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
8 years ago
I don't know if I am a freak, but I have been quite positive about this whole experience. People look at me wierdly or expect me to cry a lot.
It's just not me. I don't feel sorry for myself and there are so many people who are worse off. I have 2 good legs and arms and at least half a brain ( I know this from my bone scan) haha.
Suzi_S61
Member
8 years ago
Hi kmacm,
I AM doing my arm exercises as the specialist said that was the most important thing for my recovery, thank you for your support. Its certainly a journey and a half but everyone has been very understanding.
kmakm
Member
8 years ago
@Suzi_S61 Our natural bio rhythms dip at that time of day, so throw in a cancer diagnosis and a general anaesthetic and it's not surprising you get a bit more tired than usual. It will fade with time. The physical tiredness will always be worse at that end of the day as well. Are yoi doing the physio exercises.

It's good to have a plan eh? We humans like a bit of control and certainty, both of which are in short supply with breast cancer, especially when we're first diagnosed.

You sound like you're doing really well Suzi! Good on you. K xox
Sister
Member
8 years ago
I still don't have feeling back under the arm and I suspect I never will. The bonus has been moisturising after rads - if I start at the numb part, the cream has warmed up by the time I get to the areas that feel it!
Afraser
Member
8 years ago
My armpit belonged to someone else for quite a while after surgery. Not painful but also not connected. The nerves get a bit of a bashing and it may take some time to get back to normal. I still have a degree of loss of feeling, so assume now it's permanent but it doesn't affect anything. I don't wax underarms but if I did, I would need to be careful as sensitivity to heat and cold is the most obvious not-quite-there side effect. Best wishes.
Suzi_S61
Member
8 years ago
Thanks ladies. Your words of wisdom certainly make me feel more confident going forward. I believe I can actually get chemo at Leongatha Hospital which is only 15 mins away instead of traipsing through the hills to Warragul. Not that I don't appreciate the beauty of it but those bends might not be the best after chemo. I saw the radiotherapist and they have said I will have 28 sessions of radiotherapy after probably 6 months of chemo. It sounds a lot but its lower dose over a longer period of time to help with planning for reconstruction down the track.
I finally got my oncologist appointment for next Wednesday. I am actually happy about that because I will finally have a plan and some certainty around everything.
I have healed very well from surgery but get tired around 3 to 5pm each day. My partner notices. I also have what I think is either nerve pain or possibly some pain from things healing. It leaves a wierd numbi feeling but combined with local tenderness and massage seems to help under my arm and around my armpit. Its mostly affected in the evenings. Is this common?.
Sister
Member
8 years ago
On AC, I found days 2-5 the worst, although I was known to fall asleep on the way home from chemo. Then it would be a gentle recovery over the next couple of weeks just in time to get knocked down again. Keep a record of days and how you're feeling - it will help next time around.
Bettyboo
Member
8 years ago
Hi Suzi, Im so sorry to hear of your diagnosis and wish you well for your treatment. The ladies here are fantastic and a great support. Amazing how you get the feeling you have to have a mammogram. Im sure you will get to go on that wonderful NZ holiday. xxxx
Harvey1903
Member
8 years ago
Hi @Suzi_S61. Sorry that you you find yourself here. However there's truck loads of support, smiles and advice. I live in east gippsland and travelled to Peter Mac for surgery, and now go to bairnsdale for chemo. I've only had one round, it was just the first ten days that knocked me around, this week is really good. It's the unknown that's hard. Now I know what to expect next time it's not so scary. Just happy that I live in a country where I can get treatment and live a happy life. Take care. Julie
Brenda5
Member
8 years ago
I had only a couple of days of stay in bed on chemo days. Usually day 5 and 6 into the cycle for some reason. The rest of the time I was able to go out on my beach walks although I sometimes needed a lay down for a bit afterwards. I drank tons of water, like 3 whole liters a day. I think it helped. Take water in the car for the trip home from chemo as your mouth and throat can get really dry fast. I had to get a special toothpaste from the chemist, a very bland one for sensitive use and that was ok too.

Forum Discussion

New diagnosis and Mastectomy

32 Replies

Recent Discussions

Triple Positive HER2+

Feeling lost

Second Opinion

Inoperable

Recommendations-North Brisbane -Public v Private- Surgeons