New diagnosis and Mastectomy
Suzi_S61
Member Posts: 68 ✭
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.
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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 xox1 -
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.2 -
Thankyou ladies I really welcome your advice and experience.
I am living in South Gippsland, Victoria. I have been attending Warragul Hospital which I have been told I can also access for chemo.
It's the nearest treatment centre to me, about 40 mins away.
My history is that my Mum died at 39 from breast cancer so I was always on the look out for lumps. In 2012 I noticed a change in my left nipple. It seemed to be pulled in a bit making it look different to my other breast. I ran off to the doctors very concerned. Got it all checked out, biopsy on a benign cyst.
Given the all clear but made to feel like I was wasting the specialists time. Quite rude. Like I was some paranoid older woman. Just looked at me blank and said "Theres nothing there, there's nothing more I can do for you."
I thought I must have been overreacting over the changes and put it behind me.
Since then I have gone through a divorce and dealt with the dramas of 4 older teens.
Here I am now, happy, in a loving relationship with a very supportive partner and in a part time job I love ( my colleagues and boss are the best I could dream of ).
A year ago I started my own driving school also and have been steadily building on that through a NEIS program. I have had to terminate that for a year. (It was just really taking off) I have put my business on hold ( although if I can do a few lessons I will ) depending how sick I am with the chemotherapy.
We were all set to go to New Zealand and I just decided I needed to have a mammogram.
Well here I am now everything turned upside down but I am strong mentally. I have the odd moment where I feel a bit sad but mostly that we had to cancel a wonderful holiday.
Life comes first so I am quite determined to get through this and get back on track with living my life. Is this a challenge? Well bring it on. 😄
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BC just comes in and stuffs life up, doesn't it?0
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Really bad timing lol. Ah well, lifes tough and we have to roll with the punches. I'm just trying to figure out what life lesson I can learn from this. Maybe I won't know until I have gone through the process. I am a very positive person so always see the rainbows. I hope I can help others to keep a smile going through the trauma. 😃😃0
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Just wondering if anyone questioned the treatment? EG: Is this really the only option? Were you okay with the recommendations?
This is coming from watching my Mum on chemotherapy 40 years ago. I swore I would never have it.
Obviously if it's the best guarantee of survival then I will have it.
Sometimes just wonder who thought poisoning your system was a great idea lol. I am saying this a bit tongue in cheek. I know they are
constantly doing research. Does anyone know much about the immunotherapy treatment and is it suitable for lobular cancer? Is this something I should ask the oncologist? . Hope I am not overwhelming everyone with too many questions.0 -
Ask away... I did consider the pros and cons at the beginning but I ended up with the thought that I don't want to find out in 2 years or 20 years that I should have had the chemo. I lost my older sister to this in 1999 so thoughts of her are constantly with me. I don't know about immunotherapy for early stage - definitely ask your oncologist - you don't know if you don't ask. I used to go to each appointment (and still do for the reviews) armed with a list of side effects and a list of questions.1
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These are all good questions to ask. Given your previous experience, you will be sure not to be fobbed off. Your medical team will doubtless give you what they think is the best option for your survival. They are less concerned about your quality of life, which is fair enough for them but matters to you!
While chemo is still daunting, it is managed better than it was 40 years ago. I worked through chemo, because I easily could. Unfortunately there does not seem to be any reliable way of assessing how you will go until you start. Practical thoughts are whether you have any pre-existing conditions that chemo might particularly aggravate? You also need to consider that if your reactions are intolerable, you can stop. I didn't have radiotherapy, so can't speak from any experience but many people find that and work sort of manageable. Best wishes.0 -
Thanks again ladies. Every little bit of information helps me to face this with determination to get through it and continue on with living a very fulfilling life 💖0
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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!1
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Yes I see your point Blossom1961
If there is the slightest chance it can save me from secondary cancer I should take it.0 -
I think @Harvey1903 is in Gippsland, she may be able to give you some tips on local services Suzi.
Sounds like you've got a great frame of mind to tackle this challenge, and a wonderful supportive partner. If you're anything like me you'll find this experience will deepen your understanding of yourself. This can be very challenging but very enriching.
I watched my mother have breast cancer in 1986. The treatment was brutal then, but boy, it's come a long way. Chemo is in no parts fun, but for most people, it's not the horror show it once was. It requires patience, self-care, the knowledge that this too shall pass, and determination. Keep exercising and your side effects won't be as bad.
Every now and then we have someone who poses the question here about possibly declining chemotherapy as a treatment. As the other folk have said, it's a good question to ask. Speaking very personally, I made my decisions based very much on the desire that if my cancer came back to kill me, I would never have to look back and say "what if". My sister died from this two years ago, I know what that looks like very intimately.
Your oncologist will be able to show you an online tool into which you put your details and then, adding each type of treatment, the percentage increase in your being alive in five and ten years. These are of course statistical averages, and the ten year figure is all causes, and it's based on reasonably old data now, but it is a handy indicator.
It is also fair to put the hard word on your oncologist what the possible permanent or long term side effects are. A lot of us have found that they hesitate to tell us at the time when the decision is being made. Possibly because it's information overload, possibly because they have the firm belief that what they are advising is the best course of action. The bottom line being that as unpleasant as it is, currently chemo is the best weapon in the arsenal against cancer.
Listen to your medical team, listen to your gut and make the decision you can live with the best. K xox0 -
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.0
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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. Julie0
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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. xxxx1
