Anyone want to sit and wait with me?

ColleenS80 · August 2018

Found yaone

InnaB2018 · August 2018

Here is one more

InnaB2018 · August 2018

Moth and Amica, good luck for tomorrow! I’ll keep you in my positive thoughts (when I get them) 🤣😋.

Amica · August 2018

InnaB2018, ColleenS80

OK you made me smile...

Good luck tomorrow Moth!

oxygen18 · August 2018

Thinker, Deep Thinker

-------

Dear Amica, dear Moth, I hope tomorrow goes well, and look forward to hearing how it's going.

Wishing all a good night.

MiCyn · August 2018

OMG Ladies !

What a nice surprise coming here tonight and seeing so much muscle ! Man oh Man! I need to catch up here, been out of the loop for few days. I had MO appt today. I'm tired. It was a rough week. I will be back tomorrow when I can think clearly, and read about whats happening with everyone. Maybe I will just take another quick look "around the pool " 🤗 all.. Cyn

moth · August 2018

Back from the biopsy. Whoa, the stereotactic mammogram guided one was more involved & took a lot longer than the ultrasound guided one I had on my left breast. It also left a bigger hole and significantly more bleeding; big dressings & restrictions for showering & exercise for 48h. I guess the cabana boys will have to sponge bath and massage me

It wasn't fun but it's over and done with & now we just wait for results.

Amica · August 2018

Whew! that doesn't sound like too much fun. Well like you said, at least now it's done.

Sending healing wishes your way to deal with the pain and discomfort. And hoping for quick biopsy results.

Amica

Amica · August 2018

Dontcha wish the waiting room looked like this to make all this waiting more tolerable...

ColleenS80 · August 2018

moth, I’m sorry that sounds like no fun, so glad it’s over for you. We are waiting with you-please keep us updated!

That waiting room looks lovely Amica. Wouldn’t it be lovely if we could all wait in a place like this?! With our pool boys?!

Did anyone have delayed vision problems after chemo? Mine seemed to be fine when I finished at the end of June, but for the last week or so I’ve noticed a lot of blurriness in my vision. I know that chemo can affect your vision at least temporarily, but I figured it would’ve happened before now?

ksusan · August 2018

Glad it's done, moth. I didn't find either type of biopsy brief or pleasant!

Colleen, yes, the taxanes can cause eye dryness. You might ask your ophthalmologist about trying Systane Balance or Systane Ultra. There's also a night time goop.

InnaB2018 · August 2018

moth, did you get your biopsy results?

Amica, how did your oncologist appointment go?

Keeping you ladies in my positive thoughts when I get any

moth · August 2018

Hi Inna, thx for thinking of me. Not yet. Because it's a low suspicion lesion they said it might take up to a week as it's not in the priority queue at the pathologist. I think probably by next Wed. I'm momentarily distracted from it all because I found out yesterday I start rads on Monday

Amica · August 2018

Hi Inna

I got through the appointment but it was scary. Further tests are necessary, long delays to get them done. The oncologist is booking them in another city in an attempt to at least get a bone scan and CT done within a couple of weeks. Dealing with a big slow bloated bureaucracy, the healthcare system here is over-burdened.

Hoping for a quick turnaround for your biopsy results Moth !

Amica

ColleenS80 · August 2018

Been thinking about you ladies!

Moth, my center was able to get me in early so I start rads Monday as well. Hopefully their low suspicion is correct and that means you’ll have nothing to worry about! Not that it helps the waiting until you know for sure, I know.

Amica, I think there is nothing worse than waiting so long for an appointment, only to be told there are more tests and appointments to be had before they will really tell you anything. I’m so sorry you’re having to wait longer. Ugh.

I had my first zoladex shot yesterday and will start taking Arimidex tonight. Fingers crossed that the side effects are minimal and manageable. MO said if this is not the right one for me we can try another.

Amica · August 2018

thanks Colleen

Good luck with the rads for you and Moth!

And Colleen add my crossed fingers that your side effects are minimal and manageable.

ksusan · August 2018

Thinking of all of you and wishing I had some entertaining banter

InnaB2018 · August 2018

Amica, so sorry you have to wait some more! This is infuriating. Couldn’t they have scheduled these scans while you were waiting for your MO? Well, there is nothing can be done about it. Hopefully you’ll get them scheduled soon. Stay strong!

Amica · August 2018

InnaB

I wanted a PET/CT to see where the cancer has spread, but I was told the Ontario government healthcare system has not approved PET/CT for breast cancer! The physician would have to make a "special access" request with something called the Ontario PET Access Program, and she said she would not do that, that in her opinion regular CT would suffice. She said some patients go to the U.S. to get the PET/CT. I know the PET/CT allows for more specificity and accuracy, and can better identify malignant lymph nodes, so I was disappointed (and pissed off ). In the U.S. it's the health insurance companies you have to fight, here it's the government controlling and restricting access to procedures.

I'm also thinking of asking for a Clinical Trial referral to a bigger Cancer centre in Toronto, because my onc said there were no clinical trials for me at the Juravinski Cancer Centre. It's all so complicated and I get exhausted doing all this advocacy for myself, but I know no one else will do it. Would Juravinski refer me to somewhere in the U.S. for the PET/CT, or would my former oncologist in the U.S. have to get involved and order the PET/CT and then I have to fly there and oh, boy, the logistics and cost are daunting. And maybe my MO is right, maybe CT is enough, I just don't know.

ksusan, no entertaining banter is necessary I am grateful and appreciate your taking the time to post and voice your support.

And Colleen I hope you are comfortable and not experiencing unpleasant side effects. You are in my thoughts.

peace and love to all.

Amica

bella2013 · August 2018

Amica, I am so sorry you are having to fight so hard for treatment. I wanted a PET Scan too because I did not have chemo or rads. My Oncologist said no to CT or PET Scan, stating there was no protocol to order either of them. My nodes were clear but my margins were not. Of course I had a huge fear of cells floating around. I had two lumps appear near my SNB. I was sure that they were scar tissue but I went back to my BS who also thought I didn’t have anything to worry about but sent me to my breast center for an ultrasound. My sister was with me and told him I wanted a PET Scan. He asked why my MO would not order one. I explained her reasoning. He said he would order a PET Scan and use the two new lumps as the reason for the Scan. He said we may not get it but he would fight for me. I had the PET Scan in June. It came back NED.

I fired my MO and I meet my new one this Monday. Since you are having a recurrence and it has metastasized...surely that is reason for a PET Scan. Maybe you could find a MO who is willing to treat you and not just toe the line with the gov’t. It is so frustrating and I am so sorry that on top of having BC you have another monster (gov’t) to fight.

Sending you ((hugs))

Amica · August 2018

Thanks bella,

So glad your PET scan came back NED!

Yes I definitely prefer the doctors who are willing to go to bat for a patient! I saw my previous oncologist for 13 years, and I think when you become more than just a number to them and they know you more personally they are more likely to fight for you. This was my first visit with this young oncologist, and I think she was just "following standard procedure." I meant nothing to her; I was just her 11 a.m. appointment.

I used to work at a Cancer Center as a Coordinator of a specialized division, and I always went to the nth degree for patients. I remember once a nurse was complaining that I was ordering too many of a certain type of test, and the head M.D. of the Division overheard her, and he did say to her, "What's it to you? You're not paying for it.", backing me up. I was like --fist pump!

I'll see what happens after they run the standard tests, if they are equivocal there will be more of a case for PET-CT perhaps.

A relevant commentary article:

Pet Scan Value

InnaB2018 · August 2018

Amica, My insurance didn’t approve PET scat ordered by my MO before the start of chemo. The protocol, they said, was to first get a bone scan and a CAT scan. If there are any unanswered questions, only then they would agree to PET. My MO said that now it’s becoming a standard practice now because PET scans are so expensive, and a combination of bone scan and Cat scan provides the same info. Except, it’s 2 tests, and you have to wait for the results twice,but insurance companies can’t be bothered with such minutiae. So, it sucks in New Jersey as well. Question for you: why do you think that your recurrence is metastatic? You might just have a locoregional one. Only these damn tests will tell you if you have metastasis, otherwise how can you know?

Amica · August 2018

InnaB

re: "why do you think that your recurrence is metastatic? You might just have a locoregional one. Only these damn tests will tell you if you have metastasis, otherwise how can you know?"

The question is the extent of the metastasis, and as you note that is what the CT and bone scan are for.

I hope you are doing well. How are you holding up under the Taxol?

Amica

Amica · August 2018

Is my case proceeding extremely slowly or am I being too particular?

mid-June - pointed out lump on collarbone to family doctor

June 22 - ultrasound

June 29 - ultrasound results in - large suspicious mass

July 13 - biopsy

July 19 - partial biopsy results in - metastatic adenocarcinoma to lymph node (recurrence from primary)

July 13-Aug 9 -further pathology results slowly come in

August 9 - first appointment with oncologist

August 14 - full body CT scan

August 20 - bone scan

August 23 - next appointment with oncologist

- for the chemo regime the doc thinks she will use (Ibrance/Letrozole), it requires special "exceptional Access" permission to be obtained from the Ontario government, which I don't even know how long it takes, days or weeks.

So it will be September or even October before I even start treatment for advanced breast cancer. So 3 to 4 months from showing doctor the lump until treatment---any treatment.

Has anyone else experienced delays like this or am I just unlucky? Or maybe it's just slow because it is advanced BC and not early stage.

(I contrast this with my first breast cancer, found lump late in August, all surgery completed by end of September, started Chemo beginning of October. So after 1 and 1/2 months well on my way to treatment.)

WC3 · August 2018

Amica:

As an American, if I were close to Canada I would have gone to Canada for a full body PET/CT if my insurance denied it. The pre negotiated price for a full body PET/CT at my health care provider was $10,000 and the post negotiated price was $3400. I hear they are often not more than $1500 out of pocket in Canada.

ColleenS80 · August 2018

gosh amica that does seem like a long time. I’m not sure about timelines for early/vs more advanced, but it still seems like a long time. Perhaps you could start a thread with a title about wait times in Canada and see if anyone chimes in with advice? In the meantime, was your body scan ok? I hope the bone scan and follow-up go ok. You said the onc had an idea for treatment in mind already...does she think she knows what the results of all the tests will probably be? What stage will it be considered? You are in my thoughts and prayers.

InnaB2018 · August 2018

Amica, can you go to a different hospital/cancer center? Maybe it will be faster there...

Here is my timeline:

Ds: 03/26

First breast surgeon appt:03/38

Second breast surgeon appt: 04/09

Second biopsy: 04/19

Surgery: 04/25

Bone scan: 05/14

Ct scan: 05/19

Chemo start: 05/31

Amica · August 2018

wc3 - I can get a private PET-CT here for ~ $2,200 at a private imaging clinic. However my oncologist said she would be willing to put through an Ontario PET "Exceptional Access" request for me with the Ontario government healthcare. .

Thank you Colleen, I have complained about wait times in Ontario on here in the "Rant" section lol ! Looks like my wait times are not way out-of-line for Ontario, except for the delay of 26 days between biopsy and first visit with the oncologist.

I actually live within 1 or 1 -1/2 hours drive of four cancer hospitals, but getting to Toronto would be a hassle. But I am considering them.

So far the CT showed two additional enlarged lymph nodes that are metastatic in appearance near the large one by my collarbone, so that is three. The full body-CT did not reveal any lung or liver metastasis, or other suspicious lymph nodes. They did not do my brain. My bone scan is on Monday. No one has mentioned staging to me at this point, except to say I have advanced BC, ER+/PR-/HER2-. Oh, and probable basal cell carcinoma on a spot on my forehead. PET-CT would be very helpful for staging. So far, endocrine therapy and chemotherapy, and possibly surgery and radiation, have all been mentioned.

Thanks InnaB-- that's helpful.

I am just very anxious. Did I mention I have a sensation of being strangled, both literally and figuratively ? It is from the pressure of the tumors.

Thanks for your replies--it means a lot to me!

Jadedjo · August 2018

Amica

I think the wait depends on how fast the doctor sends the paperwork. Considering it's advanced cancer it shouldn't be all that long but we both know the cdn system has failed many a patient.

They found the lump on ct June 25th,about July 14th was the biopsy, aug 8 was the bs appt,next week is the ps appt that I had to bug them for,and they say surgery will probably be beginning oct so ya Canada wait times are long and they say I'm early stage. I asked will I still be by the time you take it out?

It's frustrating and scary but probably more when it's metastasized. Hopefully treatment will help, and they will get off their bums and start cracking down.best wishes.

Amica · August 2018

Jadedjo I hear ya. What province are you in? was it Manitoba?

Guess we'll both be spending more time in the Waiting Room!

Definitely there are problems with both the American and Canadian healthcare systems; just different types.

take care,

Amica

Anyone want to sit and wait with me?

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