Hi everyone from Halla, my story so far

Halla

What are the next steps for you @Potter_21?

Anne65

@Halla So glad you have had great results following your surgery & with clear margins. Such a relief for you. I too, had a lumpectomy with clear margins, genetic testing & rad so a very similar path to you. I have been blessed with so much good fortune & good results all along the way & I am so very grateful. Three years on, I am now fully recovered, no medication & living the life I did pre-cancer. I pray that you have the same. Love & hugs xxxxx PS I LOVED my breast cushion too. I used it for months after my surgery & it went with me everywhere. 

Halla

That’s so wonderful, and very reassuring to hear @Anne65! May I ask what the genetic testing revealed? And how come no meds? I didn’t realise that was a possibility!

Potter_21

Halla, my next steps are to meet with the radio oncologist & medical oncologist in about 3 weeks time.  I  will be having radiotherapy & tablets. My surgeon said it will be up to the medical oncologist to decide whether I  need chemo. If so she thinks it would be just a precautionary thing as all margins & nodes where clear. 

Halla

I think my plan is the same, unless genetic testing suggests more surgery. How are you feeling? I’m gradually getting energy back. Working at home today.

Halla

Hey have you had /will you have COVID vaccine?

Anne65

@Halla My medical team wanted me to get the genetic testing done as my mum died of ovarian cancer when she was 46 years old so I was in the "category" to get it done. Depending on what the results were, depended on my treatment plan especially my radiation. My radiation oncologist told me that if my genetic result came back positive, I may decide to have further surgery ie a mastectomy as I would be of higher risk to get cancer again & if i do & then decide to have reconstructive surgery, it makes it difficult to do this after radiation & limits the choices of recon, as the underlying tissue is damaged after treatment. Lucky for me, my result came back negative so i didnt have to face all of those decisions & my rad onc could then go ahead with my radiation plan.

It was a very anxious time, waiting for the genetic result & also going through the testing. Its just a simple blood test but you have to see a counselor & you have to understand all the ramifications, by having the test ie how it effects the rest of your family, life insurance etc. You get bombarded with so much info but its important that you know the details. 

Initially, my DCIS was diagnosed as stage 1 but aggressive. As my surgery had such a great result, my medical team even wondered if I needed rad treatment as the trend these days seems to be doing less instead of more. After speaking with my rad onc & asking "if it was your wife what would you advise", he said he would tell her to go ahead just because my cancer was aggressive & it would give extra reassurance if any "leftovers" were still there!! I breezed through my 15 doses of rad having no side effects & used Mepitel film so I didnt have any redness, peeling or burning. I was very lucky.

Due to my great results, my medical team never even discussed me having to take any medication so i have never taken any drugs during or after my cancer. The only drugs were the pain killers following surgery!! I am very humbled & thankful as so many have had such a rocky road with their cancer journey. I hope that you are a lucky one like me & continue with good results & treatment outcomes. Stay positive, take care of yourself & we are all here for you. love & hugs xxxx 

Halla

@Anne65 thank you that’s really interesting and helpful. I will ask about that mepitel film! And for the explanation about radiation/ reconstruction. I hadn’t realised that. 🙏🏻

I’m poring over my post op report - I had a lumpectomy only , but it found 4 tumours and multiple associated DCIS. They say there were clear margins. I don’t know what this means.  I am worrying I should ask for double mastectomy. I’m worried there could be DCIS in the remaining breast and other breast that they didn’t pick up pre-op.  I might phone the surgeon.

Afraser

Please get your surgeon to talk you through the report, so that you understand it all. It’s terribly confusing at first but don’t worry, you’ll soon become fluent! Clear margins are usually a good sign! 

Potter_21

Halla, I  am feeling better. I  had a set back on Monday and ended up back in hospital for emergency surgery that night. I  burst an artery in my breast and it swelled up and was rock hard and very painful. My surgeon operated and drained and fixed the artery. Very sore & bruised. 

Anne65

@Halla Yes, ring your surgeon. When you read those reports, its easy to misinterpret things & fear the worse. The jargon they use is hard to understand at first so please dont jump to conclusions. Like @Afraser said, clear margins is a good sign. We all worry about remaining cancer cells that dont get picked up or are left behind after surgery. Its natural but please be guided be your surgeon & medical team & trust their advice. Having said that, if you are worried, speak to your GP or a breast care nurse, as a second opinion doesnt hurt. Its your body & sometimes we do have to take charge! I found my McGrath breast care nurse invaluable. I asked her every question that came into my head & she was wonderful. Good luck & let us know how you get on. love & strength xx

Halla

Potter_21 said:

Halla, I  am feeling better. I  had a set back on Monday and ended up back in hospital for emergency surgery that night. I  burst an artery in my breast and it swelled up and was rock hard and very painful. My surgeon operated and drained and fixed the artery. Very sore & bruised. 

 Oh that’s not what you signed up for, how scary! Glad to hear you are feeling better now though 👏🏻

Halla

I counted them up and there were 5 tumours and 9 DCIS removed. Is it common to have that many and a mixture of tumours and DCIS?

FLClover

@Halla yes, it’s common. I had 2 tumours picked up on the ultrasound and mammogram in my right breast, and one in my left. The MRI I had pre-op showed another tiny tumour in my right, plus additional changes in both, so I had a double mastectomy. Post op pathology showed the changes in both breasts were DCIS, plus there were also cysts and other stuff going on in there. Quite crazy 😳

Halla

Thank you @FLClover, that’s interesting info. I’m wondering if I should have had mastectomies too.  I had a lumpectomy as the doc said outcomes are the same in terms of survival. I haven’t started rads yet so I’m still trying to figure out if I should be asking for more surgery instead.