Need some advice

Mantra

Need some advice

Mantra

My sister was diagnosed with breast cancer with lymph node involvement on May 5th. Friday is her appointment with the surgeon (first appointment after biopsy) at a major cancer centre.  I had assumed the plan of action would discussed at this appointment. However, she just received a call saying the surgeon will be out of town and she will be seeing one of her fellows.

She wants me to come to the appointment and I'm trying to learn everything I can before Friday. I too had breast cancer. But stage 0 regardless of how aggressive, cannot possibly be compared to what my sister is going through.

Should she expect to receive additional tests to see if she has mets? If so, at what part of this journey does this happen? She says she has a terrible headache for over a month and worries that this could be mets.

Her cancer is very aggressive. 6 months ago her mammo and ultrasound showed nothing. Now it shows a large tumour with lymph node involvement.

I'm sorry for all the questions but I need to know what to expect so I can know how to handle the appt.

My questions are:

Should she expect Surgery or chemo first?

If chemo, how long did it take you to see an oncologist? This seems like another delay.

Because she isn't actually meeting her surgeon, is it possible that this meeting will be fluff and not provide us with any answers to what is going to happen. Her cancer is growing so quickly and moving through the system as fast as possible is paramount. She did waste a complete week with an idiot local doctor before I forced her to stop being a nice person and pushed my own surgeon to take her on as a patient ASAP. I'm much pushier than my sister, and I have no problem doing whatever I need to, to give my sister the fighting change she deserves.

As expected she can't even think straight and I have become her lifeline. Of course, that's what sisters are for and I don't care if I have to pick her up in my arms and carry her across the finish line, I will never give up. She worries that more delays are in store and she is ready to completely loose it. I too am worried about the same thing although not telling her this. If her cancer grew this quickly in 6 months, and now amost another month has passed since her diagnosis, I worry about mets.

I told her I would ask people on this board how long from their diagnosis to chemo. Or from their diagnosis to surgery? Chemo first or surgery first? How long a wait to see an oncologist (princess Margaret Hospital in Toronto). What else do I need to know.

Any help is so much appreciated. All I know about stage 3 is that there are 3 stages of it. We won't know until Friday which stage she is. There seems to be so many different types of chemo and I'm getting confused trying to understand it. I do understand that if she is ER/PR negative, she will not receive hormone treatment. I'm confused about rads and if and when this happens.

I will add that my sister is 64 (not sure if that matters).

Hoping someone will jump in and help us out. I can tell you everything you wanted to know about DCIS but otherwise I'm green.

Kay_G

One thing that worked out for me was that the surgeon talked to the onc.  I saw the surgeon 5 days after I got the biopsy.  She wanted me to do chemo first to shrink the tumor and get better results with surgery.  So when I saw her and she knew this, she went right out and talked to the onc. and asked her to see me that day.  It  was the afternoon at that point.   She couldn't see me that day, but she did make time to see me the next day.  And it's not because she's not busy all the time, because I know she is.  If your sister is going to a cancer center, hopefully the docs talk to one another and get the patients with aggressive cancers seen quickly.  I did have to get a lot of scans before I could start chemo.  But those got done quickly and I started chemo within a week.  Good luck to your sister.  Please let us know how you're doing.

KerryMac

Mantra, I am in Toronto too, so what I experienced may be a good indicator of time-frames. I was treated at North York General Hospital though, which is much smaller than PMH.

Firstly, the time from first meeting with my Surgeon until Surgery seemed excruciatingly slow. In hindsight though, I can see they needed to know what they were dealing with to make the right treatment decisions. So don't get too freaked out if she isn't in Surgery ASAP.

I met with the BS who Dx me, and she then set up tests/scans - breast MRI, Chest X-ray, Abdominal U/S, bone scan. That all took about 3 weeks.  I couldn't understand why they needed to do all that first, but now I know it made total sense - they needed to see if I was already Stage IV, they also needed to see where the tumour was, etc, to see if Chemo was needed before they could remove it. So it is vital to get that info, even though you want the tumour out now. Once they know the extent of what they are dealing with, they will decide whether she will need chemo before surgery or not. Once my BS had all my results, she then scheduled Surgery, so I had another couple of weeks wait.

After I met my BS for my post-op/path report I was referred to an Onc, I met her about four weeks after my surgery (Christmas was in the way, so it slowed things a bit there) and she had me starting chemo two days later, that is much quicker to get organised.

I did FEC-T chemo, which is standard of care at most TO-area hospitals. However, I am ER +, so they may use something different. Also they won't know her stage fully until she gets her path report.

Best of luck to her, please feel free to PM me if I can help more. 

pupfoster1

Hi hon,

I am sorry to hear about your sister's dx and that both of you have had to travel this road.

A lot will depend on what the oncologist says.  Is the doc you are seeing a surgical onc?  They may suggest chemo first to shrink the tumor (some woman report it completely disappears after chemo!), then surgery, then rads.  

They will more than likely do some scans/tests to see if they find any elsewhere and then go from there.  How are you determining the aggression factor other than the mammo and ultrasound?  I had a 6.5cm primary tumor that was never picked up on my annual mammos.  Classic dense breasts (I was large, but you can have small dense breasts too), "trying to find a polar bear in a snow storm" thing.  So until you speak with the doc try not to go ahead of yourself too much.

Waiting stinks that's for sure, but you want all the information you can possibly get before she makes any tx decisions.

Keep us posted!

Sharon

Mantra

Thank you for your replies. You both said you had scans before starting chemo and that does make sense. Were your scans all done on the same day?

jennyboog

I'm so sorry to hear your sister and you are going through this.  There are others on here who know a lot more about this than I do but I can tell you how my experience went.  I think all dr's and hospitals do things a bit different.  I was scheduled for a MRI the day I did my biopsy and found out the results a week later.  At that point I did a PET scan, a MUGA heart test, biopsy of my LN, all sorts of bloodtest, BRCA testing, all this before chemo.  I was freaking out and wanted to start chemo right away but it was a few weeks before I did.  I felt like the cancer was spreading, it was a terrible time for me.  They were even trying to do my port placement before chemo but that didn't happen.  I did chemo first, I had 2 tumors, 1 large and they were trying to shrink it to get clean margins.  I also had IBC and they were trying to get rid of that.  Once you have your path report and know what type of bc you're dealing with then you'll feel some control again.  I'm er+ & I did dense dose AC and then taxotere.  I saw my IBC go away and felt my tumor shrinking and getting soft and at my BMX surgery I had 5 out of 16 LN + with residual so I know chemo was working.  I first found my lump May 27 and did a mammo the first of June, I was told that the mammo was normal and they saw nothing.  I knew it was something and I had to be my own health advocate, I kept going back and was dx. July 27....two mths after the lump was found.  I'm telling you this because she might need you to be her advocate and get things done....no nice guy.  I don't think the BS appt will be fluff, she'll probably tell you what you can expect and what they recommend, even if she won't be doing the surgery herself.  It will also be an opportunity to ask questions and get some info.  Her age might be something they consider, I only say this because they told me I would get hit with everything (I was 34) because they thought I could handle it at my age.  My prayers are with you both and please let us know how things go, we're here for you.

KerryMac

Mantra, some of my tests they scheduled for the same day (U/S, bone scan, etc) but the Breast MRI was at a separate time, and then I needed follow-up testing from that (another U/S and then another MRI and biopsy) Then my Family Dr thought she felt a mass on my ovary at my pre-op physical, so there was another U/S for that. Needless to say, it was a very stressful 3 weeks!  But once it is all done you will have all your cards on the table, and will have more of an idea of what you are dealing with.

BTW, my cancer was initially missed on an U/S as well, you will find it is not uncommon among us stage 3'ers.

kathleen1966

I was told by a couple of surgeons I saw that cancer doesn't move that fast. I was worried that a month had passed before I actually had the surgery to remove my breast/tumors/DCIS/Paget's disease.I had all of my tests for staging before this surgery. In a nut shell, no nodes on numerous test turned into four positive nodes at surgery. One 4.5 centimeters. This could mean, that yes it can grow that fast or that you don't really know what's in there until you have surgery (this is what I believe is the case). A lot of times they will want to do chemo first if the tumor is large or if there is a chance to shrink the tumor and have a lumpectomy instead of a mastectomy. Some think it is good to have chemo first because then you can make sure the chemo is working. Also, if you have chemo first, you don't have to wait four weeks while you are healing after your surgery to start chemo As my breast was going to be removed either way (largest tumor 1.6, but about 7cm of DCIS), I opted for surgery first. I then realized afterwards that in doing this, I would not know if the chemo worked. But also in doing surgery first, if the chemo didn't work, I wouldn't have spend all that time having the cancer spread more. Every decision has its ups and downs. Your sister may only be stage II if she has up to three positive nodes. Then there are two parts of stage II depending on tumor size. Once you hit 4 nodes, you are stage IIIa despite the size of your tumor. It is possible the cancer just wasn't seen on the mammogram but was there six months ago. "They" also say that tumors take years to grow. Not sure if I believe it though. Good luck. Good to have a sister like you around.....I made my appointment with the oncologist after I talked to the surgeon. If you like the surgeon, then you can ask for recommendations for oncologist. One thing, I didn't like about my hospital cancer center, was that the surgeon and oncologist and lymphedema therapist never worked together. It would be good to go to a place where this happens. Sometimes the fellows are more helpful and knowledgeable than the surgeons. I saw many fellows, and they were all very, very helpful. Also, I had a PET/CT scan before surgery and an MRI of my brain. No bone scan. I assume this is because I had the PET scan. I also had an echo. My tumors were very vague on the mammogram. And were referred to as a "diffused area" by one of the surgeons (could be seen on the ultrasound though). I was stage I until surgery. Then they dragged me to stage IIIa kicking and screaming.....good luck!

possom60

Hello Mantra, my name is Di, I am 64 & live in Australia. Your sister sounds so much like me. I was diagnosed in Dec 2006 eight months after my mammo. I had IDC 14cm which occuped the whole right breast. Having dense (Lumpy) breasts it took awhile to figure this mass was not normal.  Because of the Christmas break I also had to wait but my doctor really pushed and I had mammo & ultrasound on the first day I saw her. My regular doctor was away and this lady doctor I saw was a locum from Ireland only here for six months. I curse the day she went home to Ireland, she was brilliant. An appointment was made at the Breast Clinic for 6 weeks later, Doctor was not happy so I got in within the week. In ten days I had it all done, bloods, biopsy, MRI, bone scan, heart test, appointment with surgeon, radiologist, lymphodema clinic. My chemo stated 2 weeks after I first saw the doctor..(And I couldn't taste my Christmas dinner!!!).I had chemo first, 5 months of it to shrink the tumor before surgery, doctors said if I had surgery first there was an 85% chance of it coming back. I then had 3 weeks break before surgery to get my immune system up. I opted for a double mastectomy as I did not want to be lopsided & also afraid of it recuring in the other side. After another two weeks, waiting for the wound to heal a little, I had 25 doses of radiation. All in all this took eight months. My worst experience in all this was the neulasta injections,(to increase white cells) I suffered immense bone pain, and could hardly walk or breath. I tolerated the chemo, just a little nausea, but I lost finger and toe nails, also hair, and suffered severe indegestion, which did cause me to vomit. I was on Taxotare. My cancer was very aggressive, but after 4 years I am fine. I have to have check ups for another 4 years, and doctors say at this stage my chances of it returning are 25% and decrease as time goes by. Support your sister, and go with her to as many appointments as you can. They tell you so much you need a second person to help take it in, believe me. My husband was not so supportive and my brother accompanied me. I am thankful for that. If the doctors believe your sister has mets, I would assume they would check this out before surgery. By the time you receive this message, I expect something would have been done by now. Please keep us posted. My very best wishes to your sister. She is lucky she has you.

I

Mantra

Thanks for all the replies. They have been extremely helpful and given me a good understanding of what we should expect.

Today was test day. The hospital wanted to do their own testing. A nurse practictioner took a detailed history and told my sister she would be with her during each of her tests today as well being with her on Friday when she gets her results. My sister said she was absolutely wonderful.

One odd thing is that after testing one node they asked my sister if she has had a major infection lately. She has not. Then they biopsied a second lymph node. These results will take 5 days so we won't know what's going on with her lymph nodes in time for our Friday appt. I'm thinking it sounds like perhaps the enlarged lymph nodes may be a coincidence and not have anything to do with her breast cancer. Maybe wishful thinking but fingers crossed regardless. An MRI will also be done in a week to 10 days.

The NP told my sister that by Friday a treatment plan will be in place and discussed with us at that time. Don't they have to wait for the lymph node and MRI results before putting a treatment plan into place?

I'm so pleased with how everything was handled today and have much more confidence now that she is with a major cancer centre. I finally feel like I can exhale. I know she is now in the best possible hands and I don't have to push, bully and cajole to get her the care she needs.

Next step . . . Friday's appointment.

jennyboog

Glad to hear she's in good hands and you don't have to fight for her tx.  Keep us up to date on things.  Hugs and prayers going your way.

hrf

Mantra, sounds like things are rolling now. PMH and Sunnybrook are the major cancer centers in Toronto. Sometimes lymph nodes can be enlarged as a result of infection. In any case, while the staging is important - I think to make sure it's not Stage IV which might change the treatment plan. But it is the surgery that gives the full picture. They really don't know the total lymph node involvement until the path report comes back following surgery. Also the size of the tumor can only be confirmed with surgery. Best wishes. I'm hoping for the best for your sister

sewingnut

Glad to hear your sister's treatment plan will be in place. I had biopsy, 5 day later met with surgeon, a week after that MX.  Two weeks later met with Onc and within 3 weeks started TCH X6 chemo. Will be finishing up chemo today then on to a year of Herceptin.  I have been really pleased with my Onc team. They anticipated and had RX's in place before any chemo started so I was ready for any SE that may have arised.

Please tell your sister to start 2 binders for information. One binder for all her medical tests, lab reports, scan reports and anything else related to her health. She is entitled to them and should insist on them all. The second binder for all medical EOB'S (explanation of benefits) from her insurance. Make sure all her bills from her providers are compared. They have tried to double bill be for several procedures and I had to prove that I had paid them. I staple all corresponding bills to the EOB when they come in with date and check #. All bills are in date order so they are easy to find. Call me OCD but it has saved me a lot of $$$$. Always get who you talk to and a reference # for the call when talking to the insurance co, They tape and make notes of all calls. They will also call the provider if there is a discrepance in any billing. 

Blessings for your and your sister. She is lucky to have someone to walk this walk with her )

Mantra

I'm absolutely appalled at how her case is being handed at PMH. We got a referral there and was told her surgery would be within one or two weeks of meeting with the doctor. PMH did a core biopsy, lymph node biopsy, mammogram and ultrasound and she met with a doctor from PMH two days later on May 27th. The surgeon went away at the last minute so someone else took the meeting.

They said the lymph node results won't be back until today. They booked her for an breast MRI for June 13th  They also put her in a clinical trial. They have also booked an appointment for her to see the surgeon on June 15th. She asked if she could find out the results from her lymph node biopsy today by phone/fax and they said no. She has to wait until June 15th to get the results.

Then they told her surgery may not be until July because the operating rooms at the hospitals are closed the last week of June, July, August so OR time is very tight.

So her original diagnosis was May 5 at York Central. She was rediagnosed on May 25. And instead of having surgery the first week in June, it is not even been booked yet.

I am absolutely furious. If it were me, I would ask for a referral to another doctor; one who has the time to do what they said they would do. But she's just patiently waiting while cancer spreads. WTF!! She refuses to go to another doctor. I've begged and pleaded and the answer is no.

I have an appointment with the same surgeon tomorrow for my follow up appointment. I am so furious I don't know how I'm going to manage to have a check up with her when I am so angry at how my sister's case is being handled. This is a top cancer hospital and IMO they are being nothing short of irresponsible and they are playing with my sister's life. If it were me, I would go to the head of the hospital and complain. My sister won't allow it.

I wish I never referred her to PMH and it will be the very last time I ever suggest to anyone that PMH is the place to be when you have cancer.

judylynn

I found my cancer lump myself and it was there six months after my last mammogram.  It was an aggressive type of cancer and it took almost a month from the time I was diagnosed until my surgery.  I had a mastectomy.  It partly depends on the size of the tumor whether it can be taken out or whether you have to have the mastectomy.  I've heard of some people having chemo before surgery, but I had surgery, chemo, and then radiation.  I was a nut job before I had the surgery.  I just wanted that tumor out and I could not understand why everyone wasn't jumping around like I was.  However, don't let them put you off.  Be pushy if that's what it takes.

Mantra

I'm just beyond stumped at how PMH is handling this. You'd think having a patient with cancer in their lymph nodes would put them in some type of urgency mode. Nope. She will be lucky to have surgery two months after diagnosis. In alI likelyhood they are looking at 10 weeks.

I guess unless you have mets, they don't consider it urgent. Of course, they aren't even ordering any scans except a breast MRI so I have no idea how they'd know if she had mets.

I'm trying to get her referred to Sunnybrook since PMH obviously couldn't care less about their patients.

Patriotic

Hi Mantra,



Keep persisting. The problem is that so MANY people have cancer. It took me days and weeks to see the top specialists. Pathology reports can take anywhere from 2-10 days. It's frustrating, I know. The wait is horrible.



I also had a swollen lymph node as the first sign after a so-called negative mammo 6 months prior. I am doing chemo first. So far, so good.



I hope your sister's treatment begins soon. You are a great sister!

KerryMac

Mantra, I am treated at North York General (Rads at Sunnybrook) and have been really happy with my treatment. There is a standard of care at TO-area hospitals, so her treatment would be the same even at a smaller hospital. Unless her case is strange (rare type of Cancer for example) she would get no treatment advantage from a major Cancer Centre. But probably more waiting - I never wait more than 10 minutes to see my BS or Onc, I always waited over an hour to see my Rad Onc at Sunnybrook..

I would also be concerned at the lack of staging scans, they are standard of care I believe. 

Something else to keep in mind - if she is going to have Chemo, a hospital closer to home would be better, I could not have imagined driving the hour from PMH back to our house after getting Chemo, and if she needs Rads as well, that is a long trip every day for a month. Something to think about anyway.

sling99

Mantra,

Sunnybrook may not be any better than PMH. It was almost 10 weeks from my diagnosis to my surgery. That was partly because of coordination with a plastic surgeon for immediate reconstruction. They have many patients and it was usually 2 weeks to get me booked for another ultrasound or MRI. Instead of booking me for a thorough testing all at once they do just one thing at time, wait for results and then book the next test.  I did not see the oncologist until 6 weeks after surgery. During that time you think they could at least speak to you to see if you want the Oncotype Dx test done so as to not waste time. When I finally saw the oncologist she said the Oncotype test results takes a few weeks to come back and you normally need to start chemo within 8 to 10 weeks of surgery. I don't feel they are that proactive or always have your best interests in mind. Probably a symptom of our overburdened and underfunded healthcare system. However I will say that any procedure or chemo treatment that I had done there was done well will no issues.