Hi Ladies, I was diagnosed last year with stage 3 breast cancer (invasive lobular carcinoma) ER positive, originally told it was Metastatic breast cancer as its in my lymph nodes by my GP and breast surgeon but onc will only document as breast cancer with node involvement, the breast tumor measured at over 8cm on the MRI and from memory the lymph node was around 3cm. Treatment was to start 4x fortnightly round of AC (completed) and start 12x weekly rounds of Taxol in the aim to shrink the tumor and stop it from spreading. Chemo seems to have shrunk the node tumor by half but cant tell if its effected the breast tumor. I completed the AC and started getting very anxious knowing the cancer is in there and could possible spread so discussed having surgery to get the cancer out before starting the 12 rounds of Taxol. Now im worrying if ive made the right choice or should I have waited till after the 12 weeks of Taxol? Ill be having bilateral double mastectomy (my choice to remove both) and axillary clearance, Im worried about how Ill be restricted after having all lymph nodes removed and possible risk for lymphedema? Does anyone else get cold feet before surgery and doubt there decisions?

There are no right or wrong decisions when it comes to some of the choices we have to make with bc. All we can do is listen to all that our medical team can tell us and weigh that up with what seems to feel right for you. It sounds like you have done this but I think many of us have lots of those what if moments during and after treatment. I was diagnosed stage 3 bc in May 2013. It was pretty scarey seeing those words metastatic cancer found in lymph nodes on the pathology report and a bit confusing too. My GP wrote metastatic cancer on my referral and that terrified me at the time. But like you I was told that it was Stage 3 not 4 when confined to the lymph nodes only. I finished active treatment and went onto Tamoxifen and now Femara. My life is wonderful and I feel very well now. As for Lymphoedema, the main thing is to be aware of the risk and find a good therapist who can monitor you and get onto treating you promptly if you have any problems. There is a lot you can do to help yourself through exercises and self- massage which really reduces your risk. Even if you do show signs of it lots can be done if it is caught early. Wishing you all the best for your surgery and further treatment. Take care. Deanne xxx

They may well agree to removing both breasts but they seriously would only remove the lymph nodes from the affected side and not the cancer free side. They need that one for anaesthetic and blood tests.

I'm sure there have been more times than we care to admit during our treatment that we have looked around and wondered if this was the right choice, but after I have generally wondered what I had been worried about and I haven't regretted any of my decisions, if anything I possibly appreciate them more. In your case you aren't changing your decision just the order of treatment. Same outcome, possible different timing and no matter how many times you go around it there will be positives and negatives for each option. Deanne is a great example of 'after' and how to look after yourself to minimise the risk of lymphodema. You will likely have a physio come and see you before you leave hospital, do the exercises they give you religiously as well. Good luck, Jen x

Yes that damn word metastatic! I read it in my report and must have gone white as my husband grabbed my arm and said are you ok? But then I realised it was metastatic, it was in my lymph nodes! And metastatic means it's spread out of the original starting point to other parts of the body ... Ie, lymph nodes... Mine is stage 3 too , 7cm tumour removed , with re excision of margins two weeks later and axillary clearance (2cm up if I recall) Undergoing chemo FEC-D at the moment, and also have to face bilateral mastectomy and reconstruction and/or radio.... My once says don't worry about mastectomy, my surgeon says I'm high risk of it returning, so I'm stuck in the middle somewhere at the moment! I am trying to get through chemo first then think about the rest... But it's such a huge decision to make! It's no wonder our minds are filled with what ifs! i guess you have to feel choice for your situation and that you're comfortable in yourself that you have made the right decision for your own peace of mind.... It really is a very hard and personal choice to make... Best wishes Xx -tracy

Hi there, Deanne is right, there is no right or wrong when it comes to our decisions regarding bc. All you can do is get as much information about your particular situation and try to make the most informed, educated decision you can. There are no certainties for any of us. It all comes down to probabilities. I have no doubt that if they thought your decision was going to impact the outcomes dramatically, the doctors would have told you as much. I think we all wonder if we are doing the right thing with what we decide with our treatments. The most you can do is make the right decision for you at the time. All the best with your surgery. Karen xox

COLD FEET! booked in for double mastectomy and axillary clearance

19 Replies

airlie
Member
10 years ago
Hi Dcp,

I am very sad to hear your latest diagnosis and I'm guessing you are still trying to get your head around the news.

So young to have to deal with that shit bc. Sorry about the swearing. But thats what it deserves to be called.

I am having regular lymphatic massages and that seems to help with the cording. Mine is to my elbow.

Do have your melt downs and instead of you always being the strong one (sounds like you are ) let others be strong for you. ??

If you need help ask for it.

My heart goes to you and your family.

Stay in touch with your progress.

Sending you kind, compassionate thoughts.

Airlie ?? ??
Deanne
Member
10 years ago
Hi DCP,

I recovered very quickly from the oopherectomy. I was fortunate to be very fit before surgery and I think this helped my recovery.

Starting letrozole did produce some side effects (mostly inflamed osteoarthritis and general aches and stiffness) but after about 3 months these diminished significantly. I would say that the side effects are now minor and do not effect my quality of life.

Doctors do have to tell us some pretty negative things at times but I have always asked about what I can do to minimize effects and get the most out of life. I have had a lot of advice from other women on here and will give things a good try if I hear that it might help.

My quality of life is what I would call excellent. Sure some parts of me don't work the way they used to but overall my quality of life has improved since getting bc. I have changed my priorities and put a lot of effort into researching about my health. Getting the most out of every day is my new motto. I have changed a lot about my life and I think most of it has worked out well for me and my loved ones too.

We can't change what happens to us but we can control how we let it effect us. Hope you find ways to make your life as good as it can be too. Best of luck with the rest of chemo. It really is the hardest part, I think. One step at a time. Deanne xxx
DCP
Member
10 years ago
Hi Airlie,

Yes I feel its completely out of my hands and I have no control over it, which is the frightening part. Most days I dont feel sick or ill or like im suffering, its just the psychological side of it all.

How did you go with the lymphedema? I have bad cording from my surgery that extends all the way down to my thumb, ive been wearing compression garments since 2 weeks post op (im 10 weeks post op now) and see my physio for massage.

Thankyou for your support xx
DCP
Member
10 years ago
Thanks Deanne,

How did you go after the ovaries/tubes surgery and the start of the Aromatose inhibitor? My oncologist said that my quality of life will definitely be effected, my response was it already has been the past 4 years of being so sick and unwell so whats another couple of years if it means I will be better lol

Im fearful that this chemo might not be working like the first AC rounds, my hair is growing back fast, nails are going, mouth isnt sore, although I had nose bleeds and coughed up some blood over the weekend ??

Ive been keeping busy tho and doing things I enjoy, its just those moments when it hits you unexpectedly and ill have a meltdown or anxiety attack.

I was looking forward to turning 30 back in Nov last year and had so many holidays planned this year and booked for my family, I havent been able to go back to study yet which is hard, but aslong as I get through this, I know I will be alot happier!

Thanks for your support! xx
DCP
Member
10 years ago
Thanks Kath,

Its just freaks me out with all the lymph nodes involved and knowing that the cancer didnt respond well to the inital AC chemo, there is still a chance that some cancerous lymph nodes are still in there. With my past health issues im very fearful of spreading to organs or if it already has with out being detected. They found a benign thing on my skull vault back when i had my CTs and bone scans. I just want them to tell me some good news already instead of being hit with bad news everytime!

Thankyou for your support xx
DCP
Member
10 years ago
Thanks Ann-Marie

I will check it out, I find it hard at the moment with my age of only being 30 and how severe it is. Im seeing a psychologist today to help with my anxiety and fears.
Cook65
Member
10 years ago
Hello there

I agree with Deanne. All of us have the what ifs hanging over our heads and the fear of reoccurrence but we have no control over that. None of us know how long we have in this world so make the most of every day and make as many special memories as you can. Make a conscious decision to be happy and enjoy your family. It's ok to have those worry's. That's all normal but if they start impacting on your ability to enjoy your life now, then you need to find a counsellor who can help you deal with those emotions. Good luck moving forward with your treatment. Karen xox
Deanne
Member
10 years ago
I think most of us have those moments of fear but it does get easier as time goes on. I always tried to rationalize the fearful thoughts with the knowledge that I had a terrific team of experts looking after me and everything they recommended was being done.

Now I continue to follow their advice. I had my ovaries and tubes removed last July and am told that being on an aromatose inhibitor gives me a much better chance of staying cancer free. I exercise everyday and know that this too can make a difference. I eat well and use the thought of recurrence as incentive to keep doing everything I know might help.

BUT most of all I try to make the most of right now. None of us know how long we have, not even those with seemingly full health. So I live well and try not to dwell on the what ifs. It does get easier. Use this network you will find it a great source of good info and support. Face to face groups can be great too if there is one nearby. The beauty of this forum is that you can 'talk' with someone who understands any day or night that you need to. Take care and good luck for the rest of your treatment. Deanne xxx
primek
Member
10 years ago
Truly devastating news that so many nodes involved and more treatment to come. But know your cancer is still curable and it's not classed as metastatic until it is in other organs...it is locally advanced primary breast cancer. Not that this will make it any easier for you. Know that we are thinking of you and here to hold your hand in this difficult journey. Take care. Kath x
Ann-Marie
Member
10 years ago
Hi DCP,

I just wanted to let you know that on our website we have a Local Service Directory that you can search support groups/ services in your area. If you click here it will take you to the page where you can search for a support group in your local area.

~ Ann-Marie