starting my journey

Deanne I have not considered any of the blogs as trying to influence me. I needed to hear of others experiences and things they have found useful. I am at that stage where I am gathering information and comparing it to the research. As a researcher myself I see flaws in the research and everyone's experience actually helps clarify the findings. Although I am 90% sure of what I am doing the 10% is there. I am open to change. Yes I am absolutely blessed with my family and friends. They keep me grounded esp Kat who was a breast care nurse. I have a long way to go in this journey and the thoughts and support of my fellow travellers is going to be critical. I know what Viv means when she says she has seen the worst of BC so have I in my clinical practice as a nurse but I know I am unique and most of the time strong. This is not the first time my life has been threatened when I was 29 I was in a head on collision and was 2 years off work. Since then my attitude to life's events changed. Joy xxxxxxxx

Sounds like you have some wonderful support. I was certainly not trying to influence your decision but just reassure you that if you do end up having a mastectomy it can be ok. As you say it will really depend on the issue of possible effects from radio. Viv is right when she says this can be different for different situations. In my case even though I had a mastectomy I still had to have radio after chemo. They were unable to completely avoid my heart and lungs because of my situation so I totally understand your concerns. With your own research and that of your daughter's as well you will be very prepared to ask all the questions of your medical team. This will give you peace of mind about your decision. Meanwhile reading other people's stories on here may help prepare you for what is ahead. It does get better once you have your plan. Hope you hear from your cardiologist soon. Deanne xxx

Hello Joy,

yes being in the medical field is hard for you, guess you have seen it all.  You are fortunate to have your family for support and for them to be in jobs that benefit you. 

For some having a mastectomy seems to be the only choice (and in some cases it is), but it is not. 

I hope your cardiologist gets back to you asap so you can get on with your treatment plan. Remember the squeaky wheel gets all the oil.

My experience from radiation was that the rays are directed across your chest and not into, thus having no effect on the heart or heart muscles.  I am sure your team will be able to advise of your particular case.

All the best wishes

Viv

 

 

 

Hi Viv I am a registered nurse which does not make this journey any easier but I do have access to the latest evidence based research. Which is as confusing as the sus websites. My daughter is also a nurse and she has been researching as well, my other daughter is a clinical psychologist so one can look after the physical side and the other my mental health. I just wish my cardiologist would get back to me as he can advise about the effects on my heart of RT that is going to be the deciding factor for me Thanks Joy

I hope you have a younger team working for your best interests,  and only take the advice from them.  Be guided by your Surgeon and Oncologist and Radiation Oncologist, there are many sites that you can google to get information from here are a couple.  Some information that you receive from others on this site is not necessarily  correct, or appropriate for you and your treatment course.

http://www.medicalnewstoday.com/articles/255497.php

http://www.cancer.net/younger-women-who-received-either-lumpectomy-or-mastectomy-have-similar-risk-recurrence-and-lifespan

http://www.health.harvard.edu/blog/for-early-breast-cancer-lumpectomy-is-at-least-as-good-as-mastectomy-201301295838

Wishing you all the best with your choice.

Viv

Hi Deanne Have a 2 page list of q for my dr. With half a page with s literature review of the current evidence. My 2 adult dAughters will be coming which is great. And yes I have a kit and reading some every night. I am blessed with wonderful friends who are holding me up Joy xx

The waiting is the hardest part but in the long-run it won't make a big difference and you can use this time to find out more about breast cancer. Do you have the My Journey Kit? This is a good place to find out more about what might be ahead of you. If you do end up doing the mastectomy option you may avoid the situation of needing more than one surgery too. If they have difficulty getting a clear margin sometimes you need further surgery. Keep busy and write a list of questions to ask when you get to your appointment. Do you have someone who can come with you to appointments? It can be so hard to think clearly and remember everything when you are still reeling from the shock of having cancer. Keep in touch and let us know how it goes. Deanne xxx

Deanne Thanks. I am leaning more to mastectomy as the risk of RT causing ischemic heart disease is significant. My cardiologist has not yet returned my call. I hate the wAit it's been 3 weeks and one more before my appointment because if school Hols. Thanks Joy

Welcome to BCNA. I am so sorry that you find yourself in this situation though. I gather from your post that you are trying to decide between breast conserving (lumpectomy) surgery or a mastectomy. You are concerned about having to have Radiotherapy if you choose a lumpectomy. I was not in this position but I can explain about a mastectomy and what is involved as this was the surgery I had when diagnosed last May. Firstly there is very little difference recovery wise between the two surgeries. I was surprised with how little pain I felt. A lot of the area is numb from nerves being damaged so it was more of a tight feeling rather than actual pain. After a mastectomy you may choose to wear an external prosthesis. These are very good and I honestly don't think anyone can tell that I have one even in a swimsuit. Some women also choose reconstruction surgery and there are options for this (there is a reconstruction group on here that has fantastic info if you need it). Reconstruction can sometimes be carried out at the same time as your mastectomy surgery but this is not always possible depending on your situation. I hope this info helps. If there is anything else you want to know just ask and someone will probably be able to help you. The main thing is to find out as much info as possible so you feel as comfortable as possible when you make your decision. Take care and good luck with your decision. Deanne xxx