The waiting game
Hi,
My name is Carole and I am 68, was diagosed with breast cancer 16 Feb 2012, I have 2 invasive ductile carcinomas, 1 is a grade 2 and the other grade 3, a biopsy to the lymph node was also positive.
I am going through the public system and have found all the heathcare workers to be wonderful. My surgeon strongly advised me to cancel an overseas trip as the surgery couldn't wait - needed to be done with 30 days.
All such a shock as I know you can all understand, plus a huge disappointment at having to cancel my travel plans. One week before my surgery date I was informed that it had been postponed a futher three weeks - in fact on the day I should have been retuning home from the US. Was the 30day limit for definite health reasons or to ease some of the mental anguish attached to such radical surgery?
Cancer is such a stressful situation, I keep wondering whether this delay is affecting my prognosis in the future, or will it not have any affect at all, maybe I could have enjoyed my trip with plenty to take my mind off what layes ahead, instead of the emotional wreck I have been just waiting and not knowing.
Comments
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Hi Carole
Welcome to the site. I'm sure you will find it extremely helpful as you work through this very difficult time. There are so many amazing women in this site at various stages of their journey reading to reach out, hold your hand and support you through this difficult, frustrating journey.
I was diagnosed with multiple cancers of 3 types in both breasts in October last year. The surgeon I was advised to see was on leave and I had to wait 2 weeks to see her. She said I had up to 6 weeks to decide about my surgery without her worrying about my outcome. I had already discussed my pathology with the local breast care nurse and knew I would need a bilateral masectomy, chemo and radiation. My surgeon was happy to operate the next week as I was keen to remove the cancers as quickly as possible.
The waiting is one of the difficult parts... Waiting for pathology from masectomy and sentinel nodes. I then had a bilateral axillary clearance and waited again for the results. Then waited for oncologist appt which with Xmas wasn't till early January. Waited for chemo to start etc etc. it's hard to not worry that all the delays won't affect your outcome. I think you need to put your life in the hands of your care team which is very difficult and trust them completely.
Carole its a challenging time as you wait for your results and treatment plan. It seems impossible in those first few months that you will find the strength to get through but you will... Put yourself first, cry when you need to, jump on here and share your story and find comfort in talking to others who truly do understand.
Take care
Mel xxx0 -
Hi Mel,
Thanks for your reply and sound advise. I will be having my surgery tomorrow - also bilateral - plus all the lymph nodes and some muscle from my left arm. I am feeling better now than I have for the last month, knowing that the healing process is about to start, it might be a long road but that's OK I can handle that, I take the first step tomorrow, the waiting is over! I have a great Surgeon and fantastic breat cancer nurse, both radiate confidence.
I'm sure that there will be more frustration ahead, the waiting will probably always get me that way, I can face anything but that.
I know that I will have to have chemo but am not sure yet whether they will be able to give me radio therapy. I suppose the next herdle will be waiting to find out how many nodes are affected, about two weeks I believe and understand it may be a couple of months before chemo.
You have certainly been part of the waiting game yourself. I'm note sure what "bilateral clearence" means...is it the removal of the nodes from both sides? I am guessing that are still undergoing treatment, chemo and/or radiation, so hope that it's not affecting you too severally and that you have plenty of practical support. It is a challenging time, we have to face each ones as it comes, have faith and trust in our medical team, as you say.
Please let me kniow how you are progressing, you are my first contact - so thank you again.
Carole xxx
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Hi
Bilateral clearance is both sides. I had 6/21 and 2/21 nodes involved... Not the greatest news but not the worst.
I have had 4 cycles of AC chemo at 3 weekly intervals that started on Friday 13th January. I had my second of 12 weekly taxols today. I will then have radiation to my left chest wall the side that had 6 cancerous nodes and my left neck due to chance cancer had spread to nodes in my neck.
I will be thinking of you tomorrow as you have your masectomy and node removal. I remember how scared I was but so relieved that it was over. I have no regrets knowing I've taken the best choice to give me a positive outcome.
I had my surgeries separately and stayed in 3 nights with masectomy and 4 nights with node clearance. I had my surgeries in private hospital and chemo is through public and I have a great oncologist and nurses. I see my surgeon tomorrow for my 3 monthly check up then will go to 6 monthly visits. I am also getting a referral to have genetic testing done for the benefit of my 21 year old daughter.
My thoughts will be with you and I look forward to hearing from you when you are up to it.
Take care of yourself, listen to your body and rest when you need to. You will feel tired after a few days and may need a nanny nap or two.
Tell your team if anything doesn't feel right to you.... Trust your body and your instincts.
Trusting my gut feeling probably saved my life... I had a dream to have a mammogram... I listened, called and made the appointment and was diagnosed the same day. I was 42 and had no lumps or bumps.
Wishing you all the best for tomorrow... Sending you lots of hugs.
Mel xxx
Feel free to add me as a contact. I'm here if and when you need me
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Hi Carole, I just wanted to say 'welcome' and wish you all the best for your surgery. Will be thinking of you.
Di xxx
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Hi Mel,
I was discharged monday afternoon, but this is the first time I have been at the computer.
As always I had a bad reaction to the anesthetic so prefer not to remember the 4 days in hospital, I felt great for the first couple of days at home then seemed to hit the wall, I have had to have an afternoon rest the last couple of days, feels so strange but I have felt the benefit. I will see my Surgeon on Tuesday, get the pathology results and discuss whatever treatment they have planned for me - also get rid of these drains, I forget that I am attached and move off without them but don't get very far!
You have had a far more traumatic time than me, to have to go back in for more surgery must have hit you very hard, however of course it was the only thing to do and now the long road to recovery BUT how lucky are we that so much time, effort and money has been spent to make such huge steps forward in the treatment of Breast (and all) cancer, no matter how unpleasent it is we know that it is our lifeline so have to hang on tight. I know that I have not experienced it yet and am sure that I may curse it at times but have faith in the outcome and I can tell you feel the same.
keep listening to those deams!!
love Carole xxx
ps: being almost computer illiterate, I'm not sure how to add you as a contact - oh! the shame to have to admit my shortcomings!
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Hello Di,
Thank goodness the surgery is over and I am home, now just waiting to hear pathology results and treatment plan.
thanks for your good wishes
love Carole
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Hi Carole
It's great to hear from you.
Sorry to hear you had a reaction to the anaesthetic... I hope you are feeling better now.
You can tick surgery off your list and soon you will have your results and learn where you are off to next... The waiting is dreadful.
Im glad to hear you are listening to your body and resting. I was great for a few days living on adrenalin I think then suddenly I was finding I needed a rest sometimes mid morning. I just had to listen and give in and I'm sure my recovery was better because if it.
Reading your message I remembered my first appointment at the oncology dept to meet my oncologist and discuss chemo. It was as if there was a physical barrier at the door stopping me from entering... If I entered I became a " cancer" patient and I didn't see myself as one.... It wasn't that I didn't acknowledge I had cancer... I wasn't sick and didn't want to be a patient. That day sometimes seems so long ago... A time when I was overcome by tests, appointments etc. Now it is so much easier.. It has just become my life right now and I just get on with it... You will feel like that soon enough.
I had chemo number 7 on Thursday. Next week I will be halfway through my chemo and that feels great... Bring on radiation
My thoughts are with you and I'm sending you lots of healing hugs.
Mel xxx
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Hi Carole -- no shame at all, everyone has questions when they first start out!
To add Mel as a contact, just click on her username at the top of the comment she left (that will take you to her profile page). Then on the left side of the page, under her profile pic, you'll see a link labelled 'add as contact'. Just click on that and it will give you a screen where you can write a little message if you want, and click send. Have a try with my username if you want to practice -- it's not too hard once you know how. Di
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Hi Mel,
Sorry it has taken me so long to reply (in fact read my messages), I think it is probably is a sort of denial as at the monent I just feel that I am only recovery from the surgery, radiation therapy .. every day for six weeks, great ... doesn't start for another month or so and I haven't seen the oncologist etc. yet, I don't have to start thinking to heavily about whats to come. 3/19 lymph nodes were affected - thank goodness they were removed at the same time as the mastectony.
I am starting to climb the walls here, my daughter and a couple of friends have taken me out but it's not the same as just getting in the car and driving to where ever you feel like going!
How are you coping with the chemo ... any nasty side effects? will there be a break before you start the radiation? My cancer is positive to hormone receptors - so my surgeon said it will be a three pronged attack but as I said I am still waiting on the details'.
"Bring on the radiation" .. what a great outlook you have, I only hope I will be able to follow your example.
Take care, I hope you are feeling OK.
love CArole
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Hi
Hope you are doing ok
I've just seen my oncologist today for my fortnightly checkup and she said she would like no more than a two week gap between my last chemo ( number 16 scheduled for 7th June but who's counting ) and radiation starting. The quicker it's all over the quicker I get back to work. I miss my 15 toddlers that I look after each day at the preschool that I work at. They will all have changed so much before I get back to them.
Touch wood my weekly taxol is alot kinder to my mind and body than my 3 weekly AC chemos were. I've had aching bones, bleeding nose and upset tummy that strikes every night but it's all doable. I'm finding fatigue is becoming a real issue. I started a course last week so that is keeping my brain active and also keeping me in the real world where day to day stuff doesn't revolve around bc.
I hope you get the answers you need soon
Look after yourself
Mel xxx0 -
Hi
Hope you are doing ok
I've just seen my oncologist today for my fortnightly checkup and she said she would like no more than a two week gap between my last chemo ( number 16 scheduled for 7th June but who's counting ) and radiation starting. The quicker it's all over the quicker I get back to work. I miss my 15 toddlers that I look after each day at the preschool that I work at. They will all have changed so much before I get back to them.
Touch wood my weekly taxol is alot kinder to my mind and body than my 3 weekly AC chemos were. I've had aching bones, bleeding nose and upset tummy that strikes every night but it's all doable. I'm finding fatigue is becoming a real issue. I started a course last week so that is keeping my brain active and also keeping me in the real world where day to day stuff doesn't revolve around bc.
I hope you get the answers you need soon
Look after yourself
Mel xxx0
