Indefinite referrals
I am just over 5 years since diagnosis. Both my oncologist and surgeon still see me each year. So I see one of them every 6 months. I have had an indefinite referral for my oncologist for 4 years but have always got a new referral each year for the surgeon. Last time my GP said “I’ll do an indefinite one this time to save you having to come in just for a referral each time”.I was happy with this. So today I arrive for my surgeon review and hand over my referral. I have my visit and all is good, yay! Then I go to pay and make my next year’s appointment and the receptionist says you’ll need a new referral. I say that I thought my doctor wrote an indefinite one and the receptionist gets really weird and rude. Goes on to say that if I insist on using it then she won’t be able to put through the Medicare claim and I will have to go into Medicare myself and do the claim. I have never had any trouble using the indefinite referral for the oncologist. They always put the claim straight through for me. The surgeon’s receptionist went on to be really ridiculous. She did not give me a card with my next appointment on and when I asked for one she carried on bizarrely insisting that she had already given me one. Her behaviour was really unnecessary and instead of leaving the appointment over the moon that I am still cancer free at 5 years I was completely rattled by her treatment of me. Has anyone had trouble using an indefinite referral?1.2KViewsSign in to react to this post23Comments
Do I or don’t I ?
I am 66 yes old - 3 years post lumpectomy and radiation Each review I’ve had means painful mammograms ( due to dense breasts) and ultra sounds - finishing off with a mammogram biopsy - yes at every review ! I’ve just had my third year review with the inevitable biopsy - results came back today as negative So here I am - emotionally spent - if it was just the mammogram and u/s then I could deal with that but it’s the lonely humiliating experience of the mammogram biopsy and the wait for results - I can’t explain to anyone who has not experienced the impact of a cancer diagnosis - then treatment and the emotion that you go through during the reviews I want to focus on life not think every time there is pain - my mind starts thinking and while I can bring my mind into the now - this is taking it’s toll i want to have a mastectomy - I need to do something positive - take control of this monster and be boss of it - not it of me My daughter is also on this journey - I know what to expect - I don’t need or want reconstruction - I want peace My husband thinks I’m nuts going down this road - how else do I find this peace ?1.1KViewsSign in to react to this post24Comments
How to curb the fear
Hi everyone, it has been quite sometime since I have been on the network. We have had other dramas in our life and my focus has tended to be on that. A couple of weeks ago my psychologist commented on how sever my anxiety and depression is. I have struggled so much emotionally since finishing my cancer treatment back in 2015. I coped so much better whilst I was having treatment. so much has happened though since then. Now my anxiety is off the ritcher scale. 2 weeks ago I developed a pain in my "good" boob. I wasn't too concerned, maybe a cyst. I couldn't feel a lump though. I saw my GP last Wednesday as it wasn,t improving and she referred me straight back to the breast surgeon. I have an appointment for this Thursday. In between times the pain in my breast has gone into my under arm and now the entire breast hurts. It is swollen and I have an ache going from the top of my shoulder into my neck. There is still no noticeable lumps. I haven't had any temperatures, so I don't believe it is an infection and I am post menopausal thanks to chemo, so I don't believe it is hormonal. There is no rash or discolouration but I am absolutely terrified that it will be inflammatory bc. I am struggling to sleep, partly from pain but mainly from anxiety. What if, what if, what if?????? I just don't know how to curb the fear. I have had several scares over the last few years and I have been a mess each time until I get the all clear. How do you deal with the fear and the anxiety about it coming back? I am and have been convinced that the cancer is going to return just because my original diagnosis was very aggressive.1.1KViewsSign in to react to this post17Comments
Oncologist Response to Fear of Recurrence
I went to my checkup with my oncologist on Thursday and I thought it worth sharing. I like my onc and trust him to be doing the best for me but I know that to a large extent, that's on faith and recommendations from other health professionals. He's a fairly quiet and reserved man who I have come to know more over the last 11 months and in all of my dealings with him, he has shown concern and care. Some of you might remember that a few weeks ago I had my treatment review with my surgeon (another one I really trust) and he dropped a bombshell on me that my cancer was pleomorphic and that it quite possibly had only been there for 12 months, maybe up to 2 years, prior to diagnosis. Now, this may have been told to me early on and I just didn't take it in. I still didn't really take it in when the surgeon said it recently but it has played on my mind since and of course, I looked at Google for pleomorphic lobular and didn't like what I read. Anyway to get to the point, this, in my words, is the gist of what my onc told me when I asked questions on Thursday: Firstly, they can only estimate how long the cancer has been there - there is no test that works backwards. My prognosis is good and the numbers are on my side against a recurrence. With Letrozole, it is even better. Obviously, these are statistics and while statistics tell a story, they don't help the individual. He said that he knew for me, there is only "cancer" or "NED". But at this stage, I have to believe in NED until it is shown to be otherwise. Because living, thinking every twinge or pain is a recurrence, is no way to live. And between him and my surgeon, they will be monitoring me closely. He also said that he knew that trying to live without anxiety of recurrence wasn't an easy thing to do but that it was really important for my mental health to try. His final words on the topic were that the best thing I could do to help prevent a recurrence was exercise and fitness but at this stage I had done everything I could do and that now it was time to try to get back to living. Before anyone gets upset with this, if I haven't imparted the tone of the discussion properly, that will be purely my fault. At no time was my onc suggesting that I was being foolish or that my feelings were unfounded. And these are my words because my memory is terrible (something he is aware of and understands!). This was all said in both a very professional and considerate fashion. I hope this helps someone who has gone through treatment and is trying to deal with the anxieties of living afterwards. While I know that I won't stop worrying immediately, I do hope it lessens. I was dealing with a pretty dark whirlwind of emotions prior to my appointment and what he said has certainly calmed that significantly. I have to try to live with what has happened to me. I don't know how much time I will have - 1 year or 40 years - no-one does, BC or not. But I do know that I don't want to live them under a constant cloud of anxiety.1KViewsSign in to react to this post18Comments
Scan or not to Scan - Post treatment
I have now completed treatment and I’m on Letrazole. I had IDC grade 3 ER + clear margins, 2x lymph nodes with adenocarcinoma and High grade DCIS - margins involved. I had 3x FEC and 1 out of 3 Docetaxel (Nasty stuff) 25 rads. No re section for DCIS, I was told chemo and radiation would take care of any cells left behind. I had a meeting with my surgeon on Wednesday and I asked whether I was to have a scan to check effectiveness of what I’d been through. I believed that 3 months after treatment this was normal. I was given a long drawn out story about the pros and cons of scans and told I would be best to wait and see if I get symptoms of returning cancers rather than having a scan which could show nothing however I could have G zero cells hiding and waiting to become active at any time, proving a negative scan wrong. I was also told G zero cells are dormant and are not affected by chemotherapy and can become active at any time and return. There was so much more I was told, that was in some ways a total back flip to what I was told in the beginning. Long and short, has anyone else been told this?802ViewsSign in to react to this post24Comments
To remove or not to remove..... that is the question
Hi all, I am 2 years post diagnosis. Left Mastectomy, Chemo, Radiation, Oophorectomy and taking Exemestane. I looking for advice from anyone who decided after treatment was finished instead of a reconstruction have the other breast removed for "evenness". I believe that the reconstructive surgery would be a pretty long operation as I don't have enough skin to simply slip a implant in. I just think it would be simpler to remove the other breast but any advice on either the pros or cons of this option would be greatly appreciated.800ViewsSign in to react to this post20Comments
Feeling different after cancer
Hi, Found a book on kindle that others may relate to, its called "after breast cancer" by hester hill schnipper. Lately ive felt a bit isolated and unable to describe to others around me what im feeling and how what has happened has changed me. Im finished with the worst (i hope) of the treatment but im not feeling like its over. Today i was in a book shop and looking at the self help books i couldnt relate to any, when youve had cancer does anything else that you might worry about make sense any longer? I tried to explain this observation to my hubby but couldnt really get the point across. Even buying a cookbook is hard. Im avoiding anything faddy and it all seems a bit pointless somehow. Anyway, maybe others will also get sonething out of this book. Michele601ViewsSign in to react to this post20Comments
Sex post breast cancer
Liz O’Riordan a British breast surgeon and herself a breast cancer survivor has written what may be helpful information on twitter today.Here is the link and hope those interested can access it and it’s useful. https://twitter.com/liz_oriordan/status/1309148050275917825?s=21599ViewsSign in to react to this post20Comments
recommendation
I am hoping that I can ask about this, but please delete if not. I am 18 months post treatment for hormone positive breast cancer stage 1. I had a lumpectomy followed by radiotherapy which finished in November 2019. I am no longer under the care of the radio-oncologist and see the surgeon six monthly. I am on femera from which I suffer a range of side-effects. Over the last few months I have been having increasing neck and shoulder pain on the side of the cancer. My physio, who I have consulted, is a sports physio and has very little experience in breast cancer related things, so I was wondering if anyone has come across a physio in Perth who has specific expertise in breast cancer? I tried to contact my breast care nurse who I only had minor contact with way back when, but no answer. Any assistance would be helpful Thanks500ViewsSign in to react to this post11Comments
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