new to all this-diagnosis, illness, treatment-just thought I'd introduce myself
Fiona2
Member Posts: 69 ✭
Hi there to all you lovely and courageous women who inhabit this site-
just thought I'd introduce myself though I have already posted a couple of times so some may be familiar with me.
Doesn't life change in an instant! I'm currently 55 yo and until a month or so ago I was a hard working medical practitioner, sole parent to a gorgeous 17 yo son (I understand that at times this could almost be a contradiction in terms, him doing the teenage thing and all), a road and hills cyclist, home renovator and a reader and music player in my private life. I remain most of these things though at current time I have given up my three jobs as I now submit to the whirl wind of treatment that is enforced upon us. Currently on day 2 of second FEC cycle so please bear with me if I drop in a few typos. Oh yes, and the piano playing and voice are also pretty feeble.
I can pretty much book end my recent medical hijacking by the recent Rio Olympics. On the saturday morning of the opening ceremony, my cycling buddy and I were heading out for a training ride ride for Around the Bay. We watched a little of the opening ceremony and I disclosed some anxieties to her about my recent discovery of a lump, my visit to the GP and forthcoming referral to a breast surgeon the following tuesday. 'Anyway' I blithely reassured her 'probably nothing to worry about. They are mostly benign'
Underneath, knowing the shocking history of this disease within my family, I knew I was not fooling anyone.
From the following Tuesday, I was immediately swept up onto the very fast moving medical train of investigations, diagnosis, given a week to sort out my work situation and finally watched the closing ceremony of the Rio Games in post op recovery following the insertion of a port with first chemotherapy scheduled for the next day. And throughout all of this time, functioning (barely) through a torrent of incessant tears, sleepless nights and feeling like I'd been hit by a truck.
My medical picture; small tumour (barely detectable on mammogram) but highly aggressive and (some) local node involvement, Stage 2b (I think), Grade 3, Oest +. Prog -, HERS 3+. A bit of a mixed picture from a prognostic point of view but I am remaining positive and actually feeling positive at a gut instinct level. However, i have a massive treatment plan ahead of me with FEC times 4, Taxol and Herceptin, Surgery and then ongoing Herceptin for about a further 12 months. It's going to be a long road even with all going well, obviously longer if I hit humps and road blocks along the way.
My oncologist and surgeon have been excellent and they earned my trust with the speed and seriousness of their response to my situation, the highly professional and coordinated way in which they work together and their well thought out plan of approach. I also liked them being a bit bossy and taking charge despite my being a medical professional myself. As such, i am more than happy to submit to their clinical plan with my full confidence in their expertise in this situation. Doesn't mean that I wont have some specific questions for them when it comes to the point of surgery because I am developing some clear preferences myself as regards my options and they will have to present a firm evidence based argument should they be seeking to convince me otherwise. All questions for further down the track and perhaps yet to be further influenced by my response to treatment and the outcome of genetic counselling.
So, currently trying to not have my life defines as being a cancer patient though it does take over a big slab of life. I'm trying to use and maintain my own strengths in the goal towards my recovery. Still get out on my bike when I can to maintain my fitness and flush that chemotherapy right through my system and at any lurking cancer cells, maintaining my yoga practice though it this stage it is much more meditation than postures which has really helped to calm the panic and the dread, playing my piano again when I can as this soothes my soul and finding I have a lot more opportunities to connect with family and friends now that I'm not flogging myself over three jobs to pay for my house renovation. Sure the bills are going up but I've had to put health (and survival) before finances and allowed these to go backwards for a while. I count myself as very fortunate to have had a well paid job for so long such that I can fiddle this with the help from the bank.
And I'm enjoying the opportunity to immerse myself in the coming of the spring. I have kookaburras in the garden, bluetongue lizards lurking in my garage, a local parklands with an abundance of wildlife and nearby biketracks to transport me off in all destinations, though a nearby coffee shop is currently my usual preference. These delights are all very welcome distractions away from the general blah feelings of the chemo and my constant shedding of hair. if i feel too blah, i just resort to the Boxsets, currently watching Borgen. Very good viewing particularly when seeking to be inspired by some female empowerment.
Anyway, enough from me by way of introduction. Very open, welcoming of thoughts, comments, impressions back..
Warm vibes to all,
Fiona2
just thought I'd introduce myself though I have already posted a couple of times so some may be familiar with me.
Doesn't life change in an instant! I'm currently 55 yo and until a month or so ago I was a hard working medical practitioner, sole parent to a gorgeous 17 yo son (I understand that at times this could almost be a contradiction in terms, him doing the teenage thing and all), a road and hills cyclist, home renovator and a reader and music player in my private life. I remain most of these things though at current time I have given up my three jobs as I now submit to the whirl wind of treatment that is enforced upon us. Currently on day 2 of second FEC cycle so please bear with me if I drop in a few typos. Oh yes, and the piano playing and voice are also pretty feeble.
I can pretty much book end my recent medical hijacking by the recent Rio Olympics. On the saturday morning of the opening ceremony, my cycling buddy and I were heading out for a training ride ride for Around the Bay. We watched a little of the opening ceremony and I disclosed some anxieties to her about my recent discovery of a lump, my visit to the GP and forthcoming referral to a breast surgeon the following tuesday. 'Anyway' I blithely reassured her 'probably nothing to worry about. They are mostly benign'
Underneath, knowing the shocking history of this disease within my family, I knew I was not fooling anyone.
From the following Tuesday, I was immediately swept up onto the very fast moving medical train of investigations, diagnosis, given a week to sort out my work situation and finally watched the closing ceremony of the Rio Games in post op recovery following the insertion of a port with first chemotherapy scheduled for the next day. And throughout all of this time, functioning (barely) through a torrent of incessant tears, sleepless nights and feeling like I'd been hit by a truck.
My medical picture; small tumour (barely detectable on mammogram) but highly aggressive and (some) local node involvement, Stage 2b (I think), Grade 3, Oest +. Prog -, HERS 3+. A bit of a mixed picture from a prognostic point of view but I am remaining positive and actually feeling positive at a gut instinct level. However, i have a massive treatment plan ahead of me with FEC times 4, Taxol and Herceptin, Surgery and then ongoing Herceptin for about a further 12 months. It's going to be a long road even with all going well, obviously longer if I hit humps and road blocks along the way.
My oncologist and surgeon have been excellent and they earned my trust with the speed and seriousness of their response to my situation, the highly professional and coordinated way in which they work together and their well thought out plan of approach. I also liked them being a bit bossy and taking charge despite my being a medical professional myself. As such, i am more than happy to submit to their clinical plan with my full confidence in their expertise in this situation. Doesn't mean that I wont have some specific questions for them when it comes to the point of surgery because I am developing some clear preferences myself as regards my options and they will have to present a firm evidence based argument should they be seeking to convince me otherwise. All questions for further down the track and perhaps yet to be further influenced by my response to treatment and the outcome of genetic counselling.
So, currently trying to not have my life defines as being a cancer patient though it does take over a big slab of life. I'm trying to use and maintain my own strengths in the goal towards my recovery. Still get out on my bike when I can to maintain my fitness and flush that chemotherapy right through my system and at any lurking cancer cells, maintaining my yoga practice though it this stage it is much more meditation than postures which has really helped to calm the panic and the dread, playing my piano again when I can as this soothes my soul and finding I have a lot more opportunities to connect with family and friends now that I'm not flogging myself over three jobs to pay for my house renovation. Sure the bills are going up but I've had to put health (and survival) before finances and allowed these to go backwards for a while. I count myself as very fortunate to have had a well paid job for so long such that I can fiddle this with the help from the bank.
And I'm enjoying the opportunity to immerse myself in the coming of the spring. I have kookaburras in the garden, bluetongue lizards lurking in my garage, a local parklands with an abundance of wildlife and nearby biketracks to transport me off in all destinations, though a nearby coffee shop is currently my usual preference. These delights are all very welcome distractions away from the general blah feelings of the chemo and my constant shedding of hair. if i feel too blah, i just resort to the Boxsets, currently watching Borgen. Very good viewing particularly when seeking to be inspired by some female empowerment.
Anyway, enough from me by way of introduction. Very open, welcoming of thoughts, comments, impressions back..
Warm vibes to all,
Fiona2
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Comments
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Welcome Fiona,
its not a group we want to join but we are a supportive bunch who will share and laugh and cry with each other as the need arises.
Learning to be kind to oneself is important on this path.0 -
Hi welcome! Seems an odd gesture when all of us are here through necessity not choice, welcome and I hope you find peace of mind within this network. Lots of info on the site and more from us . Yes it's a so and so. For you having medical knowledge is helpful.
My sage advice is listen to your medical team and listen to your body. Some days are better than others and fatigue is what I found to be the hardest.
Take care and hopefully the roller coaster is smooth. Sending a virtual hug from Christine xx0 -
Hi Fiona,
Welcome. Your home area sounds beautifully conducive to healing and relaxation, very necessary for mind, body and soul. Wishing you all the best and smooth riding with your treatment. Xx Cath
P.s. Can't remember seeing any typo's!
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Hi Fiona. I was able to access a trauma component of my life insurance which enabled us to pay out our mortgage and for me to take time off work without financial stress. Sometimes it's worth checking your plan out...same as super plans often have this...we just don't always think about it. Have not read much about her3 bc but know they are similar to her 2. I am Oes+ Pr- her2+ grade 3...stage 1...no nodes. I had a bilateral mastectomy with tissue expanders inserted and have just recently completed ACT-H. ..still on the Herceptin...but needing a break due to reduced cardiac output. Fatigue was and still is my enemy. I just try to do what I can when I can and try to get some joy in each day. ..somedays much more challenging than others. Hope things go well for you. Kath x0
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Thank you Ladies for your all of your generous and welcoming replies. It's great to know the support is out there along with advice and the wisdom of your experience. I look forward to being in touch as we journey along our paths supporting one another along the way.
xxx1 -
Hi Fiona, I liked your sentiment about not being defined by your diagnosis and admire the fact that you are continuing to do all you can to help your body and mind throughout this time. Wish I could play the piano, I think it would be a very soothing thing to do
Like you, I was HER2+ (as well as Oestrogen +) with lymph node involvement which meant surgery (mastectomy and axilla clearance) chemo, Herceptin and radiotherapy throughout much of 2012/13. It was an exhausting time but gentle seaside walks, light gardening in our bush garden (and just sitting watching the birds / wildlife when I was too tired), coffee dates with good friends and a bit of binge-watching old and new TV favourites became my way of keeping my sanity during that time. I found it hard not being in control of what was happening and have learned (still learning...) patience and acceptance. Hope your treatment goes as well as possible for you. Jane xx 0 -
Thanks Jane. Seems our diagnostic picture is somewhat similar. i forgot to mention that I do also have radiotherapy lined up as part of my treatment plan. I'd be interested to hear from you and Kath (PrimeK) as to what might have directed your decisions towards the surgical options that you chose. And also thanks Kath for the suggestions re finances. i will look further into these and do have an appointment with a superannuation financial adviser lined up.
I am soaking up the nature around in a therapeutic way. Loving the gentle warmth of the sunshine, the soft drizzle, the heavier rain on the window pane when I'm wrapped up indoors in a blanket, the little creek outside filling up into a raging torrent with each downpour. I have so much more time for this stuff now and feel fortunate to have it nearby to draw from.0 -
Hi Fiona again. I chose a bilateral mastectomy for following reasons :
- Family history on Father's side of 3 Aunts with ovarian cancer and a cousin. Knew also gene positive was found in one Aunt and her daughter. This Aunt had 2 primary breast cancers as well. I await gene result.
- Despite 10 years of mammograms (I'm 51) my lump was not detectable...I felt it. I found out I had very dense breast tissue. My concern was that recurrence or new primary could go undetected.
-My breasts were large for my frame 14E and even with reconstruction or lumpectomy. ... due to position 1/3 breast probably would go...it would mean considerable surgery to the other now droopy breast.
- Being her2 I knew from many readings that clear margins can be difficult and recurrence common. I told the surgeon straight up I wasn't interested in going down that road. Also lumpectomy would mean me Staying in Adelaide for 6 weeks...500kms away from my hubby and children. If course if node positive it would not have been a choice but to do it...not for me.
- I had immediate reconstruction with tissue expanders...almost fully inflated and using a dermal sling. I await changeover...my scars are that of breast reduction. .except no nipples. I opted no attempt to save as too close to tumour margin for comfort. My surgery was done by a breast surgeon and the bilateral and scar and type were at his suggestion. I am very pleased with the result.
Hope this information helps.
Kath
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Hmm, thanks Kath for sharing your decision making. I will give all of the above careful thought. Perhaps I need to keep my mind very open at this point as I explore and consider all possibilities, options and relative risks. Fortunately I have a some time to fully contemplate these things. Not sure how relevant it is to the whole picture but my lump which was not big to start with seems to have considerably reduced with the first chemo such that I can no longer actually feel it. I suppose that is a discussion for myself and the breast surgeon.
I am also intrigued by you saying that a lumpectomy would require you to stay in Adelaide for 6 weeks with the implication that that was not necessary with a double mastectomy. Is that correct?
Must confess, I am also a little intrigued as to where 600km from Adelaide actually is? Sounds very rural, remote, outback and possibly exotic?
Fiona0 -
Yes...Broken Hill. Lumpectomy is usually followed by radiotherapy. Mastectomy no...unless lymoh nodes then upper chest / undersrm would need to be. My lump was 1.9 cm. ..stage 1 or in new pathology T1. Sentinal nodes clear .
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Hello again Fiona, I had just turned 49yrs when I noticed my nipple had became inverted and that was the start of my very long ordeal. Despite regular checks and mammograms from 40yrs (due to lumpy breasts and my mum having had breast cancer) nothing unusual or sinister had shown previously. Turns out I had three tumours; 2 invasive lobular carcinomas, both oestrogen positive (and one of which was about 6cm) and a small but aggressive invasive ductal tumour, which was HER2+.
Although I'd originally had a lumpectomy, as the extent of the lobular tumours weren't known, or showing up on diagnostic tests, once the surgery and pathology came back and clear margins couldn't be achieved, I had to go back for a mastectomy, so no choice there! My sentinel node was also positive, hence the axillary clearance. I had 6 rounds of chemo (Taxotere & Carboplatin), 12 months of Herceptin and radiotherapy was recommended due to the size of the tumour/s and the fact some of it was sitting close to the chest wall. I finished active treatment in July 2013 and had a DIEP flap (tissue transfer from the stomach) breast reconstruction in 2014. My decision-making around treatment was very much guided by my medical team, although I did get a second opinion on the oncology side of things, but they were very similar in their recommendations. I had somewhat more choice with the reconstruction but given the radiotherapy treatment, it was always likely to be a tissue transfer procedure of some sort, so it was more a matter of who, when and how (public or private). My choice to go ahead with a complex reconstruction was questioned by a few, well-meaning people who were concerned about why I'd choose to put myself through more surgery, but it was a positive and pro-active thing that I could do to reclaim some of what was lost, particularly my battered self-image, and for me, it was the turning point in my recovery, but I am equally aware that it is not something others would choose to do. The important thing is that we are given the information and support to decide for ourselves what is right for each of us and our circumstances.
It has been a long road and very tough on my family - my children were 8yrs and 13yrs at the time of diagnosis - but I am grateful for the support I received both on here and from some absolutely wonderful people in my community (including some I didn't know well beforehand) that helped me through. Best wishes, Jane xx0 -
Hi Fiona - sorry for the circumstances that you find yourself here, but welcome
Just wanted to say your post reminded me of the importance of getting back Nature - thankyou!
I've been so busy tending to other things (health, family, moving) I'd forgotten how much I used to enjoy embracing & appreciating the beauty of Nature through outdoor exercise & photography.
I wish you all the best as you embark on this challenging journey. I think being pro-active but open minded about treatment options & asking questions - all of which you are doing, is half battle. Take care.
Mel xx
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Thanks Mel. Yes, I hope you find your way back towards your own love of nature as a healing source. The little creek down below that's now bulging and roaring with recent rain is lifting my spirits. And this is in inner Melbourne which just goes to show that we don't need to travel far to find and embrace it.
Fiona x0 -
Wow and thanks Jane for sharing your long and challenging story. What a tough road you've been through and I wish with all my heart that it's now all clear ahead of you. These are very complex decisions that we need to make to give ourselves the best outcome, both in recovery and towards reclaiming our best sense of well being which of course includes our body image. I hope to use my current time wisely, seeking, absorbing and processing information, giving due weight to the guidance of my specialists so that my own issues are resolved with clarity and informed judgement when the time comes for me to make my own surgical decisions.
Fionax1 -
Dear Kath, your mention of Broken Hill made my heart skip a beat as it brought back the memory of a fun and happy road trip to there with my son a couple of years back via the Hattah Lakes, Mildura, Redcliffs and through the desert. We loved the light, the art, the sculpture park and lots more. My son would head back in an instant. definitely exotic!
Ok, I'd forgotten about the radiotherapy aspect though a little surprised to hear that that is not available in Broken Hill. Just goes to show how issues of family and geography can weigh so deeply into the options we find available to ourselves. Though I sense from the tone of your posts that you are very comfortable with your assertive approach to treatment.
Hoping to visit Lake Mungo on my next trip out your way.
Fiona x0
