Confused by treatment plan

Hi

I had a Mastectomy and was only given Radiotherapy as they didn't get a clear inferior margin, I was told if the surgical margins had been clear I wouldn't have had RT following a mastectomy as it would be considered over treatment, the rationale is that they've removed all the breast tissue with a mastectomy and if they get clear surgical margins they consider there are no cancer cells left in that area. I hope this helps. Let us know your Oncotype DX results.

Best wishes. 

I had a mastectomy,  with a question mark about radiotherapy as I had cancer in 1 sentinel node.  I saw the radiotherapist just before Christmas and he said  that there would be no benefit for me.  The criteria he goes by for benefit are (and there may be more as he was only saying in relation to me) if thr tumour had been over 5cm (I was 2.7cm), grade 3 (I was grade 1/2), LVI present (I'd no LVI), no clear margin (mine were clear), in the nodes (i had it in 1/2 sentinel nodes,  then all 3 levels removed and nothing more found anywhere). I've just finished 5 months of chemo and I'm also on Letrozole for 5-10 years. He said that about 5% of breast tissue is left behind on average after a mastectomy,  but my tumour was near the chest wall and the surgeon cleared the  adjacent area more easily than if it was fatty tissue elsewhere. Radiotherapy on average adds 20-30% survival to the existing figure.  My statistical figure on Breast Predict is 6% chance of dying from it in 10 years and radiotherapy would have statistically reduced that to about 4.5%. I know that anyone could still be in that 4.5%, but can only hopethat new research changes all our treatment options by then:)

  I'm afraid i don't know much about lobular cancer,  but your team will know what's best for you.  There are risks with radiotherapy,  and it isn't a guarantee that it will kill every cell,  which is why they have to look at everything for benefit over risk, though risk is very low.  Clear margins and clear nodes after a mastectomy is a great result!

I had Lobular breast cancer grade 2 and had a mastectomy on 9th October and nodes thankfully clear. I was told I would not be having radiotherapy as I had the mastectomy. My consultant is lovely and I trust that she is giving me the best treatment. I  had the onco dx test and my score was 8 so no chemotherapy.  I am now on Tamoxifen. Hope you get a low onco test score x

I don’t need any further treatment other than hormone therapy after my mastectomy and after the initial  euphoria, I went down into quite a slump, worrying about the endless side effects of the hormones that I read on line (note to self : don’t look !!!) and feeling quite abandoned by the system, after having become so medicalised and dependent on my team. Just a bone density mesure to do, to give a base line to see if the hormone therapy is damaging my bones (osteoporosis ahead ?) and then away I go, until my next mammo in November. My hormone prescription will be managed by my GP. It feels like I am back to normality in a way I wasn’t expecting and yet I am still off work for another 2 months. Rest and recuperation, I guess. My surgeon did say to me that my body is fixed but that my head will take long to get used to the new post-mastectomy me. 

Hi Froggy

I'm at the same stage as you. Just been discharged from surgeons etc and just on hormone treatment to sort. I've had a two month break because I felt so bad after Rads.

I know how you feel about being abandoned. This is my second lumpectomy. Last time, 13 years ago, I had support for 5 years. This was gradually reduced over that time. Effectively we were weaned of support. 

I always say when asked about the cancer that it was cut out of my boob but it wasn't cut out of my head. This time I'm really struggling to bounce back.

There is support over here, the Haven is great and I think I'll be heading there soon. Not sure if there is anything similar in France. Meanwhile we have the support here. I often wonder how the NHS would cope if McMillan support was withdrawn. It appears that McMillan heavily subsidise the NHS.

Need to stop typing, trigger fingers causing pain. Side effect of letrozole!

One day at a time.

Hugs and love.

Thank you ladies, it's hugely helpful to read your stories. The day my lymph node biospy came back I was rung by the breast care nurse and she told me that they had reviewed 99 women that day as Christmas had delayed results. I am amazed by their kindness and patience but I did have a hope I'm not slipping through the net feeling. I'd love to speak to my consultant for ages but there is always the pressure of clinic times hanging over us. My sister has metastatic breast cancer so I feel like I want to get whatever treatment I can do decrease the risk of recurrence but I do need to trust the experts it's just the lack of time to explain why my treatment plan is so that makes me feel unconfident. Just the wait for the onco test results next x

Thank you and wish you all well x