4 Years and Counting

Hi Anne, firstly, my apologies for not getting back to you sooner. I've been away looking after my parents, who were both unwell and they don't have any computer access.

Like Kath, I think you need to know that it is perfectly natural and normal to be anxious when questions about whether chemo would be beneficial or not, and hopefully the oncologist will give you the information and guidance you need so that you feel more confident with the next steps. You could ask the oncologist why your surgeon is suggesting chemo would not be necessary to try and better understand your situation. I actually got two oncologist's opinions and although they slightly differed regarding the drugs and doseage needed for chemo, they were essentially very similar in recommending chemo (and Herceptin for the HER2 positive tumour) so I felt more knowledgeable about proceeding with that step (although no less anxious about actually doing it). 

In the first 12 months to 2 years after my treatment (and certainly throughout it) I was very anxious about recurrence, and although that worry has not gone away, especially during follow-up scans etc it is not as consuming as it once was. Given you are on anti-anxiety meds, I would certainly include your concerns in your discussion with the oncologist and they may suggest increasing your dosage, just for a short while if they think it may help. Speaking to a Counsellor, joining a support group or attending an Encore (exercise program for breast cancer patients / survivors) may be just as valuable though as sometimes just meeting others who are going through / have been through similar treatment can be very therapeutic and a great way to not feel so alone with it all. I really enjoyed the Encore classes as I was able to meet other ladies in a relaxed exercise setting and just chat informally about our varying experiences. I have actually been twice: once during treatment and recently when I needed a bit of motivation to get exercising again and improve my lymphodoema.

Anne, I don't think I have any magic formula for getting this far along. I think we are all very fortunate that survival rates have skyrocketed in the past decade as better, more targeted treatments have come on board and this is something I needed to keep reminding myself when I'd slip into those darker thoughts. Kath's suggestions about developing an exercise program are very sound. It's important to do what you can manage around working full-time but I do understand that motivation can sometimes get the better of us. My husband has recently been given a Fitbit and he finds this a great motivator and has improved his fitness level, which is a great thing given that he is prone to episodes of depression. Am thinking I might need something similar to help me :-)

Hope this helps a bit, but please feel free to pm me or to post on here. This online community is very supportive and was a great help to me, especially during my reconstruction. 

Best wishes Anne, I hope that your appointment with the oncologist goes well and helps to ease your mind a bit. Hugs, Jane xx

My pleasure Anne...be kind to you. Think of the exercise as healing your mind and body...just take it slow as it really takes time for energy to return to levels before chemo,   never mind anither surgery. Ksth x

Hi Kath

Yes I have had thoughts about seeing a dietitian, exercise physiologist and counsellor - trouble is which one first - my head is spinning wondering when I will fit each appointment in whilst trying to hold down a full time job!

Priority maybe the exercise because of the immediate benefits - I have an exercise bike and dumbbells at home . I feel I am just being a bit cautious/lazy with the fatigue and it being not long after the operation...I did start an exercise program in February through the Cancer Council for 12 weeks but unfortunately I didn't make it to many sessions because I was going through chemo at the time and my legs kept giving out and I had some dizziness too...

Ah well - I am feeling a lot better in the past couple of days and with all the support here I feel more inspired to take action :)

Thanks for all your helpful advice

Anne

x

OMG Anne...we would all be freaking out waiting to find out what's  next. Your f/u appointment with the oncologist will help with that.

Things that have helped me:

I saw a dietitian as rapidly gaining weight due to inactivity (not able to work on chemo) and exhaustion so very poor good choices during the day. I was living on cheese and crackers and toasted sangas...as that's  all my tastebuds wanted and my energy allowed. She gave me some really good nutritious shelf ready practical tips that I have taken on board and have at least stopped gaining weight.

As to exercise managing that is doable when working full time but you may need to build up to it...after all you haven't long finished treatment. Idea is to do it in 10 min sessions. You could eventually do x 3 sessions which is 30 mins a day. 10 mins before work. 10 mins at lunch. 10 mins after work. A fitbit it a great motivator or something similar. You could see an exercise physiologist who could work out a strength program for you at home. Couple of dumbells, a step and your own body is probably all you need...and most could be done watching TV.

The exercise can really help with anxiety...as it burns off some adrenalin. But it may be beneficial to perhaps see a counselor to talk through things if it doesn't  settle.

Hoping things become clearer for you. My mastectomy was done pre chemo so really there is no way to know the tumour response in my case.

Thinking of you. 

Kath x

Hi Jane

I am reaching out to you because it seems that you are very similar to myself in your cancer diagnosis and positive node involvement. Although mine didn't involve IDC as well as ILC my post op results revealed 1 largish tumour and one smaller tumour both ER+ PR+ still in the breast  after five rounds of chemo. Plus a 1 cm tumour was found in the one sentinel node removed when I had my bilateral mastectomy and reconstruction op in May this year.

Before I go on though,  I am so glad and happy for you that you have reached the four year mark since your diagnosis. Fantastic news and I can see that you have been doing things you thought may not be a possibility at the time of your diagnosis/treatment. AWESOME!!

I am hoping for some sort of inspiration/advice/reassurance as since my post-op consultation with the surgeon I have been in a complete state of anxiety and going through some real funky moods. Have been on anti anxiety meds for 10+ years so I may need to increase my dosage but before the cancer diagnosis it was very well controlled...

At my first post-op consultation I was told by the surgeon that I did not respond to chemotherapy and that I may need further alternative chemotherapy treatment. Later seeing the oncologist he stated that no further chemo would be necessary but that was before my second operation to remove the axillary lymph nodes.

Got the results for the additional nodes removed last Thursday and had one positive node out of the six removed. 

At the next follow up the surgeon again stated more chemo may be required but speak to the oncologist for further info. He also reiterated his view about the original chemotherapy not working.....

I began freaking out again - internally because I tend to bottle things up and almost pretend to myself that I am not worried or concerned.

Anyway, my thoughts at this moment in time are that you have made it through four years and screw what the surgeon is saying, the oncologist is the one with the real knowledge/information on chemotherapy and hormonal therapy. I see him on Monday so I will get some further clarification then...

In the meantime, what I really wanted to find out was what have you done to keep healthy since completing your treatment?? I am worrying so much about secondaries and can't seem to get these thoughts out of my mind - is this common at this stage of the game??

I work full time and find it really hard to fit in making healthy meals,  keeping active and maintaining good energy levels. My anxiety seems to have escalated further because I am worrying about eating the wrong thing, not doing any exercise (because of feeling flat/down and no energy since my op on 15th July, not to mention the tactless remarks of the surgeon.  I also have very painful cording after first and second op - worse since the lymph node removal).

I have cut down on practically all of the naughty things I used to consume before my diagnosis and have actually lost around 8 kilos since diagnosis and my BMI is within a healthy range. I now eat reasonably well trying to incorporate green veggies with most meals, very limited alcohol but I haven't managed much exercise in the past few weeks. Certainly I am not active daily, working in an office 40 hours per week. Perhaps I should try getting on my exercise bike in the evenings and give that High Intensity Training a go?? I find it very hard on my legs though....

I am doing some aromatherapy when I can to try and calm me down which helps a bit with my anxiety.

Sorry for ranting on - I am probably not making any sense. It's all in my hands and I need to start exercising to increase my energy. When to fit it in though.....

Many thanks for listening and hope you may have some suggestions before I worry myself into getting more cancer....

Thanks

Anne

Hi Anne, I'm not sure any of us ever totally get over the fear of recurrence. I still have times (usually leading up to scans or if I have some other ailment which I immediately catastrophise!) when this happens but I'm hoping as time goes on it becomes less of an issue. I tend to try and distract myself with lots of other activities (seeing friends, doing things with the kids, writing etc) just beforehand. I sometimes also write out my fears in a private blog just to get it all out.

I was a bit worried that I'd feel cut adrift when all the active treatment had finished but the regular checks / scans etc carried out by my oncologist and surgeon give some reassurance that all is ok.

Moving on from treatment (I'm also on Tamoxifen now) has been a bit of a struggle, particularly mentally, as so many things have changed and I'm still coming to terms with my "new normal" (whatever that means). I'm at the point where I'm about to go and talk to someone about these issues and hopefully make some sense of it all.

Lots of people will give their 2 cents worth about what you should be doing - and there is definite merit to improving diet, increasing exercise and cutting back on alcohol - but I don't believe these things don't need to be drastic changes as most people won't keep it up. I have cut back on my wine (but I still enjoy a glass or two a week), reduced my coffee intake, try to walk or exercise (gardening / swimming etc) most days (even through treatment) and am working on continuing to improve my diet (although it was quite good pre-cancer). I also got a lot out of the YWCA's free 8 week exercise program, Encore, which is specially designed for women with breast cancer and combines land and water exercise with sessions on nutrition etc - it was also a good place to meet others and chat about issues (if you wanted to) - check out the YWCA's website for details. Finding a good physio that can help with some of the other issues that have arisen (lymphodema, spinal realignment due to single mastectomy etc) was helpful. Also, my reconstruction in 2014 was a positive turning point for me, but of course this may not be everyone's cup of tea :-)

Best wishes for the remainder of your treatment, it is an intense and exhausting time so take it easy and don't worry too much about other people's (no doubt well-intentioned) advice. Jane xx

Hi, thanks for sharing. It's nice to know that there is life after BC!! I got diagnosed last October (lumpectomy), then mastectomy/reconstruction, chemo and now about to finish radio. It's been such an intense time and I'm not really sure how I feel about getting to the end of it all (I'm still on herceptin for the rest of the year and tamoxifen for many years). I do feel a bit anxious about what happens next.

How do you get over any anxiety about recurrence? I've been feeling a bit flat and just not sure how to work out what to do next. I feel like everyone keeps saying I have to change diet (no sugar!), no alcohol, more exercise etc etc (so I am totally confused about everyone on this forum talking about those pink buns and having another glass of wine!!). 

I'd be interested in your tips on how to manage post-treatment. I imagine there must still be a fair bit of anxiety with future check-ups.

Cheers, Anne

Woo Hoo! Happy dance!!

Thank you Jane I am pleased to report that everything was clear and my surgeon is very happy with me. ??

I know, go me! Thanks Brenda, hope you are doing well xx