Any other young Manitobans out there??

Hi Ladies - Thinking of you all and keeping you all in my prayers. 

I am enjoying having my daughter home.  We have had some retail therapy which I enjoyed.  Winners on Pembina is amazing.  

I had my reconstruction surgery (part 2) yesterday.  So, dealing with getting the anesthetic and morphine out of my body.  Virtually no sleep last night.  Can't see what the results are as I am bandaged up and have 2 drains.  They are only in until Monday.  Yahoo.  

It has been a revolving door at my house.  One daughter came home and the 18 year old left for a good part of the summer to Red Lake.  She came home yesterday but is leaving again tomorrow.  Hope to get some quiet time with her before she runs off again.

I think your anger is normal.  Not that saying that makes things better in any way but I think, still a truth.  Everyone has to do what is right for them in any given situation.  I believe you will just instinctively know what you need to do at every turn. 

I've never been one to do anything like anyone else.   I function on a curious blend between logic and instinct!  There are things you need right now but you probably don't even know what they are.   I did learn that all that really matters is relationships with people.

Think back in your life and contact people.  Some you won't be able to find, some you will but will be 'afraid of you' because you have cancer and some will surprise by stepping up to the plate for you - that's what happened to me.

Look at all your current contacts and contact them - just to say Hello.  You will be surprised (at least I was) at who steps up to support you and you'll probably be surprised at who 'leaves you'.  Somewhere on this website is something like this: 'The one who holds your hand and says all the wrong things is more dear than the person who won't take the time to see you'.  So true.

Have you talked with any of the Social Workers at CancerCare or through the Breast Health Centre?  There might be something for you there.  Have you seen the 'Cancer Psychiatrist' guy?  Maybe there is something for you there as well.  Maybe a group situation is for you?  There are many groups you can join at CancerCare although I wish they ran year round.

I know test result time is tough.  They say it's tough on everyone but it's hard to think of 'everyone' when you are the one waiting.  My last scans were towards the end of May and I went to CancerCare early June to get my results.  The night before my clinic appointment I swore I was having a heart attack.  I have to say, I'm at my absolute worst down in the Clinic's.  My maturity level is about at age 8 and my ability to comprehend is at about an age 6.  It's rough down there but I found another saying on this website that is so true......'When you are going through hell, keep going'. 

My advice would be to do what instinct tells you do and be aware of the here and now.  Take several moments out of each day to look at the sky, breathe in the aroma of the grass/flowers, really listen to the rain, listen to the thunder, take a camera everywhere you go and take pictures of every day things - load the images on your computer and see the beauty in each shot, hold your child in your arms and watch TV, ask your older children what they remember from their childhood - it will help you decide what to do now.  Also, enjoy being hassled and peeved.  Some people will just barrel on and ask you to do this and that and the other and you don't feel like it, and don't want to engage yourself in any such task, but summon all your patience and do as they ask because to disengage ourselves is not to live and the reason we are here is to live - which means experiences that are good, bad and sometimes downright ugly, but here we are!!

There is room for anger but it needs to be set aside for living.  Let the anger out in the shower or moments here and there, but don't let anger steal your life.  

Search for what you are looking for and never give that up.  Also, if even remotely possible in the course of a day, even if it takes until 4pm to do so, put on some lipstick, maybe some eyeliner..  Sounds lame but do it and see. 

P.S. I was so happy to see you last week.  Thanks for stopping to say hello.  You DO look terrific!  That hat is Uber cute!

Hi Melanie,

 So sorry to hear about your progression. I too had quite the set back last month. I had 3 severe nose bleeds ( lost 1/2 blood in my body hgb: 70) and my liver now has ascites(fluid build up). They did a liver scan and it shows approx 80% of my liver is cancer.  Shit!!! Shit!!!  I looked about 7-8 months pregnant, I was very short of breath and honestly felt like I was going to die.  I have extentive bone cancer everywhere ( all of my spine) which means my blood can't generate as quickly.and I was in severe pain where somedays I wanted to die. 

They started a new chemo Vinorelbine, as Herceptin no longer works. 

I think I had ( and still have once in a while) the same anger as you do.   Yes, I do feel sorry for myself, that is ok to say.  Yes I do get jelous of healthy people, but I do wish harm on them.  Any make up commercials make me mad.  I felt cheated on as I had a relationship with my body for 45 years. I know my likes and dislikes, what makes me sick and healthy. So when cancer sneeked into my body without me knowing. I was shock. But why me??  God gave me a wonderful husband and 2 wonderful kids and a beautiful life. It was ok to feel angry, but I found I took alot of energy to stay that way, so I decided to stay positive and focus on life, love and life's simple pleasures and that seem to give me more energy then ever before.

I have been living with cancer for 9 yrs and I have been staying mostly positive through this challenge and believe it has carried me through. The mind is a powerful defence.. Even now, I have bouts of anger, but it doesn't last long because I'm saving my energy for my family.

Hi EJ & KJs Mom,

Young children pick up on facial expressions mostly.  They sense tension and worry and posssibly see the tears/fears. They understand boo-boo because they may have experience a boo- boo themselves. They do not understand the words Cancer, University,  bills,etc until it is explained to them which I feel they will not understand or remember.  I kept the "C" word away from my children and if they heard it spoken, I did not change my expression because they pick up on that.

As for other people " I made sure the kids were very occupied if the word Cancer needed to used on the phone,( I would always refer it to "my situation"" but most of the time people only mention the word Cancer once when they first hear about it, otherwise they ask how you are?

When my kids were a bit older and the cancer came back they were 11 and 8.  I told them "Mom has cancer" they were afraid.  I told them that I had cancer for a longtime before that and explained and said "Cancer is like a weed. It doesn't belong in  the grass. We sprayed  solution on it to get rid of it, ( that is like mom's medicine "chemo" I will lose my hair), hoping to get rid of it. But sometimes that darn weed is stubborn and the weed never really dies and new shoots come back that is like mom's cancer and we need more medicine to stop it again..  My kids understood that. 

I hope this help a little.

Take care p.s hoping the SNB comes back clear

Monique

Hello ladies,

 I was lurking here for past two months waiting for my results to come back. I am from Winnipeg,too. 42 years old and have a son of 6 years. I found my lump back in January but waited until beginning of March as my breasts were always full of lumps. Saw GP in March and was told it was nothing but for piece of mnd was referred for u/s. a week later they had cancellation and I had an u/s. Radiologist found that lump and one more very suspicious and told me tocme the following day for biopsy. Same day she sent me for mammogram as well. The next day she told me mammogram showed no malignancy but she would like to do biopsy on both lumps. 14 days later i was told both were cancers. I saw Dr. McIntish in April and Dr. Hayakawa soon after and decided to go with bilateral mastectomy with DIEP reconstruction. My surgery was May 4, SNB showed no node involvment. They found 3 cancers, one that I found 13 mm, one that was suspicious to radiologist 11mm,and one only 2 mm. All in right breast, left was one. I guess i made right decision although everyone though i was too drastical. ER/PR positive. No call from oncologist so far, so I phoned them and was told they are waiting for Her status.They said it was incoclusive and sent it back for FISH testing. Now is full two months since my surgery and I do not have any Tx plans. Dr. McIntosh suggested that most likely I would go on hormonal pills, but at the time she did not know about Her2 (I guess she thought it would be neg).

How long after surgery You saw oncologist, how long to wait for Her2? Do You pay for meds or is covered?

I am sorry it is so long

Hi DianeKS,

thank You for getting back to me. I am 9 weeks today post surgery and no problems. I was able to do whole range of motion with my left arm (noncancerous) by week 4. My right arm where SNB was done is now maybe 80% I can lift it straight up with minimal discomfort  but not full circle to the side. I am starting with physio next week. My wounds healed with no problems, but my surgery lasted more than 12 hours as flaps kept dying (Dr. H. realized during surgery I had clotting problems). I stayed in hospital 7 days, was on IV Heparin the whole stay and just finished Dalteparen two days ago (I was giving injections to my tummy once a day). Those injections were almost $700 and I would be able to get some money in return from my insurance.

I was using my sick days at first but now I am on EI and is not funny. Dr. H. gave me note until Aug.4 (that would be 12 weeks) and I would need to be for one more month on EI before my long term could start. That is why I am hoping to see oncologist before Aug 4.I do not know if I go back to work in Aug and start Tx in Sept or Oct if I would need to be on EI for 4 months again before starting LTD or is cumulative. Financially it would be really thight to do it again especially if now I only need one more month.

Are You now on Herceptin for Her2 pos? I was hoping with everything discovered early and node neg I could pass only with Tamoxifen (if turned ot to be Her2 neg). I guess they are not doing oncotype here in Canada to see if chemo would really help (apparently ER/PR pos but Her2 neg do not really benefit from chemo). So many questions.

Thank You for letting me know re: support group. I would need to check it out.

Are You following any specific diet?

Hello EJandKJsmom,

Congrats on the -ve SNB. 

You are correct in the fact that I forgot to mention that I had lmphovascular invasion within the breast tissue so they treated it as if I had a +ve nodes (similar to if I had 1-3 nodes positive).   I had to consult my records as I did not want to give you wrong information and it is hard to remember.  You think you will never forget but 4 years is a long time.

My recollection is that you can pay for the Oncotype test but I don't have any experience or know of anyone who has done it.  I seem to remember it being talked about on the Canadian boards here at some point.  Sorry I can't be more specific than that.  Sounds like you are looking at all your options which is great.  Frustrating that you are the one expected to do all the research though.  Keep asking questions,  let us know what you find out.

Mybails-hope you doing well after your first round...the countdown has begun!   Welcome here.

Nicola- Sounds like your surgery was a bumpy ride, congrats on getting through it.  

I never had any problems getting a note from my doctors for EI.  I'm sure if you called the office and spoke to Dr. H 's nurse S. she could help you .  The other thing you could do is call Breast Health Centre if you went through there and see if they could at least let you know if you have an apt. before Aug.  Once you are in to see an oncologist you should not have a problem.  In my experience I have not had any difficulties with Dr.'s notes for EI.

As far as any new diet, I did not change anything.  Just tried to eat a well balanced diet and occ. buy more organic.  Tricky to change drastically with two small kids 7, and 5.  Not impossible but I did not change much.

Diane

Nikola

  I am on chemo because of my age.  Even if you are HER2-, you may be given the suggestion for chemo.  My non-recurrence odds over 15 years goes from 52% to 83% with the chemo.  The type of chemo will be dependent on the HER2 results.  They are sent out to Toronto.

Hi Melanie I am definitely not one of the younger manitobans. Sorry to hear you have been diagnosed at such a young age. Your ONC seems to be either hated or loved (rateyourmd.com) but it is his bedside manner not his expertise that is in question. I was first diagnosed in 2006. Everything went one,two, three. Diagnosed June and on Chemo on July. This time we piddled around from June to December before I went on Xeloda. Don't know why but my Xeloda was paid for.  I got it thru Seven Oaks. Asked for a second opinion because everything had been progressing and 7 Oaks has only 1 ONC. Got transferred to St. Boniface to put on a trial. Too much progression. Just went on chemo In July BUT that isn't the point. The doctor refusing to cooperate with forms etc. is just plain b....t. Anyone in Canada can get 15 weeks off for stress on U.I. never mind cancer. I went on U.I. because of no sick leave then on CPP disability benefits after the 15 weeks. I stayed on CPP until I retired at age 65. My family doctor filled out a lot of my forms. The ONCs are so busy. As a cancer patient in Manitoba you are on the system. Any doctor with password and computer knowledge can access your CCMB records and fill out anything you need. The way to get another ONC is to ask for a second opinion. They can't turn you down. Avoid 7Oaks, Grace, Victoria etc. They have private oncologists and only 1 per hospital.. HSC McDermot Avenue and St Boniface are connected.

Hi Everyone - Just checking in to say hello

Monique - You are one incredible woman.  You know where to put your energy.  God bless you.

Diane - Congrats on finishing treatment.  Thinking of your sis.

Melanie - Hope you are getting plans in order to go to M.D. Anderson.  I felt better & more in control after I went to the Mayo Clinic in Rochester.  

 I understand that everyone is in there unique place as far as what they are physically able to do.  But, just wanted to make everyone aware of a clinic that the Running Room is having for breast cancer survivors.  It starts on July 30th and is free for bc survivors.  It is in preparation for the 5 km. Run For The Cure in October.  Just an fyi.

My thoughts and prayers are with you all.

Bev

Hi Nikola,

  I asked, but there werent' any at the time I started treatment.  Some people say that you are followed more closely if you are on clinical trials.  But it just depends on if you fit into their pt. criteria and if you want to participate after hearing about what the trial is all about .

 Maybe someone else will chime in with their own  experience with being on a trial. 

 Good luck with your apt., write all your questions down and take someone with you if you can so that they can take notes and help you remember the information the Dr. gives you.  Sometimes it can be confusing when they talk about %'s and options. ' If you do chemo  then your chance of recurrence is this , if you do antiestrogens on top or by themselves then the % is that ' etc.  

 Let us know how it goes, I'll be thinking of you this week.

Diane.

Hi Nikola - I am on a bisphosphunate trial.  It is a 3 year trial.  I received zometa infusions once a month for the 1st 6 months and then every 2 1/2 years for the remainder.  It is quite a promising drug  for preventing bone mets. 

Keep us posted.

Bev

Hello, I saw onc. this week and still very confused but made my decision. It has been 11 weeks since my surgery, they were waiting too long for my FISH and that put TailorX trial out. Cut off to be admitted is 84 days since surgery and they need 3 weeks to send my results out (not high priority). My onc. tried but no luck, no oncotype for me unless I pay by myself.

Initially, he told me to wait for oncotype (we thought I could get into trial) and then decide if chemo is option or not. Since that is out I decided to go with chemo (T/C X 4 every 3 weeks) followed with HT. I asked myself if I feel comfortable with HT alone (had double mastectomy) but not knowing my oncotype score made me uneasy. I want to do everything possible, like I decided to go with mast. He gave me 25% of recurrence, cut down to 16% with HT alone and down to 8% with chemo and HT. The program does not take into account mastectomy so % could be different and diferrence between HT and Chemo + HT not so huge, but one can never know.

I think if I made decision of HT alone I would wonder all the time if I did everything possible.

Apparently oncotype would be covered in Canada as soon as next year.

I hope everybody is doing fine and enjoying summer.

Nikola,

Have you called Genomic Health (Oncotype folks)?  My understanding is if you can't pay they may do the test for free, or for cheap.  I think it's worth a phone call.

Julia