First appointment with Oncologist - advice on questions to ask?

capippy

Hi ladies - I'd love some help / advice. After waiting what seems like a lifetime, I finally have my appointments at the cancer clinic tomorrow - radiation at 9am and oncology at 1:30pm. It seems like at each of my meetings with the surgeon I've been like a deer in headlights when she's told me something unexpected, and after I leave I have a million questions. (Most of which I've found some answers for here. )

Here is my sitch:

July 2: lumpectomy for ADH cells found by biopsy. Received results on July 24th: Discovered two small tumours (4mmx4x3 and 3mmx3x2) - multifocal mucinous features, grade 2, plus dcis and lcis cells.

August 7th: re-excision and SNB. Received results on August 31st: clear margins, 4/6 lymph nodes had isolated tumour cells.

So now I finally have appointments tomorrow to get this show on the road. I have a list of questions to ask but I'm sure when I get in there I'll be thrown again so I want to prepare myself as much as possible. Obviously I want to know the big things: is double mastectomy an option or even advisable, chemo, radiation, tamoxifen, what comes first, will radiation affect reconstruction, etc etc etc. I have no idea if they do the oncotype testing automatically (though I know it is covered in my province).

Will they do other tests before advising treatment? Do they do MRIs, CTs, pets..bone scan, blood work? - all new things to me. Do they just dive in based on pathologies from lumpectomies?

I have a million questions on the isolated tumour cells. I know it is technically considered node negative but I've been reading a lot that says it is perhaps under treated. I also want to know if the lymph nodes they removed were in order - i.e. took four in a row with ITCs and kept going until they had two clear ones, or if they took a big bunch and out of the six, four randomly had ITCs.

Ug, so many questions.

Can anyone give me some other questions I should be asking, or give me an idea of what is going to happen at each of those appointments tomorrow? I colleague of mine told me she was started on chemo within a week of her first oncology appointment! Good lord - is that common? I need time to process. But not too much time - I'll go crazy waiting again. Sheesh - can't please me. lol

Sorry for rambles. I'm actually excited - is that the right word? - to get on with this tomorrow. I feel like I've been in purgatory all summer, waiting, waiting, waiting. Now - just want to get on with treatment and get this all in the rearview mirror. Perhaps not so much 'excited' as relieved to just GET ON WITH IT.

Advice welcomed!

Thanks (hugs)

CA

keepthefaith

capippy, sorry you are going through this! I was kind of in a numb state at that point. I took a dear friend with me and she recorded the meeting with my Drs. If you have a stable person that can go with you, I would take them. It is a lot to take in at one time. If your medical center has a nurse navigator, they may be able to guide your through the process, etc., also. They will probably discuss your treatment options with you. I didn't start my chemo for several weeks after my appt. They may order more tests before they determine a treatment plan; BRCA, onco-score, scans, etc. You are right; you will probably feel better once you get started and have a plan in place. Best wishes!

Anonymous

Ask them the questions you'd ask someone you were hiring to remodel your house, e.g.: how long have you been practicing, do you specialize in breast cancer in particular (you want someone who does if at all possible, and not simply cancer in general); how do you stay current on new treatments; what is your standard protocol in txing a woman with your particular dx; do you participate in clinical trials; eg.

And yes, for heaven's sake take someone with you who can take copious notes. Ask for HARD copies of all pathologies, blood tests, etc.

I would get a second opinion (interview one more oncologist) before moving forward. I know you are anxious to get this over, but it's your LIFE. Don't you want the best expert to do the job? I did.

Chemo after the first meeting with an oncologist seems pretty unusual from what I've read about here, but I suppose it could happen.

Good luck.

Claire in AZ

vlnrph

As far as your pathology report, during the operation, a surgeon cannot see isolated tumor cells or micromets (what I had): they just cut out whatever lymph nodes are showing as sentinel, by taking up either the radioactivity and/or dye that was injected. Even when the lab does a quick look during the procedure, things may appear OK but the cancer can be hidden. Only when the tissue is sliced and examined more carefully can a final conclusion be drawn. That is part of the reason why it takes so long to get results.

What prompted your initial biopsy? Perhaps there was a suspicious mammogram finding and then an ultrasound. An MRI might be a good idea prior to making decisions about further treatment however other scans are usually only done if there are symptoms of widespread disease because they are expensive. Baseline blood work and maybe a chest x-ray could be obtained since they are cheap.

Ask about referral to a lymphedema therapist. Your risk is probably low but it can develop whenever there is trauma to an area. Arm, wrist and hand measurements should have been taken earlier for comparison.

I agree with keepthefaith about having another person with you in addition to taking advantage of whatever educational services might be available. Hopefully you will also get written material to read alongwith a big folder to keep it all organized. Good luck! It sounds as though you are pretty well prepared already.

SummerAngel

As far as advice I'll just repeat what has already been said, that having someone go with you is a good idea and a second opinion is also a good idea.

Something I found interesting about the Oncotype test is that my second opinion "expert" oncologist said that if I had only had right-side cancer he wouldn't have even run an Oncotype, because it was "small" (1.1cm) and the Ki67 was 10% (relatively low). Weird.

Both of the oncologists I saw agreed that isolated tumor cells are "meaningless" as far as treatment is concerned.

Rockym

First off, sorry you have found yourself here. I always have advise :-), it's my nature, but without knowing how old you are none of it would be valid. I used a Lifescribe pen that I had at home to take notes and record each and every doc visit. Best thing I could have ever done. I had micromets in my lymph nodes and in 2011 it seemed there was differing opinions on whether that was a positive node or not. At that time, I had to see it as positive to make my treatment decisions. I looked up isolated tumor cells in relation to 2015 and what I found is it's pretty clear they are not considered positive. Node involvement and age... two big factors in treatment decisions. Looking at your stats, I can only guess you are relatively young. If I had those stats back in 2011, I would have never seen an oncologist. Surgery, rads, hormonals and done. Also, without family history... well you must know that can make a difference too.

Treatment can be completely different if no one in your family ever had it versus many female relatives. I guess what I am trying to say is at this point you are really planning your treatment for the future so it's important to take all aspects into account. Good luck.

See info. below:

Isolated tumor cells — Isolated tumor cells are defined as small clusters of cells not greater than 0.2 mm, or nonconfluent or nearly confluent clusters of cells not exceeding 200 cells in a single histologic lymph node cross section [55]. Prognostically, they appear to do as well as patients without pathologic node involvement. According to the Tumor, Nodes, Metastasis (TNM) staging system, isolated tumor cells are designated as pN0(i+). Of note, the finding of isolated tumor cells in lymphatics as a result of iatrogenic displacement from core biopsy procedures has been observed and is not considered to be clinically significant [56-59]. (See "Tumor node metastasis (TNM) staging classification for breast cancer".)

Micrometastases — Micrometastatic nodal involvement is defined as a cluster of cancer >0.2 mm but no greater than 2.0 mm. If present, this is designated pN1_mic in the American Joint Committee on Cancer (AJCC) staging system. Of note, data suggest that patients with pN1_mic breast cancer have a worse prognosis compared with those with node-negative breast cancer. (See "Tumor node metastasis (TNM) staging classification for breast cancer" and "Prognostic and predictive factors in early, non-metastatic breast cancer", section on 'Nodal involvement'.)

capippy

Thank you so much for the feedback and information. (And support! So appreciated!) I feel much better to know that at least I'm going in the right direction.

I'm in Canada - I wonder does that affect how you 'choose' your treatment team? I've not actually had a say in anything so far - my family doctor (who I adore) referred me to the surgeon, who referred me to the cancer clinic. They called with name and time of appointments, there was no discussion. I wonder do I then have the option of seeing another, or do they review cases consultatively? I'm 46 - the whole process was kicked off my mammogram and ultrasound. How does age affect chemo - younger more likely?

vlnrp - thanks for the info on the itcs - so I can't assume that they got four and then two were free? That makes me nervous. The thing I'm most scared of are those cells in my lymph nodes- even if they do 'classify' them as node negative. They are there, you know? They exist. Unnerving.

Rockym - how did they treat your itcs, given that they were considered positive? I'm almost wishing they would treat them as positive to make sure they are taken care of.

I wonder why I need to meet with Radiation before the Oncologist? Wouldn't the team discuss options with me first? hat will teh ydo at that appointment, I wonder. This time tomorrow I'll know more, finally.

Thank you all for the invaluable info,support, shoulders.

CA

queenmomcat

Capippy: can't speak for Canada precisely but U.S. isn't so very different, I've gathered. Here (and I'm betting there as well), there are radiation oncologists and 'medical' oncologists; the RO oversees radiation treatment, and the MO is the one who (as I understand it) prescribes/oversees chemotherapy and any hormonal therapy as appropriate. Don't read too much into which one you see first; that may just have been who had an appointment opening first. I ended up seeing my MO first, even though I'd use his services second as I ended up NOT needing chemo.

Good luck! and please do come back around to let us know what your plan is?

SummerAngel

I was 45 at time of diagnosis and it had no bearing as to chemo, nor did the fact that I had bilateral tumors or itcs. There are a number of factors in determining the need for chemo, though. Doctors here in the US look at oncotype score and node status (again, itcs are negative), as well as grade, ER/PR/Her2 status, etc. You could read up on the NCCN guidelines for breast cancer, they're very helpful: http://www.nccn.org/professionals/physician_gls/f_...

capippy

Thanks queenmomcat - I will let you all know for sure!

SummerAngel - I'm so relieved to see that I have a lot in common with you (46, multifocal idc, lcis, itc) and you didn't have chemo. Oh, I hope I can avoid it. That link is fantastic - thank you so much. A lot to read tonight.

Rockym

capippy, from my experience and research, age can make a big difference as the younger ladies either have more aggressive cancers or they simply have so many years ahead of them that chemo is sort of insurance. Chemo is a nasty thing and can have all kinds of freaky side effects (as all the treatments), but the younger you are, the easier it is to bounce back from chemo. Also, my recollection of Canada versus U.S. is that your health care system kinds dictates what treatments you get. I could be wrong there, but I know here in the U.S., if you have good insurance (as I did), I called the shots. I picked who I was going to see, I put together my team and then I let those doctors help me make my choices. It was very exhausting to research every little detail, but I can tell you I have NO regrets with any of my decisions.

You meet with the RO because RADS are almost a given. Even if you did an MX, you may still need RADS. Since I was also 46 when all this began and my Oncotype was 22, I decided to do chemo light :-). One MO wanted to do 6 rounds of TAC and I went with my 2nd opinion guy and did 4 rounds of TC. Because the nodes had micromets and for some reason my SN was clear after surgery, the whole thing just felt like a mess to me. I wanted nothing to do with chemo, but I had young kids and was scared. In the end, I am way glad I did the chemo since I went on Tamoxifen (ER+ PR+ lady), but after a week couldn't handle it. I take nothing now except an 81mg asprin a day, but had I not done the chemo, I may have felt like I had to lower my quality of life with the hormal pills.

Good luck tomorrow!

capippy

Thanks, Rockym!

Had a great day and feel like I'm making progress. I met with the RO this morning (he was HOT, nice bonus...lol) and he said he would be very surprised if MO recommended Chemo (they work very closely together). So we reviewed every thing together, her answered all my questions, was so wonderful and patient! We set appointments starting next week, and would start rads the following Monday (17 sessions - three weeks + 2 days.) I was euphoric that the end was near.

Then I saw the MO and we had a much deeper conversation about my anxiety over the ITCs and fear of missing a cell or two in the nodes. She said that I was extremely low risk (mucinous, tiny tumour, only ITCs in nodes, ER/PR+, great margins, etc) and normally she wouldn't even recommend the oncotype test, BUT that given my anxiety and the fact that she is SURE it will come back low which will give me reassurance, we've decided together to have the test and put off rads until we get results back in 2-3 weeks. She said if it is borderline she still will not recommend Chemo, only if it is high. I feel good about this decision. If it comes back very low I'll have 100% confidence in rads+tamoxifen was the right decision. If it is borerline I can consider second opinions. Hopefully it will be low!!!

Rockym

Glad to hear that all went well. It's nice having a positive feeling when the doctors are well informed. Hot docs work too :-). My MO and foot doc were a pleasure to look at. I am glad the MO will get you the Oncotype test. Just be aware that even if the number is intermediate or high, it only means that chemo combined with hormonals will most likely zap your individual tumor cells if they are floating around and the healthy ones too. When the number is low, it means the chemo won't work well on leftover anything. Also, high or low. please don't push for chemo because of anxiety. Take an Ativan or learn breathing exercises. Chemo sucks! For me it was "doable" as they say, but the side effects during and after just don't always make it worth it. For some, there is permanent damage from the poison. I believe I looked up my TC years ago and it was the same crap that was in ancient orange back when. Not fun. My hair grew back, but not everyone's will. My chemo brain and instant menopause combined still cause me problems. Like I said, I was glad I did it in the end because of other circumstances, but I agree with your RO. Just remember, to a hammer everything is a nail. That's how many of the doctors roll. Good luck!

capippy

Thank you for that excellent perspective. xo I'm going to hope that the number is ridiculously low and I'll never have to look back and wonder! How wonderful would it be to have all this put to bed before Halloween. Thanks for the advice and support - always so appreciated. I'll update when I get my (incredibly low) number...lol

capippy

my score was 17! No chemo for me.

Rockym

Congratulations!