I am newly diagnosed and had a lumpectomy and mammoplasty 4 weeks ago. My margins Show precancer cells and biopsy sent to USA for oncogene dx. Last week I was lead to believe i would need 2nd surgery and radio therapy. Yesterday i was told that i shall be having radiotherapy boost and no evidence that i need the surgery again even though my margins are under 1mm. I have been told its my decision if i want 2nd surgery and need to decide by next week. My logic tells me that getting it out would give me the best chance however they say the boost should kill all the cells… Im so overwhelmed, petrified and do not know what to do… Has anyone got any experience of this or can give me some advice please…
I have no answers for you as you face an extremely difficult decision but sending you a very big hug and thinking of you xx
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@1942ao do you mean grade 3? So fast growing? I’d talk in more depth with your team. I was borderline for chemo but my onc talked through options and more importantly how I was going to feel about it all now, and in the future!
Hopefully others will jump in with similar stories but it’s your body, your life… how will you feel in a years time with all the options.
I personally knew I couldn’t ever forgive myself if I didn’t do everything I could to put this behind me but plenty of people don’t choose more surgery or treatment.
Let us know what you decide 
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Thankyou x
Iv changed it yes grade 3. The decision re chemo is dependent on the dx result… I’m having radiotherapy boost. It’s the 2nd surgery I need to decide on x
I’m so sorry 1942. This is indeed a challenge. I have no experience with it but I do know that you’re the first person I’ve read whose doctor didn’t insist on going in and getting better margins. If it was me I’d probably do a second surgery but I don’t know if that’s the right answer. It’s just the answer most everyone else I’ve seen on-line has gotten.
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I had a second surgery which resulted in clear margins, but a small margin next to the skin. I had seen 2 surgeons at another hospital. I was assigned to a general surgeon, but requested to see his partner who was a BC surgeon. Her first comment suggested that requesting her had slighted her partner. Ooops! And her protocol was to take lymph nodes when there was no suggestion that any were involved. The radiation oncologist at the 1st hospital said I qualified for 5 radiation treatments over 2 weeks. My current radiation oncologist wanted to do 5 x per week for 4 weeks and I knew that would be way too draining. It’s an hour drive to their nearest clinic, plus the treatment would add up to 3 hours per day. They radiated the cavity left by the lumpectomy. I felt extremely tired after each session. Was it anxiety and stress or the treatment? It was stage 1 BC not detected on mammography. I felt a pea-sized cyst last November. An ultrasound identified a mass. During a needle biopsy of the cyst and mass, the cyst drained and was not biopsied, but invasive mucinous cancer was found, as well as, DCIS. I went on a month-
long vacation in Florida in January, changed providers, 2 surgeries in March, and just finished radiation this week. I’m 72 and will turn 73 this year.
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Hi
I’m no expert in all of this but I believe lobular or ductile cancer insitu is generally considered pre cancerous and they are not always considered necessary to treat as you would invasive cancer. NICE recommends in uk for surgical margins to be clear and most oncologists would encourage a re excision of further surgery as first line approach. I only know this because my skin margins following my surgery were very positive but as they didn’t know which bit of skin was affected surgery would have been futile.( I had a mammoplasty so nothing is where is was pre op!) I am now having radiotherapy and have been told this will ‘ mop up’ any remaining cells of concern.
Hope that helps alittle. It’s such a unique journey.
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My dcis is stage 3 removed remaining margin precancerous. My mammoplasty was a good outcome… but margins below recommended … so you are not having or had margins redone? Your having radiotherapy boost?
Did I read that correct?
That’s correct. Positive anterior margin (skin) - radiotherapy not further surgery.
That has been the recommendation by my team.
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I think the margin that remains positive can influence this decision - if it’s a radial margin they recommend surgery for sure
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Mine initially said excision now they’ve give me the option… this is why I’m struggling… my margins are 0.3… do you know yours…
thankyou by the way your the first person iv come across in the same situation… how do you feel about everything?
My surgeon said she would ban lumpectomies if she could and just aim for mastectomies to ensure clear margins in breast tissue as she hates performing lumpectomies and then needing to possibly repeat or end up with a full mastectomy. It’s so strange how some are very conservative with treatment and others more radical.
I don’t think it is fair that he is expecting you to make the call. Surely it should be out before a Multi-Disciplinary Team Meeting and a consensus arrived at? I’m sorry they’re putting the choice onto you and causing you such stress. X
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My surgeon says the normal oncologist was not available that 1st week which is why she wanted to revisit … hence the 2nd option… the oncologist feels there is no data for or against in such a minimal margin…
My surgeon is all for not going back in a feels the radiotherapy boost will be sufficient …
Are you in the U.K.? I would get a 2nd opinion from a breast surgeon. It seems unusual for an oncologist to really be wading in at this point on anything surgical except for whether chemo should be neo-adjuvant or adjuvant. There must be another breast surgeon who can consult. I know my approach was decided by 3 surgeons, 2 oncologists and 2 radiologists and sometimes more.
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I’ve struggled with the whole process to be honest. There seems to be a desire to give each woman choice over their situation and in doing so offer little or no guidance and very little expression of their working experience for fear of influencing or persuading. As far as I know my anterior margin is zero. All Radial margins 8mm / inferior 1.5mm. You are also the first person I have had any communication with in dealing with this issue. Which margin is it that they are concerned about for you?
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Oh bless you I totally feel the same way but I know I don’t want to delay things and I’m petrified if I’m honest … I simply don’t know what to do for the best…
All she said was the bad cancer is all out and pointing up to my head above the tumour is a very small area of pre cancerous cells
She didn’t agree with the one in the team
So wanted to consult with the usual one… I don’t want to delay things and don’t really have an issue with my sirgeon… I understand her rationale for what she is brought to the table… yes I’m Uk
It’s not my place to advise but I had this ping pong experience between surgeon and oncologist and like you was asked to decide. The mdt had already said radiotherapy but oncologist felt surgery still needed revisiting. Clinicians have a duty of care to ensure recommendations are followed and will be influenced by experience but to ask you to decide is unfair given our ignorance of best practise. I researched such a lot about my situation and read every research article I could find which was difficult given the relative recent use of therapeutic mammoplasty for cancer resection. In the end I asked for a meeting of my surgeon breast care nurse and oncologist to make a decision. I opted for radiotherapy with booster and a watch and wait approach. If there is reoccurrence then I will have to have a mastectomy.
Good luck with decision.
X
Thank you iv done the same I spent most of early hours reading articles and NICE guidelines but find a lot of conflicting literature. Yet im still no closer to a decision… I will bring this all to the table on consent day and go from there. Thankyou and all the best in the future x
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