COLD FEET! booked in for double mastectomy and axillary clearance

Thankyou for all your replies.

Ive only just had a chance to log back on here (Im still new to the page)

The surgery has been and gone, we got the devastating news that 13 out of 14 lymph nodes were involved and that there will now be more treatment after chemo is finished (already completed 4 rounds of AC now finished 4 out of 12 round of Taxol) Ill need my ovaries out which was hard to hear as we wanted more children, ill need radiation, the hormone treatment and ive been told I can try another drug called Xeloda?

The doctors have told us its even more advanced than they initialy thought with a high chance of recurrence and high risk of spreading. Psychologically we weren't prepared for the results post surgery, especially the 4 page pathology report, its hard enough going through this at any age, but at 30 with 2 young children, it really stopped us in our tracks and made us crumble. I was given compression garments to wear post surgery as fluid was already pooling in my arms/hands etc and alot of cording. Since starting the Taxol and the regular Dexamethasone, its increase the fluid retention in my arm.

The biggest thing post op is the fear and anxiety that has become a daily issue, the fear that comes when its out of your control, the fear that you dont know if or when it will spread else where, the fear of not being around to watch our children grow up and the fear of death itself.

Im a very positive person that can portray that im copping fine, and I think that is why not many people know that im suffering behind my big smile. Most of the time I can distract myself and get on with life, but its those moments in the car, or in the shower, or when I hop into bed, that my thoughts start running wild about all the "what if's"

I will try and jump onto the forums more, I think I need to find some support groups as well in my area. 

thankyou again for all your messages, it truly mean so much to me!

Hi. What decisions we have to make. I think the only wrong ones are those that you feel are not right for you, but feel pressured to make. 

Doesn't sound like you have much option about the axillary clearance, with positive nodes pr chemo. I had that too. The advice I would give on that is to try to see a lymphoedema physiotherapist before surgery, so they can get accurate measurements of both arms. This will aid in earlier detection of any changes. 

Take care, Lyn

Hi. I think sometimes the biggest challenge we have when given our diagnosis is having to then make decisions. I have stage 3 her2 and had to make the decision of single or double mastectomy. That nearly did my head in. I ended up making my decision on talking to my surgeon and GP. I decided on a bilateral. I am concerned about lymphedema now but have been given good advice from an OT. You will make the right decision and when you do I hope your mind will be a little calmer. All the best. ??  Airlie

I truly believe the oncologist would advise against surgery now if he considered it an issue. I too wondered if choosing a bilateral with expanders was the right choice and spent hours reading. But honestly I feel so much better now the tumour is out and am pleased with my partial cosmetic result. The finishing off will be after chemo. Hang in there. I am sure you thought long and hard about your decision. Hope all goes well. Kath x

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

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

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

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.

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