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100 days til surgery? Is this normal?

100 days til surgery? Is this normal?

Posted by LoveSwimming on Feb 13, 2019 12:45 pm

I have invasive ductal carcinoma (breast). They think it is early stage. I found the lump in early Dec 2018. I am scheduled for lumpectomy March 13th. Is it normal to wait 100 days for treatment? I have been reading how the longer you wait, the worse the outcome over the years. My other fear is that I will need chemo simply because I had to wait so long.

Any thoughts?

Re: 100 days til surgery? Is this normal?

Posted by Lacey_adminCCS on Feb 13, 2019 2:19 pm

LoveSwimming‍ 

Where are you located?

Re: 100 days til surgery? Is this normal?

Posted by LoveSwimming on Feb 13, 2019 3:08 pm

Located in Toronto. Lump found early Dec. Diagnosis given to me early Jan. Surgery Mar 13. 

Re: 100 days til surgery? Is this normal?

Posted by Runner Girl on Feb 13, 2019 3:15 pm

That seems like a really long wait.

I'm in Calgary, I had my biopsy results and diagnosis May 7th, I met the surgeon May 15th and had surgery May 23rd. It was a whirlwind, but my cancer was Grade 3 - aggressive, so the surgeon wanted to remove it quickly.

Re: 100 days til surgery? Is this normal?

Posted by Kims1961 on Feb 13, 2019 3:22 pm

LoveSwimming‍  I will attach the wait times document from Cancer Care Ontario - another informative website - although I find it not so user friendly.  I think the time frame starts from the day you are diagnosed to surgery.  I found my lump in August - my doctor then assessed it - sent to Breast Assessment Centre in Sept -diagnosis confirmed early Sept. and surgery was mid Oct.

I was worried about time frames as well but was assured that it was good that it was caught early, tumour was relatively small and not causing any other health issues. For me, it seemed that the decision to have chemo had more to do with whether they were able to get clear margins after removing the tumour and the pathology of the tumour.  Since I was HER2+ and did not have clear margins - chemo was definitely in the cards for me - rather than the delay to surgery.  

I also don't think it's unreasonable to contact your medical team and ask about the wait time.

https://www.cancercareontario.ca/en/guidelines-advice/types-of-cancer/3211

Glad you have your date. Hope you are able to get into a pool 🏊....I'm busy shovelling the frozen water😉. Kim

Re: 100 days til surgery? Is this normal?

Posted by ACH2015 on Feb 13, 2019 3:47 pm

LoveSwimming‍ 

I noted you said that you found  a lump in early December 2018.
 
You’ve updated us that you were diagnosed early January 2019 and surgery is scheduled for March 13th. It’s just about 70 days since diagnosis. But we don’t know how much involvement went into your specific treatment plan, consults, tests, tumour boards etc... before you were given your surgery date.
 
Surgical wait times can be accessed from your hospital – or go to the MOHLTC website and plug in your specific surgery. It will give you stats about optimum wait times Provincially and in that hospital. Its also based on the urgency scale your surgeon assigns to it.
 
Other factors:
 
The back log at your hospital
 
The # of available surgeons, surgical O.R.’s sufficient RNs to assist in O.R. or take care of you in a recovery bed, availability of recovery beds etc... Sad but true.
 
The schedule of your surgeon (how much O.R. time they have available based on their allotment) and the ability of the surgeon to trade surgical O.R. times with another doctor to accommodate a quicker surgery.
 
You are still a month out from surgery. Its never wrong to ask your surgeon “why” the date is what it is, and what factors are involved. Asking if the time frame may cause further issues for you in treatment and recovery is worth while. If the answer us yes – advocate as best you can to obtain a sooner O.R. time.
 
There are a lot of factors most of us don’t consider. Been there, and I hope this helps.
 
Keep well
 
ACH2015 – Andy.
 

Re: 100 days til surgery? Is this normal?

Posted by LoveSwimming on Feb 13, 2019 3:49 pm

Thank you so much for your responses. Kims1961‍ , thank you for the CCO document. That was actually really helpful.
Per the document on page 19, I figure I am in urgency category III so I should be getting surgery within 42 days. I will actually be getting it within 41 days (according to how they count the days from consult - decision to treat - surgery). If so, I am one day within the recommended time frame. Ugh. Okay I will try to calm down that I am not OVER  the limit... 

Thank you thank you thank you for walking me back from the edge.
But still...
This nasty little thing in my breast is sitting with me while I type this message. It eats dinner with me. It drinks my wine. It watches Netflix with me. I tuck into bed with it at night. My cat even tries to knead it with her paw when she cuddles at night. I just want it out and fear it is having a party in my breast and sending out friends to the lymph nodes while I wait. This waiting is terrible. But thank you all for your help. 

 

Re: 100 days til surgery? Is this normal?

Posted by Brighty on Feb 13, 2019 5:15 pm

LoveSwimming‍  I kbow it's a different  type of cancer but my fiance had to wait about 4 month I between treatment  and surgery.     A few factors were involved.    He needed the chemo to be out of his system. .. he needed to gain weight to be strong enough. ...so sometimes there are long wait times and it's so frustrsting but it happens.   

Re: 100 days til surgery? Is this normal?

Posted by Kims1961 on Feb 13, 2019 7:18 pm

LoveSwimming‍ ...I found the Cancer Care website good for medication info too. 

I enjoy your sense of humour.  I used to say to my dog when she was extra cuddly...”can you smell my cancer”? And she would just sigh. 

Now is is a good time to build up your reserves for those IDC cell don’t realize that a big sneak attack is on the horiizon...just as they are getting comfortable-eviction is around the corner! 

Kim

Re: 100 days til surgery? Is this normal?

Posted by LoveSwimming on Feb 14, 2019 12:18 pm

LMAO  thanks Kim!
Love the bit about your dog. Yeah, if I can hold on to my sanity until March 13th...I'm sending in the Marines!
And thank you everyone. :)

Re: 100 days til surgery? Is this normal?

Posted by LoveSwimming on Mar 15, 2019 6:48 pm

Just a quick update. I had my lumpectomy on March 13 which seems to  have gone well. At home recovering. Don't want to think about what next steps might be and won't know for a week or two. But right now...just want to celebrate that this monster is out of my body. For all the hell I have been through emotionally since my diagnosis in January, I am enjoying a couple of days of pure happiness that I am tumor-free. 

I read somewhere here to take this journey one appointment at a time and that is great advice. I love this site. It has been so helpful. Thank you for having this place to come to talk. Sometimes (most times) I just log on and read posts and feel like I am not alone in this. Not that I would ever wish anyone to share this awful experience, but seeing as there are others out there, I am so very grateful to connect.

My health team was  amazing; so kind and reassuring. 
The wire localization procedure hurt like a b*tch. So did the radioactive dye injection to light up my lymph nodes. They said it would feel like a bee sting. Sure, if the bee was about a foot long. Jeez. 
And of course, lying in the pre-op area with no makeup, hair all messy and wearing my dorky glasses, with a wire sticking out of my boob...of course ....that is when I meet the most handsome man on Earth (the anaesthesiology resident). Alas. 

Okay, back to resting til the next steps.
I think about the people here often and wish you all well. xoxo

Re: 100 days til surgery? Is this normal?

Posted by ashcon on Mar 16, 2019 7:37 am

Hi LoveSwimming

Thanks for the update and so glad to hear it went well... (well, except for the part about meeting the most handsome man on earth when you weren't at your "peak"! Haha) 

Like you, I sometimes just wander around the site  reading people's posts, and have been following your story. 

I know what you mean about the joy of knowing the beast has been removed from your body.
When I had my lumpectomy and SLNB in July 2017, I was on my bike 3 weeks later, pedaling down back country roads and I swear I felt 10lbs lighter with that lump removed,  even though it was only a 2.4cm lump. 

This is the first of many wins you will feel as you take charge of this journey. 

"This is Me" from Greatest Showman just started playing on my iPod and I am thinking of you! 

Re: 100 days til surgery? Is this normal?

Posted by LoveSwimming on Mar 16, 2019 10:32 pm

Thank you, Ashcon, for your kind post. I am going to use you as my body goal and try to be back in the gym in the next few weeks (at least on the treadmill, as swimming is out for me for a while).Yeah, it is a huge weight off getting that thing out. Thanks for thinking of me! 🙂

 

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