I didn't have chemotherapy.It had been mentioned at one point but my oncologist explained he felt it wouldn't add anything to my overall chances and the side effects would counter my overall recovery. .Hormone therapy and bisphosphonate would hopefully give me the same percentage of survival over the next 10 years-they ran my history through a programme called Predict (don't try this at home!) which is basically an algorythm sometimes used to work out treatment plans.
I read your comment about never Googling-good advice!There is a very good book which was recommended on this forum which I wish I had read last year when I was going through my treatment. "The Complete Guide to Breast Cancer" by Trish Greenhalgh and Liz O'Riordan-both doctors who had breast cancer.It is very clearly written and explains treatment very factually and sensibly.
I hope all goes well for you whatever you decide.If it's any consolation, a year later ,I have been able to put a lot of the difficult decisions and complications to the back of my mind and I hope you reach that stage too 🤗
Hi slightly lopsided
Thank you for getting in touch Im grateful to find some who has had the radiotherapy option and able to provide feedback. Thats great advice about the ongoing aftercare - ive come to realise this is now something to learn to live with rather than move on from.
Hormone therapy has been mentioned, but i think its tamoxifen I will be required to take as I am only 36.
Did you have to have chemotherapy? They have recommended I do as more of a sweep up.
Thank you for the reassrance about the surgery. I was so anxious the first time round so its nice to hear I may be a bit more relaxed this time
PJ x
Hi LMitchell
Youre going through the ringer just now to!
Its such a difficult choice between the options you are presented. I was also offered a mastectomy, but my surgeon said studies suggest the overall outcome in terms of prognosis to be the same (depending on the tumor and other factors of course) I just have to hope there is nothing sneaky hiding, also if we're not successful during the re excision I will require a mastectomy.
My lymph nodes were micrometases, I suppose this may be why ive been the option? Im pleased to hear your ANC went well with minimal discomfort thats reassuring to know.
Thats exactly it... You kind of hope after the surgery all you will need is a wee blast of radiotherapy and you'll be on your way, no such luck in our case! But whilst theres treatment theres hope!
Thanks PJ x
Hi Jaybro
Im so sorry to read of your secondary cancer diagnosis. How many years have you been diagnosed?
I havent met with the oncology team as yet so still relying on the opinion of my breast surgery and the breast care nurses, who have been exemplary to date. They havent really recommended one or the other as neither is really stand out better, they have just said its a personal choice.
Its so difficult, as no matter what decisions i make i will always question if it was the right one!
I try not to google as it terrifies me, youre right it doesnt consider or protect your mental health. I try to stick to forums like this as i find the personal touch and support much more beneficial.
PJ x
Good evening @Pjsrlife
I'm really sorry to hear your dilemma as some of it resonates with me.It feels as if you are being asked to toss a coin, doesn't it?!
If it's any help, I went through my treatment last year after being diagnosed with IDC Grade 2 ER+ HER-, picked up at my first screening appointment.I had a lumpectomy and like you , re-excision as I didn't have clear margins. 1/3 lymph nodes were positive from my sentinel lymph node biopsy .I trusted my team throughout as my hospital has an excellent reputation; they didn't seem particularly worried and proposed radiotherapy to a wider area-so I had it to my armpit as well as the collarbone area.
I would also suggest asking if hormone therapy is being proposed thereafter to reduce the risk of recurrence? For what it's worth, I was 52 last year and am now on Letrozole ( an Aromatase Inhibitor) for 10 years , as I was post menopausal, and 3 years of Zoladronic Acid( bisphosphonate )infusions every 6 months to hopefully reduce the likelihood of cancer coming back in the bones.
As an aside,I understand that both radiotherapy and full lymph node clearance give a higher risk of lymphoedema.I did all my arm exercises and recovered well physically from both surgery and radiotherapy and had full movement of my arm after surgery and after radiotherapy.I did however, develop a skin infection in my affected arm a few months ago after a tiny scratch from a rose, which made me realise the lymph nodes are maybe less effective at fighting infection after radiotherapy. Luckily, my GP was very switched on and alert to the risks of lymphoedema, so whatever you go for, take extra care to the skin on the affected arm. One more thing to worry about in future,I'm afraid-as if there isn't enough to worry about!🙄
Good luck with the re-excision, whatever you decide.If it's any comfort, I found more surgery after the first operation the easy bit.I wish I could say the same about the psychological side !😊
Take care🤗
Dear PJ
I was diagnosed IDC Grade 2 Er+ HER2- in June and have had a similar journey to you. I was offered lump or mast and preferred the mastectomy, so had that in July. I like you then was given the news lymph nodes were positive. I thought I would be offered radiotherapy or Axillary clearance, but they said they wanted me to have Axillary node clearance as the lymphs were macrometastes (not sure of spelling), and I would need clearance and then radiation to the chest wall to protect any remaining breast tissue (apparently although no boob, any breast tissue left behind the cancer may attack again). Finally, they are saying chemo, just to be sure. I had my Axillary clearance on Tuesday, they have just extended the mastectomy scar up my armpit, which I was pleased about as the scar had healed beautifully in the 5 weeks since the first surgery. It is a little more uncomfortable than after the mastectomy, but I know in three weeks it will be back to normal.
I, like you, were in a spin, I expected after the mastectomy I may have radiation and then get back on with my life, but this cancer is a bugger for curveballs. All along I have gone for the treatment I feel gives me the best chance of getting rid of it. For me, I was happier with the thought of no boob, I am pleased I did, as they found a much bigger tumour and also high grade DCIS, which would have meant going in again, and then the ANC too.
I hope that helps.
Hi
What a horrible situation for you. I trust my oncologist implicitly and, in his opinion, radiotherapy is the most effective treatment.
I had a mastectomy and full axillary clearance, followed by the full works. Because I’d had FAC, I only had radiotherapy to my chest wall and sternum. But they missed three tiny nodes that have now led to secondary breast cancer. I wonder, if I’d had radiotherapy to my armpit, would this still have happened? Maybe. They can’t always find everything. Personally I’d leave nothing to chance and ask if you can have both! If this isn’t an option, ask the oncologist which treatment s/he would choose. Just don’t start googling. It’s disastrous and dangerous because it doesn’t take into account our emotions - plus it’s often out of date.
I hope you get more replies to help with your dilemma. Wishing you all the best
Jan x
I was diagnosed IDC Grade 2 Er+ HER2- in May.
I had surgery 2 weeks ago where a lumpectomy and sentinel node biopsy were carried out. I received my results today and unfortunately my lymph nodes were positive and i have to have a re-excision as they did not achieve clear boundaries.
My head is still spinning and I dont know if im coming or going!
My surgeon has proposed two possible options;
1- auxiliary lymph nodes clearance
2- radiotherapy to the arm pit
I am aware both have potential side effects, and my understanding is neither option out performs the other in regards to reoccurrence etc
I am unsure if I have the node clearance does this mean i still have to have radiotherapy to this area?
I would be interested to hear others experiences of both the above options to help me arrive at an informed decision
Thanks