Wife was just diagnosed, pathlolgy comes tomorrow

yeuker · January 2016

Hey Everyone,

My wife was just diagnosed 2 weeks ago and have been waiting for her pathology report to come in. It is taking extra time (three weeks since biopsy - needed to get extra stains, plus many pathologists off over xmas). We have been told she definitively has breast cancer but outside of that have very little understanding of what we are up against. Her tumor is large (2 inches) which we understand is not everything but worry some. We are in Winnipeg, MB, Canada.

I'm sure you have people like me all the time asking this same question, but I'll ask it too. Any advice for the pathology meeting and beyond? How do I best support her and what do you wish you had known when you were in our shoes? We are doing OK mentally so far, keeping our heads up and busy. Tomorrow will be a hard day but at least we will know what we are battling.

Thanks everyone,

Cory

Moderators · January 2016

Hi Cory, and we are sorry for what you and your wife are going through. The waiting periods are VERY difficult times.

Here is a page that you may find helpful: Questions to ask your doctor.

Also, you may want to be prepared for the pathology report, and access our Your Guide to the Breast Cancer Pathology Report.

We're thinking of you both!

CatsRus · January 2016

Hi Cory, once you know what you are battling, it does get much easier. I found the appointments, tests, etc., to be a very stressful time. Once a treatment plan was in place I felt more in control and it became much easier to deal with. My husband came to all my appointments with me (we are both retired so it wasn't a problem) and him just being there was helpful for me. There will be times to back off and let her rant.... there'll be times to hold her, but you sound like the sort of husband who will recognize what to do when. Trust your instincts. Talk often. Allow her to to talk freely about her fears and/or wishes. Just love her. You will do fine. I am in Ontario and I wish you both well. Let us know when you have the pathology results and ask as many questions as you need.

yeuker · January 2016

Hey Cats,

Thanks for the reply. We are looking forward to a treatment plan and just want to get started on the battle. Knowing your diagnosis without the details or plan is very tough. I plan on attending every meeting with her and our work is very accommodating. We are young(ish) - 37 and 38 but both work at the same company and they will be good to us.

The hard part as a husband/father is that I have always been able to do something to help her and this one is very out of our hands. I know I can help by being there, loving her, listening, being an advocate, helping with diet, exercise, work, home but I can't help fix her body and that seems to be the thing she needs most. Preaching to the choir I know, but at least I got it out :-).

Will keep you all posted with pathology in the days ahead. Thanks for listening and if you have any 'I wish I would have known' advice, I would appreciate it.

Cory

Scwilly · January 2016

Hard as it might be to understand, as Cats has already said, things will get easier once those first few weeks of diagnosis, staging, treatment plans etc are done and put in place. The intense fear and anger will subside and once your wife has a plan then a routine will develop.

Also, don't overuse Dr Google - this site is fantastic for information and also advice, experiences and support - though remember that everyones journey and decisions will not always match yours. Once there is a tx pan in place you can join the corresponding boards/threads to find specific advice.

One of the most important things I found during treatment was the company of family and friends to keep my spirits up and to cover some of the more mundane aspects of life (cooking, errands, lifts etc) Talking about things other than cancer was wonderful. I'm a british expat living in California and had a number of friends over for a week at a time to keep the house going and to keep me company.

I wish you and your wife all the best.

Sarah

CatsRus · January 2016

Cory, I read and read and read some more. Some things I wish I hadn't!! Can't really come up with any "wish I had known" things but I will think on it. I did discover chemo, while not fun, wasn't as bad for me as I had anticipated. Losing my hair didn't faze me much either.... on the other hand the length of time it is taking to grow back is very frustrating. Luckily I love my wigs (I have four - thanks to good insurance :-). My stomach was in knots for weeks after the initial dx and I thought it would never go away, it does. Hang in there.

I do have a small book/booklet created by men for men that you may get something from. If you PM me your address, I'd be happy to mail it to you. It was started by a man here in Windsor, Ontario (where I am) with some contributions from other men whose wives have breast cancer.

CatsRus · January 2016

oops... I may have spoken too soon! It appears my husband gave his copy away. I'll try and get my hands on another copy. However, by coming on here, asking questions, and I'm guessing reading a lot.... you'll probably find most of the answers, hints, etc. anyway. You clearly care, so I am sure you'll do fine. We all wish we could do more when someone we love is sick, they know we can only do as much as we can. Remember to take care of yourself too. It takes it's toll on the caregiver. My husband was very strong while I was in treatment, he felt he had a role.... he could get things for me, cook for me, whatever... once I was out of treatment he crashed a little and it seemed to hit him more then.

phrogger78 · January 2016

I am sorry your wife and you are going through this. I am just starting off my journey but I can at least tell you that my husband just being there, as a support person has been beyond helpful. He doesn't have to do anything really, just sit there and be willing to listen if I need him to. Just something as simple as I went to cut my hair before I start chemo and he went with me and even took pictures. It might sound silly, but it is something he never would have done before because there was no reason to, but this time he felt the need to just be by my side. He isn't one to talk a lot about his feelings on just about anything, but in this case, his presence spoke volumes.

yeuker · January 2016

Thanks for the replies everyone. My wife is tough, and I know she can make it through treatment. I think we have a good support network of friends and family. Our kids are pretty young, 5 and 7 and we have spoken to them about her cancer. These times are tough but we are a strong family and we'll get through it.

BarredOwl · January 2016

Hi:

At the bottom of this page, you can find a more current 2014 revision of the Guide to Your Pathology Report to print out:

http://www.breastcancer.org/symptoms/diagnosis/get...

BarredOwl

Anonymous · January 2016

Looks like you are a great support to her and have support from those around you.

I second the advice of researching as much as you can. I was given the "you have cancer" on a Friday and spent my entire weekend devouring info on this site and went to the appt with my surgeon on Monday well prepared (I even had them fax the pathology to me before the appt). I had never known the difference between stages/grades.. had never heard about BIRAD scores, or triple negative, IBC, nipple sparing surgery, gummy bear implants, cold caps to preserve hair, etc., before I came here.

One thing I've noticed others may have "wished they'd know" was that you usually have time. I found out by accident. I wanted to go the nipple sparing route and it turned out the surgeons I wanted (breast and plastic) had conflicting schedules and I had to wait two months. Most people rush (or feel rushed) into surgery and may not have explored all of their options. Doctors don't necessarily tell you all of the options.. they might just tell you what THEY are comfortable with, or have experience in. You usually have the time (unless it's a very aggressive cancer like IBC) to get second opinions.. find a surgeon that you trust, see pics of the work they've done, etc.

Do your research and ask LOTS of questions! It sounds like you are both strong people and I hope that helps you endure the "cancer ride" and it isn't too bumpy for you.

I'm 5 years out and doing just fine.

Moderators · January 2016

Thanks BarredOwl!!

NatsFan · January 2016

Cory - a hint - get a notebook. We used one of those spiral-topped steno pads as it was small and easy to carry around. As my husband and I did research and discussed things, we wrote down any questions we had in the notebook so we wouldn't forget to ask. When we met with any doctors, my husband was in charge of the notebook. He took notes on what the doctor said so we could refer to them later. Then, at the end of our visits, when doctors asked if we had any other questions, my husband could review his notes and our questions and make sure we'd gotten answers to every one of them. In most cases the doctor would have already answered a question even before we asked it, but in other cases we needed clarification or had questions about something the doctor hadn't mentioned, and the notebook reminded us to get answers while we were with the doctor. Nothing worse than driving home from the doctor's office and remembering some question that you forgot to ask! The notebook was our security for that.

The notebook really worked out well. It gave my husband something useful to do during those appointments, and it allowed me to relax when talking directly with the doctor, instead of concentrating on trying to remember every little detail that was being said. It also gave us a record of what was said during appointments. I can't tell you how many times we went back and referred to it to clarify something in our minds. Also, as questions came up between appointments, it helped us relax because we could write them in the notebook and know we wouldn't forget them at the next appointment.

I want to echo what others have said - you're going through the worst time now. Once you get a game plan in place, it really does get better. I'm eight years out and doing fine, but I still remember how scary those first weeks were. This site has great info and a fabulous support community - just come here whenever you have questions or just need to vent. We'll be here for you and your wife.

LisaAlissa · January 2016

Cory, the notebook is a great idea. But you may also want to record consultations that include a lot of information. (Generally, consultants are fine with recording (if you ask), but if they say no, just take good notes!) It's nice to have the option to "re-listen" to the information later.

Filing System: Separately, you'll want to start a filing system, since you're about to be deluged with paper. Your system should include a portable "most recent" file that you carry with you to appointments--this is often a loose-leaf notebook or a elastic banded pouch.

Make/keep a calendar with all medical appointments/activities/events. You will often be asked "when was ______." A calendar which includes only medical related things can be very handy for that. If you use Google Calendar or something similar, make sure that you won't lose events from that calendar as they become older. (The older ones are the ones that are hard to remember! "When was your surgery date?")

Make a distribution list with specialty/addresses/phone/fax/patient portal (& password info) for all medical providers & hospitals/imaging centers. That way when you need to call one (or refer one provider to another), it will be easy.

Get & keep copies of:

1. all imaging studies (they will provide discs upon request, generally), as well as reports of the evaluation of imaging studies.

2. all procedure reports

3. all pathology reports

4. all medical office notes

5. all (other) test results

6. all bills, EOBs & payments

You will find that while each medical office will tell you that they will send reports/results, etc. Often when you get to the next appt., the reports/results/studies won't have arrived. If you've got them, they can copy (returning the originals to you) so that the appt. will proceed with the doc having the info s/he needs.

A new doc will often want to do blood tests (or other tests) that you've recently had done. If you have copies, you will be able to (1) supply them with the results they need, or (2) let them see the last version, so that they can see if their new results reflect changes.

Generally, an medical oncologist will "lead the team," but you want to know who is going to be the "point person." Copies of everything should go to that doc...and maybe her PCP as well. That's a good question to ask when you have your appointment.

Finally, if you're meeting with a breast surgeon, you may also want to meet with a medical oncologist before you finalize your treatment plan--especially any surgery, as increasingly we're hearing recommendations for neo-adjuvent chemo (before surgery chemo).

HTH (and best wishes!)

LisaAlissa

etc:spelling

yeuker · January 2016

Wow, thanks so much for the kind and informative replies. I did get the very good pdf on how to decipher the pathology report and read it (thanks owl and mods). We have a notebook and a google drive folder setup (similar to dropbox) to keep all paper and digital docs. The google calendar is a great idea and so is having copies of all the imaging, blood work etc. Tomorrow will be really hard but we don't have a choice but to cross that bridge so we will. This is already my favorite place to hang out that I never wanted to be :-).

Kicks · January 2016

A couple of other thoughts -

Be sure that SHE puts you down as approved by her to talk to her Drs or legally get any information from them when she is not present (HIPPA). (Unless she is uncomfortable with giving the permission.). Every Dr I have has Hubby and Son (adult) listed with each one just in case either of them need (or feel the need) to talk/get information from them or if the Dr has info on me that needs to be gotten/given to them directly.

Get a notepad (the old spiral bound ones) and keep it handy to write down any and all questions she and you come up when they are thought of - can be sometimes easy to forget them it not written down/recorded. Make a second copy to give the Dr. Sometimes, they can combine some of the questions in a single answer. Be sure that all are answered and not skipped. If a questions comes up in an answer - ask for clarification (in different words possibly) until it is understood. Also record 'anything' that seems strange (it may not be) during TX (treatment) rather than just trying to remember what and times if needed.

I use my smart phone to record what is said at appts so if needed it can be reviewed and hear the exact words used.

yeuker · January 2016

OK results are in on the Biopsy but I guess there are other things that we will not know until after surgery. She has double negative breast cancer, we will not know the her2 until after surgery. The cancer is approximately 2cm. Grade 3.

Suggested tx is surgery in 1 week, a lumpectomy or mastectomy (our choice). 8 weeks later we will start chemo. After that is radiation.

Could anyone point me to some good advice on what to do or read next? I.e. Is there a good forum for the tripple negative? Also looking for good advice for my wife on the pros / cons of lumpectomy vs mastectomy.

BarredOwl · January 2016

Hi Yeuker:

If HER2 testing has not been done, then she is not necessarily "triple negative".

Also, HER2 testing is almost always done for "invasive" cancer before surgery, because if found to be HER2-positive, then consideration would be given to "neoadjuvant" treatment with chemotherapy plus HER2-targeted therapy prior to surgery. Similarly, if known to be "triple-negative", neoadjuvant chemotherapy would also be considered.

So, do you know if the cancer is non-invasive "Ductal Carcinoma In Situ" (DCIS) or if there is some invasive disease present (e.g., "Invasive Ductal Carcinoma" (IDC)?

Then we will know better where to direct you.

BarredOwl

yeuker · January 2016

Thanks for the reply. It is definitely aggressive invasive and not in situ. And yes it is ductal. The her 2 has not been done and they told us today that it would not be done until surgery. Should I call and ask why?

BarredOwl · January 2016

Hi Yeuker:

I edited my post above to add that "triple-negative" is also often treated with chemotherapy prior to surgery.

I understand she has ER-negative, PR-negative, invasive ductal carcinoma. However, HER2 testing has not been done, and will not be done before surgery under the current recommendation. Thus, she would be foregoing the possible option of "neo-adjuvant" treatment for what is either HER2-positive disease (ER- PR- HER2-positive) or triple-negative disease (ER- PR- HER-negative).

I recommend that you inquire why HER-2 testing has not been done, since it is indicated for all invasive disease under the National Comprehensive Cancer Network (NCCN) guidelines in the US anyways.

Also ask if you can consult with a Medical Oncologist prior to finalizing the surgical plan.

Lastly, ask if she has time to seek a second opinion.

BarredOwl

LisaAlissa · January 2016

Not only that, you need to have a consultation with a medical oncologist before surgery. As BarredOwl said, neoadjuvent (before surgery) chemo is a real possibility with what you've mentioned so far.

Is the surgeon you've seen a breast surgeon (practice either limited or mostly devoted to breast surgery...attends conferences like the recent San Antonio conference, etc?) if not, you may want a second surgical opinion as well (from someone like that...)

HTH,

LisaAlissa

Eta: ah. I see BarredOwl and I are on the same page.

ElaineTherese · January 2016

I agree with BarredOwl.... I wouldn't schedule surgery before knowing whether or not your wife is HER2+. I'm HER2+ and was only able to get Perjeta (new targeted therapy) as part of a neoadjuvant chemo regimen prior to surgery. Since HER2+ cancer is so aggressive, I was happy to be able to get both Perjeta and Herceptin as part of my regimen.

CatsRus · January 2016

I didn't get the results of either my ER/PR or HER2 testing until after surgery (I am also in Canada). My initial result on HER2 was equivocal so I had to wait a further week or so until the pathology could be sent to Toronto. That said, asking the question about it is a good idea. I opted fir mastectomy over lumpectomy but it was a personal decision and not based on any research, so I don't have any advice for you in that regard.

Sending good thoughts your way.

BarredOwl · January 2016

If you would like more input from people who are actually HER2-positive or triple-negative, you could start a new thread and ask whether they consulted with a Medical Oncologist prior to surgery and sought a second opinion:

HER2-positive Forum:

https://community.breastcancer.org/forum/80

Triple-negative Forum:

https://community.breastcancer.org/forum/72

You may find out more about when such patients proceed to surgery in the first instance as well, although it is not a replacement for a consultation on this question with a Medical Oncologist.

BarredOwl

CatsRus · January 2016

All good advice above but it's not always that easy in Canada. Time to advocate Yeuker....get on the phone and ask questions....good luck to you both.

BarredOwl · January 2016

And here is an excellent post from Beesie about mastectomy and lumpectomy considerations:

Lumpectomy vs Mastectomy Considerations (scroll up a bit to Beesie's post of Jun 20, 2013 12:00PM)

https://community.breastcancer.org/forum/91/topic/...

BarredOwl

MLP3 · January 2016

Yeuker- Lisa Alissa and barredowl are both correct. Her-2 is required when IDC is diagnosed.

By all means call and advocate why it wasn't done. And maybe seek a second opinion. You do have time.

Good luck:)

yeuker · January 2016

Thank you all for the replies. I will inquire tomorrow why

HER-2 testing has not been done, since it is indicated for all invasive disease under the National Comprehensive Cancer Network (NCCN) guidelines in the US anyways.

This is a very good question and I did ask why it wasn't done but was told that it wouldn't be done until after surgery. Is neo adjuvent chemo something relatively new?

As for our surgeon she is very experienced and specializes in breast cancer surgeries. From what I understand we are in good hands with her.

Thanks for the great link on mastectomy vs lumpectomy.

I agree that tx in Canada is likely different. Free which is awesome but we have less control over who treats us and who we see and when. For example they may say we can see an oncologist but it may take 6 weeks prior to getting in to see him or her.

Our pcp is a very good internal medicine doc and I will speak to him tomorrow an bout the HER2 and oncology consult.

BarredOwl · January 2016

Hi:

Neoadjuvant treatment in the setting of HER2-positive disease or triple-negative disease is not new, although always evolving. Neoadjuvant treatment (like post-surgical adjuvant treatment) is within the area of expertise of Medical Oncologists (as opposed to the surgeon). It is an option under the guidelines, but I do not know what the criteria are for recommending neo-adjuvant treatment versus proceeding to surgery in the first instance. There may be some differences in practices between countries.

I appreciate there may be challenges within your system, and do not know what is a reasonable time-frame in your wife's particular case. Hopefully, you can find out more from her providers.

BarredOwl

ChiSandy · January 2016

Cory, I’m surprised--I had my ER, PR and HER2 status less than 48 hours post-biopsy. Canada is usually leading-edge when it comes to such things as new protocols (such as the 16-tx partial-breast rads), so I’m surprised. Can’t be a matter of economics, as neoadjuvant chemo/targeted therapy can shrink tumors to such an extent that less-invasive surgery and overall less-costly treatment over time is possible.

What I did as soon as I was diagnosed was to put together a master notebook. I already had a Levenger Circa notebook, small disc rings, paper and punch already, but Staples sells a system called Arc that is identical and far less expensive. (There are also more Staples stores than there are Levenger shops, and you don’t have to order online and wait for it to arrive). It consists of interchangeable plastic or leather covers in various sizes, paper, dividers, pockets, and various diameter flanged plastic discs. This allows papers to be easily inserted, removed or rearranged without having to open looseleaf rings. I set up dividers and file pockets for journal, after-visit summaries, pre-op, surgery, post-op, medical oncology, genetics, radiation, followup, educational materials, prescriptions and bills/receipts. At each phase of my treatment I was able to simply remove a section and slap 1/2” rings and new covers ($1 per set) on it. The master notebook has 2” disc rings. The punch allows you to fit every document into the notebook.

BarredOwl · January 2016

Hi:

Maybe also inquire whether there is some sort of "tumor board" or analogous multidisciplinary group of experts that includes a medical oncologist, which regularly reviews cases at the hospital she is being treated. The board might consider her case, including tumor size (estimated ~2cm), current known ER neg, PR neg status, and other pathological features, age, and clinical presentation, and provide their input about whether having HER2 test results prior to surgery (either positive or negative) would alter the recommended treatment plan of surgery first or not.

BarredOwl

Wife was just diagnosed, pathlolgy comes tomorrow

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