Hi 3 weeks ago I went for a mammogram and bingo I have now had a mastectomy to my left breast. Stage 2 N1 locally advanced invasive lobular breast cancer. Recommendation is chemo and radiotherapy. Just wondering if anyone has similar or can tell me about the chemo please. Waiting for an appointment with the oncologist.

Hi Suzi and welcome. I was diagnosed with lobular in December 2017 and was initially told that it would be a lumpectomy and radiation. However, the path report after surgery came back with a tumour twice the expected size with no clear margins and 3 nodes involved (not unusual with lobular, I now realise), so it was back in after Christmas for a mastectomy and axillary dissection. It also changed the treatment as I had to also have chemo. I started AC-T in February and finished in July, then had 3 weeks of radiation in August. I'm also now on Letrozole as the tumour was OR/ER positive. That will be for at least 5 years and probably 7 or 10, depending on what the studies suggest then. I won't lie - chemo is not pleasant. How you will react is an individual thing. Some women sail through it with no real issues and can keep working for most of the time, others struggle with it. I think most of us fall somewhere in between. I could not have worked for most of it so haven't. I learnt quickly how to "manage" the chemo cycles with medication and rest - you soon get a good idea of when and how you're going to react. The biggest thing is not to expect too much of yourself and pare down your activities to what is manageable. And ask for and accept support from those around you.Do you work? If you do and you haven't already done so, check out your Super to see if you are covered for income protection or trauma. There are usually conditions around it involving periods before it kicks in so important to know what they are (and you will need to get some of it signed off by the onc).My other advice is to try to take someone you trust to the appointment with you - it's always good to have another pair of ears as you will be amazed at what you don't hear.As @kmakm has said, the whirl does settle down once you know what your plan is going to be. This forum has been a lifesaver for me as the women here do get it.

Get the port but take any and all drugs they offer to you beforehand. I had lots of pain during the procedure as they didn't offer me any pain killers. I felt every needle and cut. Avoid that if possible. I have had nine chemo treatments so far since my port was put in, twice my port didn't work but seven times it did. Make sure you get numbing cream to put on the port area an hour before treatment and it makes the needle insertion less painful. The gnarly veins you may get if you don't get the port may cause problems down the track.

@Suzi_S61 I had mine put in under a general anaesthetic in hospital - day procedure. From memory, it hurt a bit for a couple of days and then settled into discomfort for a few weeks, mainly if I forgot and tried to lay on that side. That too, settled down and it would only be uncomfortable every now and then. I can't say that it was fun having it in but it made chemo so much easier and I am very glad I did it. There was a discussion about pros and cons from a post I put up earlier this year, To Port or Not to Port (or something like that). I got a lot of excellent info from people to make my own decision. I would definitely recommend having one. I just got mine out on Saturday and glad to see the back of it but would do the same again (not that I ever, ever want to).

Hi Suzi, welcome to the forum. Sorry you find yourself here, but I hope you find it as warm and supportive as I have. It's good for a vent, a rage, a sob, a multitude of questions and even a laugh.I didn't have lobular but there are lots of folk here who have and I'm sure they'll be along soon to advise. @Sister and @Eastmum might be able to help.One thing I know you will be told is that we all react very differently to the same treatments. There are some broadbrush similarities, but after that, it can be remarkable how diverse the reactions can be. Some people are able to work through chemo while others are not. One of the best things you can do is to not cross bridges until you come to them. Hard I know!If you're comfortable, maybe tell us a little more about yourself. Whereabouts are you? Do you have a good support system around you?I hope you're doing OK. It's tough at the beginning, but it gets better once your treatment plan is set and you get underway. Hang in there, K xox

My dad went through chemo eighteen years ago and just before he died he made me promise never to have chemo as it was worthless and destroyed ones quality of life. I was diagnosed with BC in April and after listening to the surgeons advise, I broke my promise. Do I feel guilty? Sometimes. Is the chemo working? Absolutely. Would my dad have changed his mind and told me to go for it? I believe so as he was a very intelligent man and would have looked at the success rate of what I was having. We make promises sometimes but when the facts change, well???? so I convinced myself that it wasn't really breaking my promise. My treatment is different to yours but the breakthroughs they are constantly making is giving cancer a kick in the nether regions. Once we beat this, and we will, we can look back and pffft at cancer. Go girl!

New diagnosis and Mastectomy | BCNA Online Network

32 Replies

Suzi_S61
Member
7 years ago
Feeling a little nervous about starting my chemo on Wednesday.
Laying awake because of daylight savings. It's 2.40am and I am wide awake. Filled in a couple of hours watching The sniffer on Netflix. At least I can sleep in unless the postie rings the doorbell. 😲😄😴
Suzi_S61
Member
8 years ago
Hi Sister,
thanks for the advice and your experience. I don't feel quite so worried now. I was a bit concerned about the pain of having it put in mostly, although I do tolerate pain fairly well. The BN said they give a mild sedative and local anaesthetic.
I trust the specialist he is very good. So will listen to him. The things we have to put up with!!!. Not like we really have a choice though.
Sister
Member
8 years ago
@Suzi_S61 I had mine put in under a general anaesthetic in hospital - day procedure. From memory, it hurt a bit for a couple of days and then settled into discomfort for a few weeks, mainly if I forgot and tried to lay on that side. That too, settled down and it would only be uncomfortable every now and then. I can't say that it was fun having it in but it made chemo so much easier and I am very glad I did it. There was a discussion about pros and cons from a post I put up earlier this year, To Port or Not to Port (or something like that). I got a lot of excellent info from people to make my own decision. I would definitely recommend having one. I just got mine out on Saturday and glad to see the back of it but would do the same again (not that I ever, ever want to).
Suzi_S61
Member
8 years ago
My breast surgeon will do mine and I think he is pretty good. I will check to make sure I will be numb.
Blossom1961
Member
8 years ago
Vangirl, they gave me some sort of anaesthetic during the procedure but it didn't work and I felt everything. My body went into the shakes and the only thing they offerred was a calmative. Something kicked in for the last ten minutes or so as I only felt pain for part of the stitching. Very traumatic. I wouldn't wish it on anyone.
Vangirl
Member
8 years ago
Wow @Blossom1961 no painkillers at all? I had mine in with a local anaesthetic plus pretty strong sedative. Can't imagine how painful it would be without!
Suzi_S61
Member
8 years ago
Thanks for the info Blossom 1961.
I will definitely ask for some pain relief.
Blossom1961
Member
8 years ago
Get the port but take any and all drugs they offer to you beforehand. I had lots of pain during the procedure as they didn't offer me any pain killers. I felt every needle and cut. Avoid that if possible. I have had nine chemo treatments so far since my port was put in, twice my port didn't work but seven times it did. Make sure you get numbing cream to put on the port area an hour before treatment and it makes the needle insertion less painful. The gnarly veins you may get if you don't get the port may cause problems down the track.
Suzi_S61
Member
8 years ago
Hi just asking if anyone has had a port put in? How did you find it? Not sure but thinking may need this after discussing with BN. Thanks in advance.
kmakm
Member
8 years ago
Good on you :)

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New diagnosis and Mastectomy

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