First diagnosis and the waiting game
I wondered if anyone had the same experience as me. I was told my the GP that I had cancer over the phone. Apart from letting me know that it was an invasive ductal carcinoma she wasn't able to give me any more details (even though she had the biopsy report from pathology with her and it stated the grade of the cancer at the time).
Now I am a mother of 2 little boys (3/5 and 1 year old) and pregnant with another (getting induced next week to proceed with surgery the week after). The only thing that the GP did was organise an appt with a surgeon for a week later.
As I had tones of questions to ask (I was in shock and disbelief and just didn't have any information to go on) she gave me the number for the surgeon's office to see if I could get more answers there.
The phone call to the surgeon didn't get me anywhere. I never got a call back and had to endure a whole week of limbo land and googling with the little information that I had been given. I felt that this was very poorly dealt with as the first weeks are the hardest and not knowing can really play with your mind and mental state. I was a mess.
I can understand that surgeons and specialists are very busy but why don't they have someone in their team to deal with these situations. I didn't want the whole treatment unveiled to me, I just wanted to be assured that I wasn't going to die in the next few weeks or while waiting to see the surgeon. I felt like they don't care about the patient at that time. If the receptionist at least said to me that if I wanted to get more information while I was waiting on the appt with surgeon I could call someone that would really have helped me in that first dreadful week.
Adriana
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Hi
that is an awful way to be told - over the phone. I was told by the breastscreen Dr that I had breast cancer. this Dr was very caring, gave me info off the pathology report. Then I had to go to my GP for a referral to the specialist - she was happy to go through the report with me and also said that if I needed to call at any time she would be happy to see/talk to me even if it was just for some extra support. then my surgeon was very informative and helpful - making a very difficult time better. I feel for the way you have been treated as the first weeks prior to surgery were VERY emotional - I was in turmoil. I still have my times, and will during treatment too I know but it does not seem as traumatic while I wait for treatment.
Good luck - hope you get some answers soon.
Margxx
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I don't think anyone should be told they have cancer over the phone.That's terrible and especially so in your pregnant condition.Depending on where your surgeon operates,there maybe a breast care nurse you could see now?Perhaps you could ring the hospital?You don't normally get the full pathology results until about a week after your surgery.It is sickening when you first hear that cancer diagnosis.You wake up each morning and wonder if you dreamt it. I was an anxious mess until I saw my surgeon and got a surgery date.I was 47 the first time and my girls were 17 and 19.I can't imagine having little ones and being pregnant too-that is so unfair.But you'll do what ever it takes and you'll feel a little better when you have a plan and your questions are answered.I've had bc twice -2003 and then again in 2010- same breast and early bc each time.I'm fine now and majority of women with early bc survive and live long and well.You are at the scary beginning bit but your pink sisters are here to support you. Tonya xx
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Since seeing the surgeon I was given the details to breast cancer nurse who was great and very helpful and I have been in touch with a lovely Med Onc specialist so at the moment I am where anyone else would be. It was just the initial treatment that really hurt.
I guess I had a bad GP. She was someone from a medical centre and I went to her as I thought I had mastitis so wasn't too concerned about whom I saw. I no longer see her but boy I wouldn't wish it on anyone to deal with that the way I had to.
Now I am just getting my head around having a baby a month early, hoping that she will be ok and then in 2 weeks from now I have the lumpectomy and axilliary clearance and then like you said get the proper biopsy report on the whole thing and see what the future holds.
Very scary time all around.
Thank you for your replies ladies.0 -
I would call it a "Duty of care" and there must be a way to notify the Board of Medicine that there is a Medical person who is unprofessional and uncaring. Can you change doctor? My GP told me, and I hardly knew him. He didnt handle any of it from there on, the next person was the Surgeon, who is a female, and is known well in Launceston as being spectacular in her work ethic and abilities. Thank god I was here in Launceston when I got Cancer and not in one of the cities we have lived in. The care and consideration I had the whole way was outstanding. There are Breast Care Nurses, McGrath Nurses, Community Nurses, Cancer Council Volunteers, Free Counsellors, and luckily you found this website, BCNA for emotional support and information. I guess if nothing at all, the doctor should have said "You have cancer, now go talk to some one who cares!" (sorry I am stunned at you experience, it was rude and inconsiderate and unprofessional). Good luck from now on, ask us here, we will help! X Bel
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Hi Bel
Yes I have since changed the GP,still in the same medical centre but with more bedside manner. The initial GP also tried to make me feel like she was doing me a favour in finding me the surgeon. Really I couldn't believe it. I feel like telling someone so that no one else has to go through this.
I am now more informed and yes have been in touch with various organizations but I guess until after the surgery when we have a bigger picture I won't know what I will need.
I am also thinking of giving my surgeon some feedback about my experience and see if there is a chance to introduce a middle person who can deal with these situations in the future. Someone that one can talk to with compassion and care not clinical.
Of course I will do that after the surgery he he.
Adriana0 -
When you are in a good headspace,perhaps write a letter to the manager of the medical centre.It doesn't have to be a nasty one but rather constructive criticism that telling clients about a cancer diagnosis should be in person and not over the phone.They should have policies about such things and if they don't, then they should. The birth of a baby should be such a happy event but I am sad for you because your joy may be undermined by what's to follow.Can I ask where you live?-because there may be a bc support group in your area which may be of some help to you.Have you ordered your free "My journey kit" from this network?This information kit will get you up to speed.Many support groups are linked in with BCNA and are listed on this network.I run one in Kellyville,north west Sydney. It sounds like after your "botched up"start to this bc journey,a plan is coming together.Keep coming back here for support and my best wishes for a smooth delivery of your baby. Tonya xx
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Thank you Tonya. Yes I think you are right. I don't want the doctor sacked or anything but I think if she doesn't know any better then she needs to be told. I will do that. We live in Lisarow on Central Coast, just moved here from Sydney, Artarmon in December. And yes my husband actually got me the Journey Kit which is great and I am still reading it.
I also work for the Cancer Institute NSW and since my colleagues found out last week they have rallied around me and trying to find the best specialists in Central Coast for me. Travelling to Sydney to see specialists is not an option for us with a young family so I am hoping that who we have here will do the best job.
So for now I am goingto try and concentrate on delivering this baby safely next week and pray that she doesn't have any issues on top of everything else. Then we will tackle the bastard.
Adriana
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Hi
I live in narara - my specialist was Dr Sharon Laura and she has been so good - she is so thorough ( I now know every thing that is wrong with me lol) with many tests etc. She is in gosford. Would recommend her. My GP is in narara and also very supportive.
Hope all goes well for you.
Marg xx
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Yes dr Sharon Laura is my surgeon too. She is nice from what I have seen so far. Heard lots of good comments about her.
Who is the GP in Narara ? Does he/she take new patients? See that's the problem with CC too many patients and not enough doctors. We only moved in December.
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Hello Adrianna,
I am in wonder of you having your young family and a new baby only now having to get your head around BC.
May you and your husband enjoy the distractions your young family will give you during your journey. God bless you from Dorothy0 -
Hello again,
Sorry I have been quiet of late but since my last post I was induced to have my beautiful little girl (Annabelle) at 36 weeks. She is doing great. Feeding really well and growing fast. That was 4 weeks ago.
Since then I had one surgery (lumpectomy and axiliary clearance). That was pretty bad and I found recovery even harder as you are supposed to rest and take it easy but unfortunately I can't do that. I struggle with the fact that I can't pick up my one year old and can't do the every day things like bathing, changing nappies (don't miss those) dressing and putting to sleep. I can do some of these things with my older one though. The drain stayed in for 2 weeks which was a massive pain too. I got what they call "cording" from the axiliary clearance operation, which is very painful and restricting. Not to mention the constipation that you get from all the pain killers. I was beside myself.
Then I found out that I need to have mastectomy on that breast after all as they found 3 different cancers in the breast as well as not clearing the margins at the primary lump site. So that was last Thursday. Just when I got used to post surgery restrictions there comes another whammy.. I was a mess. Don't know about others but losing my breast was easier said than done. Only had 2 days to get used to idea before the surgery. I find it very hard looking in the mirror and won't be able to have reconstructive surgery for a year, until the treatment is over and I heal up. That is a massively long time. I really don't know how I will cope with that and not having my hair on top of that. I think I will feel like an alien. Are there any ladies out there that felt or are feeling the same?
But my question is how long do I have to wait post surgery before I can have my chemotherapy? Is it 6 weeks? I am meeting my Med Onc next week but really don't want to wait that long as I have already been delayed by 3 weeks with having 2 surgeries.My husband will have to go back to work at the end of June. He works in Sydney and I was hoping to have at least 1 chemo session down so that I can work out how I would feel during each session but if I have to wait 6 weeks then it's going to drag out to the end of June. I feel like I have waited enough already.
Adriana
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A lot has happened to you in the last 4 weeks.Congratulations on your new baby daughter Annabelle.I wish you could just enjoy her and not have all the other crap to deal with.I think 6 weeks is about the usual time that you start chemo after surgery.Well at least not before 3 or 4 weeks.They like you to be all healed.This is also the time when you'd get fitted for a prosthesis(6wks).I won't sugar coat it -I found it hard at first to look in the mirror and see my gnarled chest scar and my bald head.I thought I looked like the bride of Frankenstein! I felt like I lost my identity for awhile.You will soon work out what feels comfortable for you.I definitely felt more confident once I got the prosthesis and mastectomy bras.I also felt better wearing caps and hats and just couldn't flaunt the bald look.I've had 4 years to adjust to being lopsided but it doesn't mean I like it -just learnt to live with it.Blog back here with any questions.Losing your breast and your hair IS a big deal but you 're not alone and you will get through it. Big hug, Tonya xx
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A lot has happened to you in the last 4 weeks.Congratulations on your new baby daughter Annabelle.I wish you could just enjoy her and not have all the other crap to deal with.I think 6 weeks is about the usual time that you start chemo after surgery.Well at least not before 3 or 4 weeks.They like you to be all healed.This is also the time when you'd get fitted for a prosthesis(6wks).I won't sugar coat it -I found it hard at first to look in the mirror and see my gnarled chest scar and my bald head.I thought I looked like the bride of Frankenstein! I felt like I lost my identity for awhile.You will soon work out what feels comfortable for you.I definitely felt more confident once I got the prosthesis and mastectomy bras.I also felt better wearing caps and hats and just couldn't flaunt the bald look.I've had 4 years to adjust to being lopsided but it doesn't mean I like it -just learnt to live with it.Blog back here with any questions.Losing your breast and your hair IS a big deal but you 're not alone and you will get through it. Big hug, Tonya xx
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Hi Adrianna, keep up the good fight with all that has been heaped on you, your husband and young ones. I have found my grandchildren a real help in keeping me focused and distracted with childminding and babysitting the youngest 2.
I am going through pain and restriction from lumpectomy and Sentinal node biopsy. My breast surgeon says it is all down to radiation damage. Plan on asking more questions.
We pray that your cancer is gone now and the mopping up treatments begin. One of my girlfriends had her second surgery (due to not clear margins) in August and she didn't start chemo until the drainage tube was out. Also when she felt nauseous she found sipping ginger beer and sucking ginger sweets helped.
Keep your chin up dear girl x0 -
Hi Adrianna, keep up the good fight with all that has been heaped on you, your husband and young ones. I have found my grandchildren a real help in keeping me focused and distracted with childminding and babysitting the youngest 2.
I am going through pain and restriction from lumpectomy and Sentinal node biopsy. My breast surgeon says it is all down to radiation damage. Plan on asking more questions.
We pray that your cancer is gone now and the mopping up treatments begin. One of my girlfriends had her second surgery (due to not clear margins) in August and she didn't start chemo until the drainage tube was out. Also when she felt nauseous she found sipping ginger beer and sucking ginger sweets helped.
Keep your chin up dear girl x0
