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.
Triple Neg.. Good News
It’s been a while since I last posted last post I was going through my first round of A/C and in hospital with Neutropenia well I ended up in hospital 2 more times after that but luckily nothing to serious. July 3rd I went for my lumpectomy and sentinel lymph node removal (3 in total) all seems to have gone well although still a little tender. on the 14th of July (yesterday) I went to see my surgeon and I’m pleased to say I had a full pathological response to my chemotherapy. Clear margins and clear lymph nodes. Radiation is still happening but that’s ok. I see this as a positive thing. I am so pleased with my result and wanted to share my good news in hope it bring’s hope to others with triple neg like myself but also to other fellow breast cancer fighters out there I know that I have a long road still ahead of me to be classed as a survivor but it’s a bloody good start and I’m going to enjoy every milestone that brings hope. peace love and best wishes to all x
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. Michele
So I have BRCA 2 mutation 🙄
I'm coming up to 12mths post chemo. 18mths post double mastectomy. 6mths post oophrectomy (ovaries out) after my IDC diagnosis after self detecting a small lump at age 46. Genetics is obviously something they put on a back burner during all this process but my sample was sent to the US after my recent genetics appointment. Results are in BRCA 2 identified.. I have mixed feelings tbh. First thought..oh my kids! Please don't let my family endure anymore elevated cancer risk. I have 3 children 2 daughters and a son i guess the chances are one of them does at least.. Then thank goodness i opted for a double mastectomy, and i chose to remove to remove my ovaries also. It looks like my risk of other cancers is also elevated now. Sometimes i really wish i could go back to the good old days, pre cancer! Oh how sweet was life! Today i have to talk with them about getting tested. 😕 but knowledge is power they say. Thanks for listening 💜
I'm all finished treatment.
In Oct 2015 I was diagnosed with mixed IDC/ILC with one node affected and stage two. I had a single mastectomy followed by a full axillary clearance to made sure no other nodes were affected. I then had 4 doses of chemotherapy and took Tamoxifen for 2.5 years and Letrozole for 3 months. I saw my oncologist yesterday who said I was one of the 15% (or percentage) who needs their hormones to maintain good heart health and with my particular cancer and treatment there was a 65% chance I didn't need hormone therapy anyway and since I had stuck it out for almost 3 years that will do now. So I am free! No more treatment apart from a bone density scan later in the year and an annual mammogram for the rest of my life. I am ecstatic! :D :D :D
Feeling a bit down
Hi, it's been a while since I last posted. I was first diagnosed in Jan 2018, had a lumpectomy followed by 12 rounds of chemo followed by 25 rounds of radiation. I was pushed into menopause and then last year had a double mastectomy. All of this I think I managed relevantly well but just lately I have been struggling with sleeping, eating and just things in general. The tiniest thing annoys me so much and this never happened before, I'm not sure if the current situation is to blame with not being able to socialize like we did previously and not being able to go out shopping when I feel like it, having to cancel weekends away etc, etc. I couldn't tell you how many times during the night I wake up and then struggle to get back to sleep and if I have a glass of wine to help me relax this just makes sleeping 10 times worse. Food..if I didn't have to eat it I wouldn't eat it. I used to enjoy food but not anymore, I know I have to eat but I don't enjoy it and when I do eat I just walk, run or exercise more. What annoys me the most is that I know there are people out there who are a lot worse off than me and I should be grateful for everything I have and not feel like I am feeling but how do I stop feeling like this??
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 ?
