that one is clear for now, will i ever relax? I have been contemplating opting to have an elective on the other for my sanity’s sake! God, this is a torturous journey - a bit like sitting in the audience of a theatre where you are watching everything going on around you and it’s all about YOU! But it’s not, because life was ‘normal’ a few weeks ago…
Anyway, just to clarify the reasons for my having an MRI, which may be an option for you. My surgeon was so surprised at the extent of my DCIS after my first surgery compared to the tiny amount visible on the mammogram ( there was a tiny cluster on the far left corner of my left breast, and after surgery the reports confirmed it was present in lots of ducts all the way up to my nipple!!!) . SCARY BISCUITS!!! The MRI is ‘belt and braces’ to give them a clearer picture of the cancerous breast and the other one (they have nothing to target as far as biopsy with the other one). He has been so sweet and the staff who have carried out the biopsy and wire guiding pallaver have been equally surprised at my outcome.
So tomorrow is another step in finally getting a true picture. My lovely 19 year old daughter, who has been a star, is coming with me and my best friend has arrived today to join the journey; then we’re going shopping!!! Results will be on Thursday, with my husband and my surgeon and then mon 18th is d-day!
Wish me luck… I’m with you girl - you’re not on your own. It helps me enormously to know I’m not, too.
Hugs (one-sided at the moment!!!)
Scotty
Thinking of you all the way!!! hi Scotty
Good luck - I’ll be thinking of you tomorrow & especially on 18th - you seem so up beat & brave. I have 2 boys 4 & 8, both lovely. I have been very honest with the older one & I know that he is worried for me - doesn’t it all bring into clear focus how important these things are. I get the night terrors sometimes wondering where it will end, even though I know we are lucky that they are so cautious & careful for us.
I am back to see my surgeon on Wednesday to ask some more questions & am waiting to see the plastic surgeons. I’m pretty sure that I will go for it, it’s not worth the risk & worry is it.
Keep in touch - I’ll be with you on Monday
Felicity