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My mom was recently diagnosed

My mom was recently diagnosed

Posted by KimGarnham on Jan 6, 2019 10:56 pm

Hello.
I am here as a daughter. My mother was recently diagnosed with breast cancer. The positive biopsy came back in the first few days of December. Since then, we have had a bone scan, MRI and a CT scan. We met once with a surgeon who recommended the full mastectomy, and ordered the CT scan that we completed (on Christmas Eve). And we saw a plastic surgeon (Boxing Day) in regards to reconstruction. The plastic surgeon asked us to come back after a complete CT and after seeing the surgeon again as well as the oncologist (we have yet to see). We have an appointment for the 19th of January to see an oncologist. The surgeon booked us in to see her again for Jan 9th.. I felt this was not right so we called and asked if we should be seeing an oncologist first. They said yes, and have now move our surgeon appointment to Jan 21st.

My questions are.

How long after diagnosis do patients normally wait in BC to see an oncologist?

The family doctor hands over this diagnosis to ...? Who is now responsible for my mother’s care, for arranging referrals and tests?
It seems to be the surgeon doing these, but at the same time they aren’t sure on their end who and when she should be seen. 

How long is safe to wait in these situations? We haven’t even been informed of CT results.

Her pain started in November. The lump causes sharp sudden pain. As of the last two weeks, more so the last few days, her pain is so great I have chosen to refrain her from driving and am worried to leave her alone. 
The lump seems to grow rapidly.. 

So do we wait and see the doctors on the scheduled dates?

Advice will be appreciated.

Kim 

Re: My mom was recently diagnosed

Posted by Minus2 on Jan 7, 2019 6:51 am

Hi KimGarnham‍,
I am very sorry to hear of your mother' diagnosis.  This stage of the journey - imaging and information gathering and diagnosis - is a whirlwind of appointments and information and it's hard to know who does what in terms of care.  I am in Ontario and was diagnosed with breast cancer in May 2016 at age 54.  My family Dr. made the referral to a breast cancer / oncology surgeon as soon as he saw my imaging, before the biopsy was performed, so my diagnosis was delivered to me by my oncology surgeon.  I was recommended for bilateral mastectomies followed by immediate reconstruction which I agreed with and was referred to a plastic surgeon.  In my case I had the biopsy results within 24 hours of the surgeon having them and I saw the plastic surgeon within 2 weeks.  Then we had to book OR time.    
My cancer was discovered during a routine mammogram performed at the beginning of April.  I was in surgery in about 6 weeks from that initial imaging.  And it was my oncology surgeon who coordinated everything until after my post-surgical pathology was reviewed with me.  Post surgical pathology showed the tumour to be larger than what the imaging had indicated, so that's when I was referred to a medical oncologist and a radiation oncologist to discuss the benefits of chemotherapy and radiation.  Those referrals took 3 weeks.  Prior to receiving the post surgical pathology, there had not been any discussion of chemo or radiation.  My cancer was ER+, PR+, HER2-, with no lymph node involvement; my treatment is focused on hormonal therapy, prescribed and monitored by my medical oncologist.  
Any of your mother's Dr.'s should be able to discuss the CT scan results with you, provided they received them, so whoever you can see first is who I would be setting an appointment with.  In some cases surgery is the first step in treatment.  In other cases, chemo is needed first and then surgery.  It all depends on the size of the tumour and whether or not it is contained in the breast. 
Hope all this helps Kim.  Your mom is very fortunate to have you for support and to help her advocate.  Let us know how the appointments go and please post with any other questions that come up.
Minus2

Re: My mom was recently diagnosed

Posted by Cynthia Mac on Jan 7, 2019 9:28 am

Hi, KimGarnham‍ , I’m also in Ontario, and my Dad was diagnosed with lung cancer in late 2017. They found the ‘spot’ on a routine X-ray as part of a physical. He got that news on Nov. 1, and had his first consult with the thoracic surgeon on Nov. 17. After that, came the PET scan, the needle biopsy, and the MRI. They sure don’t mess around with delay! ( it has made me much more patient about waiting for a CT scan after hurting myself in a fall. Not that I was impatient before, but I have a much better understanding now as to why we have to wait for tests sometimes - it’s because others need them sooner than maybe I do!)

Dad’s surgery happened on Dec. 15, and he was referred to the oncologist, who he saw 6 weeks later to discuss the option of chemo, which he started at the end of February. So, depending on the situation, it can take “a while” for things to happen. To be honest, i was shocked at how quickly it all happened. So many things to co-ordinate in such a small span of time!

Someone on the medical team should have CT scan results now from Dec. 24. The holidays might have delayed things a bit, but they should be past that now. Everybody on your Mom’s medical team should get any test reports - that’s what happens here, and I think the BC system is fairly similar. You can also request the test results yourself, but since I wouldn’t have a clue how to interpret them, I never bothered.

If your mother’s symptoms seem to be getting worse, I would contact the oncologist to let them know, and, as Minus2‍ says, get her to the first appointment you can. 

Something that I learned (and did not expect) was that my Dad’s GP became quite the advocate and ally. We had had issues with him in the past, so this was a pleasant surprise. So keep in touch with your Mom’s GP, as needed.

As you can see, all you have to do is pipe up with a concern here at Cancer Connection, and you’ll get a response to your question. Don’t be shy, and do keep us posted as to how things are going. If I can be of any help in the caregiving department, just let me know.

Re: My mom was recently diagnosed

Posted by KimGarnham on Jan 7, 2019 1:14 pm

Minus2‍ 

Thank you for your reply, it does help knowing how the process is expected to be. Because it’s completely uncharted for us it’s frightening not knowing if things are going as expected.
My moms tumour was discovered because she was experiencing pain and noticed the lump. It’s quite a big lump and has gotten bigger and more painful as the days go one. This is adding to our concern. She’s becoming weaker it seems with her arm stength on the side with the cancer. Her results showed that the cancer is also in her lymph nodes and they showed us where and now we can feel that by examination as well. The surgeon told us, that chemo is going to be required and that the CT results will show us if radiation as well will be needed, of which would need to happen prior to surgery. When meeting the plastic surgeon she told us she wasn’t sure why we would see her without the results from the CT scan being as that would determine the options available for reconstruction. So, that initiated my questions/concerns about who we should see, when and in what order.. 
The plastic surgeon also mentioned, that although she not the one to discuss this with us that seeing the biopsy results she feels like radiation would definitely be needed and that the cancer my mom has is the kind that is “resistant to hormone therapy”. She said that’s all she would say about that and we would need to talk to an oncologist. Now that our concern is higher, we are made to wait for additional explanation.

in addition, the site of her biopsy has not healed and seems to be infected, she’s treating it with topical antibiotics. It’s become quite uncomfortable. I worry that having an infection prior to surgery is something that might be problematic.

I know, that waiting is part of the process, it just is really difficult to not think is there something more we should be doing? 

Kim

Re: My mom was recently diagnosed

Posted by Essjay on Jan 8, 2019 9:46 am

Hi KimGarnham‍ 
im sorry you and your Mom are going through this cancer journey.

If your Moms tumour is ‘resistant to hormone therapy’, that means it does not have receptors on it to hormones like estrogen, progesterone. That means endocrine treatments that some women can take instead of chemotherapy or as well as chemotherapy, for a period of years (tamoxifen is an example), are not treatment options. I’m in that situation. My tumour was not hormone receptive. So my treatment plan post surgery is chemotherapy and radiation (I had my second round of chemo last week). Fortunately, hormone negative tumours respond well to chemotherapy.

like you, I found the waiting the worst part. It really stoked my anxiety. I have found the best way to deal with that is distraction. Doing things that keep me busy.

I wish you all well, keep asking the questions, someone on here will have some advice or an answer.

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