Feeling alone and scared

Lauren11

I’m 36 with two young kids, newly diagnosed with lobular carcinoma. Have had a single mastectomy with axillary clearance. Pathology report shows 120mm (12cm) tumour (clear margins) and 23 lymph nodes removed, 10 with cancer. Starting 20 weeks of chemo in a couple of weeks, then radio, then hormone therapy (10 years). 

Doctor and oncologist use the term ‘treating for a cure’ however I’m still afraid about what the lymph node involvement means for my future.
Im looking for stories of people in a similar position and how you are looking at the situation and stories of inspiration of people who had lymph node involvement and how they are getting on down the track. Thanks. 

Zoffiel

@Lauren11 I was 43 at my first diagnosis; also a sizable lymph involved lobular tumour. That was nearly 17 years ago. I did have a local recurrence at the 10 year mark (there really is no point in sugar coating this shit) but I'm still here.

Chemo sucks for a week a month, rads are a lottery--you either cruise it or end up so resembling a roast chicken that you attract stray dogs-- and the hormone stuff is moderately horrible at first but you get used to it eventually.

Don't get too involved with the timeframes for treatment. That time would pass anyway. Just keep plodding forward. Mxx

Cath62

Hi @Lauren11, firstly sorry you are going through this. It's not easy at times and it is overwhelming especially as you start treatment. So much to learn, all the news terms and what it all means. 

There is definitely hope and treatment is so good these days, even if hard at times for some. We are all definitely and handle treatment differently too. 

For me after surgery I had 4 months of chemo. 3 weekly sessions and then 9 rounds which were every second week. Loosing my hair was emotional but otherwise chemo was ok except the fatigue. I drank lots of water on chemo days and always tried to take in some exercise too. Nothing too strenuous but walks were good. It was during lockdown in 2020 so I didn't see many people but had mt husband and son supporting me. Hope you have good family and friends support. 

After chemo I had radium of 20 rounds and it was ok. I used a product called mepilex. It's sort of like clingwrap and it covers the area where the radium is going. It sure saved my skin. I had a couple of small painful bits near scar lines but otherwise it was ok.

I am now on hormone suppression. I am going ok with that. I had one type and had a few unwanted side effects so my oncologist changed the treatment to another one and I am going well. 

There's a private group within this site for young women and that may be something you are interested in to compare notes.

My advice is stay in the present moment, go one step at a time and try not to think too far ahead as it simply causes anxiety. The what if thinking is not helpful. You can beat this. So many people have long and happy lives after treatment. 

 Look after yourself and take any help you can especially since you have small children. Eat well, less sugar and more vegetables, go for walks, breath deeply and maybe even consider meditation. If you need to see a counsellor or psychologist who has worked with people who have had breast cancer. I had a few sessions and it was helpful for processing all this. 

Best wishes to you 💐

Fufan

Hi @Lauren11. Sorry you find yourself in our group, but you"ll get support here, ask anything.  Have you a breast care nurse?  I believe they can be a godsend, though I never saw one.  Try to take someone with you to appointments as four ears are better than two.  Write everything down and ask for copies of all reports.  Now is the time to put you first: accept offers of help, in fact ask for help. I know it’s scary at first, but one step at a time, and the picture will become clearer.  We are all on different journeys.  Best wishes, and give those kids a hug.

Afraser

It’s really tough to face, and a big shock, but recovery is very possible and there’s probably never been a time when more is known about how to treat cancer. Good advice from all above - one step at a time, each case is individual, chemo can be manageable (I continued working with no difficulty throughout treatment) and talking things through with a complete stranger trained in cancer counselling can be immensely helpful. 

One of the risks of losing lymph nodes is lymphoedema so best to state it up front. Do not google this! As my therapist says, full of third world, 30 year old images! It can be worth getting a referral to a lymphoedema therapist, having occasional checks even if you do not observe any change. Early treatment, as with most things, has great benefits. Should lymphoedema occur, exercise (a few minutes every day), a well fitted compression sleeve and massage can work well. I’m over ten years post diagnosis, my arm is fine (normal lifting, working, no pain or discomfort) with simple care and about the only thing I shouldn’t/can’t do is soak it in a hot spa!! I’m the one soaking happily with one arm out of the water! 
 
Best wishes, it’s not what you planned but you can still have great things in life ahead of you, look at this as just one of the inevitable bumps in the road.