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Hello from Calgary - newly diagnosed and haven't started chemo yet
SusanC
21 Posts

I'm looking forward to getting to know others going through this journey. I was just diagnosed with breast cancer early January and meet with the oncologist this week. Mostly just anxious about the future at this point and trying not to look too far ahead as chemo is not on anyone's bucket list!

37 Replies
Dave58
424 Posts

@SusanC Hi Susan, I'm sorry you have the need to find us but so glad you did ! You'll never meet more caring and supportive people anywhere else. We're a family here and now your a part of this family. This is your safe place to chat, rant, scream or just get answers to any question you want. We'll stick with you every step of your cancer journey we won't just post and run.

I'm going to call in some awesome Ladies who know this area of cancer much better that I do. @Whitelilies @S2020 @Trillium

SK22
18 Posts

Hi @SusanC, I'm sorry for your recent diagnosis, and welcome to this forum! I have found a lot of relief just by joining this group. We will all get through this! One day at a time :)

I am still currently undergoing radiation treatment. I guess you are having neoadjuvant therapy. I am also going to tag @Runner Girl who has one of the most comprehensive list of questions to ask oncologists, in case you need help there :) Also, when I met with oncologists, I wasn't allowed to be with anyone, so i asked if I can record our meeting, which they both agreed too, good for me! Sometimes, I feel that I am hearing them but my mind is wandering somewhere.. So playing it back helped me a lot.

Also, feel free to reach out anytime! Somewhere, someone will be in touch! :)

Runner Girl
2726 Posts

Hello @SusanC Thank you for the tag @SK22

I'm sorry for your diagnosis. I too am in Calgary and was diagnosed with breast cancer in 2018. The staff at the Tom Baker are fabulous and make every effort to take the best care of you possible.

As mentioned I have Lists. Here is my list of questions for your onocolgist. Use the ones that are pertinent to your situation.

Questions for Oncologist
• Exactly what type of breast cancer do I have?
• How big is the cancer? Where exactly is it?
• Has the cancer spread to my lymph nodes or other organs?
• What’s the stage of the cancer? What does that mean?
• Will I need any other tests before we can decide on treatment?
• Do I need to see any other doctors or health professionals?
• What is the hormone receptor status of my cancer? What does this mean?
• What is the HER2 status of my cancer? What does this mean?
• How do these factors affect my treatment options and long-term outlook (prognosis)?
• What are my chances of survival, based on my cancer as you see it?
• Should I think about genetic testing? What are my testing options? Should I take a home-based genetic test? What would be the reasons for and against testing?
• How do I get a copy of my pathology report?
• If I’m concerned about the costs and insurance coverage for my diagnosis and treatment, who can help me?
• What are my treatment choices?
• What treatment do you recommend and why?
• Should I think about taking part in a clinical trial?
• What would the goal of the treatment be?
• How soon do I need to start treatment?
• How long will treatment last? What will it be like? Where will it be done?
• Should my biopsy tissue be sent for a gene expression test to help decide if chemotherapy might be helpful for me?
• What should I do to get ready for treatment?
• What risks or side effects are there to the treatments you suggest? Are there things I can do to reduce these side effects?
• How will treatment affect my daily activities? Can I still work fulltime?
• Will I lose my hair? If so, what can I do about it?
• What are the chances the cancer will come back (recur) after this treatment?
• What would we do if the treatment doesn’t work or if the cancer comes back?
• What if I have transportation problems getting to and from treatment?
• How will we know if the treatment is working?
• Is there anything I can do to help manage side effects?
• What symptoms or side effects should I tell you about right away?
• How can I reach you on nights, holidays, or weekends?
• Will I need to change what I eat during treatment?
• Are there any limits on what I can do?
• Can I exercise during treatment? If so, what kind of exercise should I do, and how often?
• Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed?
• Will I need special tests, such as imaging scans or blood tests? How often?

Let us know once you have your treatment plan.

Runner Girl

Whitelilies
2267 Posts

@SusanC Hello Susan and welcome to our caring community….I am sorry for your reason to find us here; but glad you did. You have received some wonderful input….and please know, @Runner Girl makes THE best lists! (I am going to print this one, out for me!)

I will include, for you, a link below (Breast) where you can read through, of others' experiences, perhaps similar to yours….and feel free to reach out/'tag' anyone, if you wish; just typer “@”screen name (no space after @) and a few names drop down; select name you wish; turns blue; they receive your message.

Please, feel our support!

Welcome Susan,

Whitelilies

#Breastcancer #Newmember

supersu
1098 Posts

@SusanC

good morning from neighbouring Edmonton.

I laughed out loud at your ‘bucket list’ comment. 😂

I was on the fast train to chemo when I was diagnosed with my breast cancer in 2020….until a physician friend told me about the ONCODX score test. I advocated for it, and as a direct result of that information, it was determined chemo would be of very limited benefit.

not sure if your cancer type would qualify; but it is worth the question. apparently, due to it's cost it is not done routinely, BUT in my case it was really financially beneficial.

let us know how things move along. I refer to my cancer experiences not as a journey or a fight, but rather as a ‘story’. I am happy to share mine anytime - just ask. no question is too big or too small.

cheers
su

#welcomenewmembers #breastcancer #OncotypeDx

SusanC
21 Posts

I'm not clear on where I reply to whom, so I apologize if I screw it up. Newbie issues. Wow, thank you for welcoming me and the tag to Runner Girl as I could use all the help I can get. I'm off to the geneticist this morning to see if I have the breast cancer gene, since my mother died of breast cancer at 49. Of all the wonderful things I could've inherited from her I strongly dispossess that family heirloom! Will have to wait a month for results.

Runner Girl
2726 Posts

Hi @SusanC

To reply to a specific member you type the @sign followed by their screen name. A blue box should appear, sometimes it takes a few seconds, from that box you can select the correct person. Their name will turn blue, as yours has above in this post.

Good luck with the genetic testing, hopefully it's not something your mom passed along.

Runner Girl

Mosi
90 Posts

I’m fairly new to the breast cancer journey myself having been diagnosed September 2021. I started with chemo and had my last session December 31. My oncologist laughed at my begging for more chemo less surgery and radiation. I have had an incredibly positive experience with chemo with the lump now less than half the size we started with. I too am in Calgary and Tom Baker has been wonderful at chemo treatments. Please know that it doesn’t need to be too miserable. I have surgery February 3 and that terrifies me. I hope your oncologist is as wonderful as mine has been. Let us know how you make out. My heart is aching for you.

Runner Girl
2726 Posts

@Mosi

I'm glad to hear you are having good success with chemo and that the Tom Baker is still as good as it was when I spent my time there in 2018.

Surgery was the easy part for me. I had a lumpectomy and sentinel node biopsy. I had little to no pain and didn't need the pain medication. I had 3 days off work and then went back - being mindful not to lift anything, etc.

Radiation was scary because it wasn't something tangible, that you could see. But the techs were fabulous, even better than the chemo nurses. Follow their tips and let them know right away if you are having any skin issues.

Runner Girl

Mosi
90 Posts

Thank you @Runner Girl.

SusanC
21 Posts

@Mosi and @Runner Girl I appreciate the insights. Good luck with surgery. I’m most scared of chemo so good to know it may not be the nightmare my mother went through in the 80s. Sure you’ll heal nicely after surgery and put this behind you. My geneticist was so knowledgeable. Feel like I had a class in genetics.

Mosi
90 Posts

@SusanC and @Runner Girl. My daughter is waiting for genetic testing and I am so thrilled she has that option. Usually reserved for women whose mother was under 50 at diagnosis but I am 61. Because this cancer is generally found in much younger women her dr thought she should have the testing. Hopefully will not have to deal with the choices they have for us now. Ok they aren’t really choices. 😏

Runner Girl
2726 Posts

@Mosi @SusanC

I agree, they aren't really choices - but - thank goodness we have options for treatment now and thank goodness for better surgical options, drugs to combat the nausea, drugs like Herceptin that took care of my HER2+ status, treatment has come such a long way and I hope it just continues to get better.

I wish there was a support group in Calgary.

Runner Girl
2726 Posts

@Marjorie Rose

Have you looked at Wellspring? https://wellspringcalgary.ca/

S2020
1032 Posts

Hi @SusanC, @Mosi & @Marjorie Rose

While I am not glad anyone has cancer, I am glad you have found other members familiar with the health centre where you are, or will be, receiving treatment…a community within a community!

I will second @Runner Girl‘s recommendation for Wellspring. I have participated in many of their programs since my diagnosis in the spring of 2020, and the programs have been very helpful. In addition to Wellspring Calgary, the following branch of Wellspring also has an extensive list of online cancer support programs open to all Canadian patients throughout the pandemic:

https://wellspring.ca/online-programs/programs/all-programs/

I would also highly recommend the Healing & Cancer Empowerment series with oncologist, Dr. Rob Rutledge:

https://healingandcancer.org/empowerment-series/

Wishing all of you the best possible outcomes with your treatments. The Cancer Connection community is here for you!

Coco7
9 Posts

Thank you for this list @Runner Girl So very helpful with my brand new breast cancer diagnosis as well. I haven’t seen the oncologist yet either - still dealing with the original breast surgeon and plastic surgeon and then I guess it’s off to the oncologist? Had the MRI yesterday and still waiting. I guess I’m still in the dark about my future at this point so this list really helps 🙏

Runner Girl
2726 Posts

@Coco7

You are most welcome for the list. Have you had your surgery as yet and have you received the results? I have lists for those as well if you'd like that information.

Coco7
9 Posts

I’m in between my first lumpectomy and my second to remove more @Runner Girl. We know the nipple is being removed since that’s where the cancer is however we are still awaiting the MRI results from yesterday and the further pathology report ruling out any invasiveness. Still so early in my diagnosis ~ in The meantime I’m so thankful for this forum and all of the wonderful programs I’ve just joined at Wellspring. I volunteered for them many years ago as a driver when my mom passed away from cancer and so now I’m on the user end and the programs are just what I need at this time. Thank you for helping 🙏.

Hezz
116 Posts

Welcome to the group no one wanted to join!

I'm also in Calgary and have been treated well at Tom Baker. I was diagnosed in late January 2020 (at the age of42) and had the full meal deal with my ER+PR+HER2- IDC. I decided on a double mastectomy + 5 lymph nodes taken, 5 months of dose dense chemotherapy and reluctantly agreed to 16 rounds of radiation.

Unfortunately, due to the fast growth of my tumor and it's involvement with my pectoral muscle, I couldn't begin reconstruction until after radiation ended which has been a struggle of 6 surgeries but I'm nearing the end.

Get to know the nurses of each doc! They are such a help!!!

Hezz :)

Skye2
222 Posts

Hi @SusanC

Welcome! Yes! You have come to the right place! The people here are extremely knowledgeable and supportive. ❤️!
I was diagnosed last March with cancer in both breasts, as well as my lymph nodes, and had a double mastectomy, lymph nodes removed and tissue expanders placed for implants later. I then did chemo, and had more surgery to remove more lymph nodes, and am now just finishing up radiation. The “waiting” is the worst. You don’t know where to put yourself or how to not let your thoughts get the better of you😢. …we have all been there! Let us know how we can support you. You are not alone!

Sue

SusanC
21 Posts

@Coco7 I hope you recovered quickly from your surgery and will the next also. I will check out Wellspring too. Thanks for the recommendation. My husband's client raved about Breast Cancer Supportive Care so I called them to set up a file, then they book you in with a doctor who goes over your case and looks at your treatment plan. Maybe just for piece of mind, but I figure more knowledge about what I'm facing is good. They also offer counselling for the whole family. I just told my two bio sons last night (19 and 21). Lots of crying and hugs, but also support and positivity. My husband told his 3 bio son, my stepsons and so now I have hot and cold running chauffeurs to chemo which starts Feb. 4th. Sounds like I do 4 rounds, then surgery likely in May. Yet tbd what type of operation I need until my genetic tests come back as my Mom died of cancer at 49. I'm 54, Her2 and estrogen positive. Stage 2. I know chemo has come so far from the 80s when she had it and chances are great for us all. I'm turning into a regular motivational coach. Or trying to anyway. Stay positive. Get through it, and as a friend said ‘a burden shared is a burden lessened’. I did think it strange that they didn't move to surgery first, but I guess with my case chemo first, placing a clip in so they can still find the area to remove, then radiation is the best way to go. I appreciate this forum and all you lovely people here, even as we don't want to be.

SusanC
21 Posts

@Hezz I appreciate your sense of humour in the face of a long journey. You are all truly such brave souls in this club no one wants to join! Now that I've got my treatment plan, I'm a little less worried, even as I can't sleep well worrying about the next 6 months. I'm not really sure on the difference between chemo and radiation. All I know is I get chemo first, then surgery (yet tbd the type depending on breast cancer gene test result), then radiation, then hormone therapy after that. Turns out even after menopause I'm estrogen positive. Tell that to my hot flashes ;) I have only been to Tom Baker once for my pre-treatment blood work and was impressed by the nurses and the organization of such a busy place during Covid. Here's a question for the more experienced among us. When does your hair fall out and do you also lose eyelashes? Has anyone been able to work during this or should I take advantage of my short term disability and say ‘see you in summer’?

SusanC
21 Posts

Thank you @Skye2. This is a wonderful place of support and knowledge that I appreciate. You have been through the ringer and I hope you're over the worst and on the mend soon. The waiting was terrible especially over Xmas and New Year's. Then we waited to tell our kids until I had my treatment plan in place. So far I've seen the geneticist, the surgeon and the oncologist. Last week was a test of some sort every day. I'll be happy if I never see Mayfair Diagnostic, even if they were quite nice. One drug they plan on giving can be a ‘heart stunner’ so getting and electro cardiogram. Heart stunning is not something I really want thanks! Hard not to worry about an uncertain future, even as I know that this is NOT my mother's breast cancer and survival rates and treatments are much improved from the 80s when she got it. Maybe I'll run across some of you wonderful ladies on my journey through Tom Baker. Any pro chemo tips to share? I figure, lots of reading, podcasts, patience, cute chauffeurs (sons and husband) to and from and lots of resting for 3-5 days after. Did anyone experience brain fog? I work in the financial realm and was thinking of working the two weeks in between treatments, but now I'm thinking with so many nitty gritty details and the fast pace of the work, I'm worried I'll really screw up and be stressed just getting back up to speed to leave and hand off work again. Might just use my std and take the time off. Learn a new language in between naps and wig shopping?

SusanC
21 Posts

@supersu thanks for the heads up on ONCODX. I'm Her2 and estrogen positive so chemo will benefit me. I appreciate all the info and knowledge of my fellow travellers on this hellish road. I like your ‘story’ idea as I write fiction in my spare time and sure writing will help me through this.

SusanC
21 Posts

@Marjorie Rose you could also check out the Breast Cancer Supportive Care services as they're a group of doctors who can provide second opinion, info on your treatment plan, and lots of counselling and supports. I'm early in my journey and have just set up my file with them, so waiting for an appointment with one of their doctors. I'm mostly looking for them to demystify this journey for me and set me up with counselling for myself and our 5 boys and my husband.

Coco7
9 Posts

@SusanC thank you for sharing your journey with me. It sure helps to know we are not alone. I had some positive news earlier in the week thankfully from the MRI that showed no further spreading of my cancer. Still awaiting the second pathology report confirming invasiveness but hoping the MRI is even more accurate. I still don’t have a treatment plan as yet since I’ve decided to do a full mastectomy versus a lumpectomy with radiation so I met with a wonderful plastic surgeon this week also who will be working in tandem with my breast cancer surgeon and feel really good about their plan. My treatment plan will be determined once the surgery is over with and I meet with an oncologist and have received my oncotype score. Surgery and even scarring has come along way from what I’m understanding and I’m glad you’re finding this with chemo as well. Happy to hear you’re finding strength from your family and friends too. We have to find the positivity in the little things and in knowing we are never alone in our journeys. Maybe I’ll see you at Wellspring. I’m starting a program called the healing journey on February 8 and joined the breast cancer support group that also starts that same day. Take good care and keep up with your positive thoughts.

Skye2
222 Posts

@Coco7 @SusanC

Susan, I believe you’re getting your chemo as neo adjuvant - if your tumour is on the larger size, they like to shrink it with chemo before surgery. In my case, my tumours were small (1 cm), so I had surgery 1st, then chemo.

Coco, the Adriamycin (chemo) can be cardiotoxic, so they do a baseline (transthoracic) echocardiogram- I had it as well.

My experience with AC-T chemo (Adriamycin, cyclophosphamide and taxol), was 4 cycles of AC, then weekly taxol for 3 months. The AC is “dose dense”, and can be quite overwhelming in side effects. My initial opinion would be “no”, don’t work If you don’t have to. Managing side effects can be a full time job- the fatigue will set in, you will feel like you just don’t have enough energy…you will have bone pain from Lapelga injections (to stimulate your white blood cells the day after chemo), bloating, constipation, headache, nausea, insomnia, feeling weepy and overwhelmed and brain fog - yes!

it’s very important to hydrate before and after chemo- water!!!! Is your best friend❤️, walking, or a little exercise as well as rest are important, and a comfortable stress free environment are paramount to your well being.
You will be on a physical and emotional roller coaster, and side effects are cumulative…. I believe this is a time to focus on “you”, and you need to be gentle with yourself.

My experience, is my hair started falling out the day after my 2nd chemo, and it will come out in clumps! I cut my hair to a “boy cut” the day before to lessen the mess and the trauma…. Your scalp is sore and tingles as the hair comes out and lasts for about a week. I did not lose my eyelashes or eyebrows, but they did thin. I did however, lose my nose hairs, facial hair (ie/ no lip waxing!), as well as the hair on my legs.

I did not have any energy to cook, and couldn’t put a meal together if I wanted to, and I like to cook!!! My friends were amazing in preparing meals, and some days it was all I could do to heat something up. It’s important to eat as well as you can…”eat the rainbow!” I always wanted soup on chemo day, and comfort foods…

For chemo- I always brought my iPad/ book, mints or werthers as I swear I could taste my chemo🤷‍♀️. Earbuds to listen to music, and wear something comfortable as well as something the nurses can have access to your forearm to start an IV.

When the nurses did their admission assessment, they offered counselling , and I always refused it. In hindsight, I wish I had taken it. I hadn’t found this community yet, and only knew 1 person who had had breast cancer. She was my lifeline, especially after my mastectomy and lymph node dissection. I had such bad nerve pain, and used to cry on the phone😢!

Anyway…there is sooo much to this journey, and all it’s various parts. The most important thing is to ”stay” in the moment; deal with today. My brother, who was just finishing chemo used to say: baby steps!

Sorry this is so long, I could go on forever!🤦‍♀️. I can’t remember who was asking about reconstruction - I can speak to that as well, as I have tissue expanders in, and will switch them out this coming summer for implants (they have to wait 6 months after radiation is finished). I have 2 radiation treatments left!!!!!

Anyway, I’m happy to expand on anything!

Sue

SusanC
21 Posts

@Skye2 thank you for all the info. It helps immensely to know what will happen and when. The why is the hardest part of this existential journey. I am writing all this down! Armed with knowledge and yes, not thinking too far ahead, will be a superpower I'm sure. And the comfort foods and advice on work are excellent. I've also been told to keep a hydrating booster drink on tap, fudgesicles and ice chips for sore mouth. What fun. Not.

Skye2
222 Posts

@SusanC

…I did my chemo from June 1st to October 12th, and craved popsicles!!! I ate them by the box!🤦‍♀️
mouth sores are another side effect they prepare you for - I only got a couple, and they’ll give you sulcrafate to rinse with. I also made the “chemo” rinse of baking soda and salt (1tsp of each), in 1 litre of water). I rinsed with it a couple of times/day.

AND! I started a journal to keep track of everything from important phone numbers, side effects, issues etc…. I had over 100 tests and appointments between diagnosis and the end of chemo.

Im 60 years old, and had terrible hot flashes after menopause, went on HRT for 7 years, and of course was told to stop it the day I was diagnosed. The hot flashes came back with a vengeance, and I found they got worse while on chemo (could be all in my head, but…?!?🤷‍♀️).

Personally, I tried not to schedule anything for a couple of days on either side of “chemo day”, as before I liked to hydrate and get meals, housework organized, and after, I was too wiped out, and also trying to drink lots to flush out the chemo, therefore needing to pee frequently!

Oh yes! Here’s a tip: put clean sheets on your bed before going to chemo, so you can come home and climb into a nice fresh bed😴!

Dont be surprised at your emotions, I would become weepy and blue all of a sudden…. It’s understandable, and chemo is a long haul…

❤️

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