Has Anyone Else Questioned Whether They Have Made The Right Decisions About Treatment

I just want  to add that the breast care Nurses are fully trained ( a degree in nursing plus post graduate studies) and also are part of the multidisciplinary team that in public hospitals make the treatment decisions.  There role is also to be the patient advocate and can assist you in this way. They can also ask clarifying questions to the specialist on your behalf, therefore can be quicker than awaiting an appointment or get you one sooner than if you did it just yourself.

My best advice for you is to be a "difficult patient".  I highly recommend you get all the facts and you want some straight talking.  Always ask "why are you recommending this or that".  This is your life, your body. You need to have all the information so YOU can make an informative decision about your treatment.  I recommend you watch this video and become empowered.  Get educated Paulan, get results of every test, keep talking on this site, google all the best sites and for heavens sake talk to medical specialists only.  Good luck...

https://vimeo.com/136330348

Hi you are also worried whether you did the right thing not having a mastectomy.  My doctor said there is no difference in survival between mastectomy and lumpectomy and radiation.  So maybe that is one thing you could stop worrying about at least for the time being.  hest wishes 

Hi Paulan

I think everyone must be questioning everything all the time.

I know I am. I am kind of in a same boat as you. Had surgery 9 days ago and got results yesterday with my type of cancer being the really crappy one (ie type/grade 3) and even though node came out clear and margin was technically clear they did find a 2nd tiny tumor in the margin so regardless of the clear node I cannot rule out there are other tumors someplace inside of me.

Surgeon's words were standard approach with my type of cancer would be heavy duty chemo, then radiation followed by 'hormone' tablets... BUT since I am allergic to everything on the planet, have rubbish liver (congenital problem) and 2 small cerebral aneyrisams they may skip chemo and just do radiation and hormone supressing tablets.

They are having their 'panel' meeting to discuss me next week where they will decide how they want to proceed and I already know that regardless of what they come back with I will 2nd guessing it. 

I feel I am in that "damned if I do and damned if I don't" position.  If they do not give me chemo or (as the breast care nurse worded it) they go with with a "light version" of chemo I will be wondering what else I am growing in my body as the damn cancer they yanked out was 2.5cm and so close to the surface that i know it had gone from invisible to that size in well under 8 months so the mere thought of more tiny cancer spots like the one they found by accident in the margin will have me dreading the future.

Along the same lines - if they come back with "go Chemo" approach I will be worried that I may not make it through it seeing they are already scared chemo may kill me before any cancer could.

All in all it sucks. I guess it helps to talk to others about it and I sure am talking to everyone in that circle who will bear to listen to me and am asking them for their opinions and why they feel that way.

It was really good to listen to the view of the breast care nurse after I had spoken with the surgeon and I plan to see my gyno next week (to see what he thinks - fortunately for me he too is on that panel so will have 1st hand experience and exposure to all.of their views and my situation). Also planning to speak to my immunologist after I speak with the Oncolgist before I make any final decisions. 

I guess that is all we can do - go arround and ask everyone who is qualified to provide any input on this topic and ask them why they feel that way and why it is that they do not feel 'the other way'.

As my Gyno had put it to me when I told him of my diagnosis (I saw him before seeing a surgeon as wanted his take on the surgeon that was recommended to me) it is the job of everyone on that panel to give us the best chance for the longest life they can give us. His role on the panel at this hospital is to represent 'the quality of life' aspect and he had assured me that in all the discussipns absolutely everyone on it is 100% committed to give us the best possible outcome and the best health they can while placing us at most managable risk (as eisk unfortunately is inavoidable). I did find that reassuring and seeing how genuine and committed he was while speaking of the process.

Having said that - I surely will be making appointments to speak with a few of those professionals so that I can ask directly what their take was and how they wanted to proceed as well as eacctly why they chose that option and what they would do in my shoes as well as the risks of going the other way.

I reckon every single one of us has to be a Champion for her self - ultimately we hold our lives in our hands and as maddening as it may be to be second-guessing ourselves at least when we do it we know that we are covering all the alternatives and getting all the information. And it is only if we have complete information that we can make an informed decision.

Please go back and ask for 2nd and 3rd opinion if you are still doubting the choices made and I will keep my fingers crossed for you and hope it all works out for the best for you.

I can figure the Drs conservative idea of surgery and radiation as it might just be enough for your body to stop the breast cancer. Radiation can only be done in the same spot one course whereas chemo can be done multiple times for palliative patients to prolong life if necessary.

Once you have the lung biopsy results that will tell if chemo is required or not and it may even be a different recipe of chemo than for standard primary breast cancer, or even better, the biopsy may turn up nothing to worry about at all. Here's hoping for the latter. XXXX

I think we all wonder if we are doing the right thing. My cancer was small with no nodes involved but because of the type they have recomnended chemo. I've  felt really unwell  during treatment and many times have wondered if it was the right decision. I know one thing...public hospitals use a team approach...it involves surgeons and oncologists discussing each case and weighing up decisions. Your age and health are factors in that too. I agree, if really you are having doubts then ask for a second opinion. Even with a mastectomy though...if pos nodes, I believe radiotherapy would still have been recomnended. I also foubd the breast care nurses really helpful going through it all with me.

Others have suggested a second opinion and think this is a great idea.  If you get the same advice this will help put your mind to rest.  Also well worth seeing your oncologist again to talk it through now you have thought about it some more.  Chemotherapy is really unpleasant and I sometimes wonder whether it was really necessary in my case but I may never really know. I guess if I get cancer somewhere else I will know chemo was necessary, but didn't work.  It sounds like your oncologist has good reasons for not giving you chemo.  No point in having it if it kills you or damages your Heath badly.  Good luck.  

Hi there it too late for any questioning of my treatment and I remember that when I was referred to an oncologist who didn't recommend chemo after my surgeon said her hospital all recommended chemo duty to micromet but I felt ' I can do this' and it felt right. No gaurantees but the odds for me getting through the this life threatening event were always pretty good.  Oncologist made decision based on full picture and that chemo carries risks etc. my life continued pretty much as is and remained in tact: mortgage and school fees got paid. Lumpectomy ,radiation and tamaxafen meant it was all fairly low key with no scans, blood tests etc and now three years later yearly apps with oncologist and surgeon. That didn't mean I didn't have some high panic in the first few months. Interesting is that I consulted a gycologist oncologist as it seemed everyone online was having ovaries removed and over  a year ago he was sort of recommending removal for 'extra insurance' but a few months ago he isn't - he can't see any reason.  So glad Google and online forums exist but you can get a particular view which isn't represented of us all.  Good luck it's not easy!

Hi you can ask for a second opinion. It dosen't matter if you are going public it is your right to gave a second opinion. It is a hard time trying to make decisions because all we want is to be well and cancer free.. I always took someone with me to appointments as a second pair of ears helps.

It is your decision I remember the look of horror on my husbands face when I asked the doctor what would happen if I refused treatment. There was never a chance I wouldn't have treatment but I needed to know. My plan kept changing and I ended up with a mastectomy with immediate reconstruction and yes I did have chemo

Talk to someone and don't be afraid to ask questions I always had a list it is your body take care

Hi Paula

Do you have a breast care nurse that you can contact otherwise perhaps a Counsellor just to talk to about your treatment plan and options and effects - you need to understand and have confidence in your medical team.  Or even your own GP?

http://www.cancer.org.au/about-cancer/patient-support/

The pathology reports and your overall condition dictate the best options, what you need is reassurance and to be able to discuss.

Wishing you well as you go through the emotions and process, take care

Christine xx