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Triple Negative -new

Triple Negative -new

Posted by SueZQ on Oct 22, 2020 8:20 pm

Hi everyone, 
So I had an appointment with the surgeon today, following a diagnosis of invasive ductal carcinoma. He said mine is triple negative.
I am being referred to an oncologist, as the surgeon believes chemo will be done first. 
Would anyone like to share their experiences? I want to be as prepared as I can be.

Thanks.
 

Re: Triple Negative -new

Posted by cancertakesflight on Oct 22, 2020 8:25 pm

SueZQ‍ Thank you reaching out. I'm sorry to hear about your diagnosis.  While I personally have not had triple negative breast cancer ashcon‍ may be able to provide some background that would help you to ask the right questions.  It's great that you are doing some research a head of time. We are here to help.

cancertakesflight 
Laughter is a lifestyle choice. www.laughterandcancer.com/blog

Re: Triple Negative -new

Posted by ashcon on Oct 22, 2020 10:32 pm

SueZQ

I was diagnosed with TNBC in July 2017. Unlike you, though, it was not known to be TNBC till after the surgery was done to remove the 2.5cm IDC lump, along with a small DCIS tumour and 4 positive lymph nodes.
I think if it was known to be TNBC beforehand,  I likely would have had chemo first. 
With that said, then, I believe you are fortunate to be headed to chemo first.
There are not as many systemic therapies available for TNBC as there are for other types of breast cancer, but TNBC does respond well to chemo.
I have to thank chemo (and 2 surgeries, and radiation, and healthy living and eating well!) for getting me from a stage 3 diagnosis to No Evidence of Disease in my 9 month of treatment. 

Do you know how big your tumour is? They may want to "mark it' before chemo so that they can monitor how it responds to chemo, and also use that marker to locate the tumor for the eventual surgery. 
You will likely be prescribed a dose dense regime of chemo (every 2 weeks vs every 3 weeks), along with a medication to boost your white blood cell count between treatments because chemo does do a number on many of your blood level indicators. 

I see you have been exploring the discussions in Eating Well When You Have Cancer, which is great. A healthy diet and regular exercise is another tool in the toolbelt to fight TNBC. 

There are many other TNBC members here on this site who will jump in here I'm sure. There are also many discussion threads too like this one:
https://cancerconnection.ca/discussions/viewtopic/39/63504?post_id=303279#p303279

​​
I found it helpful to NOT do a lot of internet scouring for information on TNBC as you will likely find some doom and gloom messaging. 
Stay close to credible sources of information. 
Let your doctors know what level of information and detail you want, and how you want to be told information. I told my doctors not to sugar coat anything, and to tell me as much as they could otherwise I would go look stuff up on the internet - and they didn't want me doing that! 
I'm a former project manager, so I decided to treat this cancer like a "project", logging all my conversations, my questions, my test results, etc. In a way, this helped me to feel I had some semblance of control in an incredibly uncontrollable time. 

There are a lot of things you can do to prepare for chemo, like meal preparation, and planning for how to manage your hair loss, which (sadly) will happen with chemo. 
I found using the search window up top very handy to find discussions on particular topics and even to find other members with my diagnosis. 

Who have you told? How have the responses been? 

If I can answer any other questions for you, don't hesitate to reach out. 
 
---- "Nothing ever becomes real till it is experienced." ----

Re: Triple Negative -new

Posted by Moon on Oct 23, 2020 9:28 am

I was diagnosed with Triple negative breast cancer in Feb 2020! I had 6 rounds of chemo which did not work for me it actually increased my tumour slightly!
in August I had a single mastectomy! Tumour was 2.2 cms and also had 2/7 nodes removed! I am now doing #18 of 25 radiation and because the chemo didn’t work my oncologist will decide if I should try a different chemo or immunotherapy next!
very difficult road for sure but I have a wonderful Family who is there every step of the way! This is my first time posting but I visit this site daily!

Re: Triple Negative -new

Posted by JustJan on Oct 23, 2020 9:52 am

SueZQ‍, 

Welcome to the group, even though like the rest of us, it’s a place you never expected to find yourself. 

I was diagnosed with Triple negative IDC breast cancer in January 2019. My tumour was 1.5 cm in size. I had a lumpectomy and sentinel node biopsy first which was followed by a consultation with the medical oncologist to discuss chemo. My cancer was stage 1 and I was offered two options for chemo. One was the same as ashcon had and the other was an every three week regime. So depending on your specific circumstances there may be options. 

The decision on whether to do chemo prior to surgery may be based on the size of the tumour.

I agree with ashcon to try to stay away from googling as it can really play into your anxiety. There are some good trusted sites like the Canadian Cancer Society and I also relied on information from the Mayo Clinic. 

A strong support system is extremely helpful when trying to navigate all that comes with a cancer diagnosis. Also be prepared for many twists and turns as you navigate this. The one thing I have learned is that although there are similarities with treatment, each person is unique in how they respond and the side effects they experience. 

Let me know if you have any specific questions and I will do my best to answer them. 

 
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers

Re: Triple Negative -new

Posted by SueZQ on Oct 23, 2020 10:50 am

Thanks everyone for your responses! I wish you all success with your treatments, and the best outcomes!

ashcon‍ thanks for the info. The mass is about 35x26x25mm, and the lymph node 14mmx4mm. Both are positive, so I will be booked for CT and bone scan to look for spread.
I am keeping my immediate family and closest friends up to date, so I have a pretty amazing support system. Unfortunately many of them are geographically far from me. I want to see them, but with Covid and the uncertainty of my next steps, I don't know if I should risk it. 💔 Oh, to be able to hug my best friend! My son is 13, and he was satisfied with "it's very treatable". I dread having to tell him anything different, but until I do, he's dealing with it well.
I have booked my niece for tomorrow to cut my hair. I think I have enough to donate, so I may as well get something good out of the situation.
Trying not to think too far ahead, but I'm a planner. I find it easier to handle bad news if I've already considered the options. So ya,  google...
I have a long history of depression, which I had recently been managing with a supplement protocol. I'm feeling like this may not be enough to get me through this. I think they have a mental health component at SRCC, so I expect to get some help there.

Trying to stay positive! Will keep you all updated.
Thanks for all your support!

Re: Triple Negative -new

Posted by 023tes on Oct 23, 2020 11:34 am

Hello. I was diagnosed in May with triple negative breast cancer and six months of chemo to start. The lump is shrinking ! Next is surgery! I am wishing well and sending positive vibes!!

Re: Triple Negative -new

Posted by SueZQ on Oct 23, 2020 5:54 pm

023tes‍ I'm glad to hear your treatment is working! Hope all goes well for your surgery!

Re: Triple Negative -new

Posted by Lianne_Moderato on Oct 23, 2020 5:54 pm

Nice to hear from you 023tes‍ , Great news about the shrinking tumour!  Do you have a surgery date yet?

As you can see from the posts above, you are in great company with other TNBC members like JustJan‍ , ashcon‍, Moon‍   and SueZQ‍ . There are many others as well.


Lianne

Re: Triple Negative -new

Posted by SueZQ on Oct 23, 2020 6:00 pm

JustJan‍ thank you! I haven't been staged yet. Luckily things are moving quickly, and I've got CT and radiology oncologist on the 27th, and bone scan the 3rd of Nov. No word on med oncologist appointment yet. I'm asking as many questions as I can think of!
I don't think they'll let my hubby come in the hospital, but I have some lorazepam! Stupid Covid.
Hopefully have a clear plan soon. A lesson in patience....

Re: Triple Negative -new

Posted by Essjay on Oct 24, 2020 9:11 am

Hi Moon‍ thanks for posting - welcome to the TNBC club! 
I’m sorry to hear that the chemo didn’t work...
Those radiation sessions will soon fly - how is your skin doing?
Ive heard good things about the follow-up chemo for those whose tumour doesn’t respond to chemo - it sounds like you are getting good care, and it’s great to hear you have a supportive family.

Good to hear from you, Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: Triple Negative -new

Posted by Moon on Oct 24, 2020 9:21 am

Hi Essjay‍ 
Thank you! I am doing really well with radiation so far no burns and only slightly red! I use Gaxal base cream and find it to be awesome! I was very disappointed that the chemo treatments didn’t work but I understand that sometimes happen! Hopefully the follow up treatments will do it’s job. It will be either Capecitibine or pembro I will know in the next couple of weeks!
Glad you are NED!
 

Re: Triple Negative -new

Posted by IlaE on Oct 24, 2020 10:56 am

Hi SueZQ
As with all the others who have responded to your post - welcome to an amazing group of support.

I was diagnosed with TNBC in September, shortly after my 53rd birthday and started chemo last week, on October 15. My initial reaction was surgery first to get this effing thing out of me, and, similar to you, I'm a planner - I need to see the pieces and how they fit together in order to make decisions. My surgeon wasn't going to refer me to oncology until after the surgery but I asked for it and she agreed. I'm so thankful that I was able to meet with the oncologist quickly and that conversation changed everything for me. Suddenly dots that were not connecting, did. I understood the bigger picture vs just what was right in front of me.

We have an only child, he's 15. We keep him included in all updates on test results, treatment plan and when important dates are, such as the first day of chemo. He's super sweet and texts me often to check in on me. I run my own business and I run the household, so how these boys of mine (husband and kid) were going to manage when I wasn't feeling well kept my brain spinning. We stocked the fridge a few days before chemo.  We also had friends bring over a bunch of food on Day 4 - and while that was so lovely, it was also too much on top of what we already had. I scrubbed my house the day before chemo. The week before, I switched out my closet to winter clothes, I got on top of my inbox and communicated to clients and transitioned some work away to another provider.

The few days before chemo, I didn't sleep and wasn't eating much. I was so worried about what it was going to be like and what to expect. I did take sleeping pills for a couple of nights as I knew I needed to rest. My husband came with me to my appt. Protocol at the r Cancer Center is stellar - sanitizer at the door, then a manned station for Covid screening questions and new masks. I made my husband touch things if needed, eg door handles. He stayed with me for my treatment, which was good and hard - it's hard to watch him, watch me with all the uncertainty we both had on what would happen next and how my body would respond. 

I packed way too much for treatment. I didn't touch my snacks, I didn't read, colour or journal. All those "what to take to chemo" lists in Pinterest may be great for others, but was overkill for me.  The treatment I'm on is FEC-D.  The first three rounds of chemo are FEC and the last three rounds are the D.  FEC is made up of three different drugs - two of which are pushed manually by the nurse thru IV.  Michaela sat with me for the better part of the first hour, administering these two and also walking me through what was happening, what was normal for side effects and what to watch for. Some people have reactions to these two - which is why the nurse sits with you and administers. I had no reactions - no problems with anything at all. The last part was about 45 minutes and that's when I reclined my chair, covered up with a blanket and put my earbuds in. For me there was an acceptance at that point. Acceptance doesn't mean that I like it, agree with it, want it, etc., but that I wasn't putting energy to fighting it. 

After treatment was done, we walked out, I felt absolutely fine physically (mentally and emotional roller coasters continue daily).  With this protocol, you need to get up in the night to pee as this protocol is tough on your bladder. I set my alarm and got up twice. I didn't start to feel icky until Day 3 through Day 5. I slept a lot - 10 hours at night and two naps during the day.  There was a low level of nausea continuously until about Day 6 - the meds did a good job of keeping it at bay and I only needed the "as needed" anti-nausea pills twice. Drink drink drink drink. I have a soda stream and drink at least 6 glasses of that a day, on top of peppermint tea. Hydration is soooo important and I feel it's why I don't have any mouth sores? I'm holding on to that story :)  The other important thing is to move every day. On my worst feeling day, I did laps around my living room and kitchen. Every other day I've been out walking, even if it was once around the block.  I'm up to shovelling snow and a two block with an uphill these days.  

Everything tastes off. Even now. I made stew last night (it's snowing in Calgary and what else do you do on a cold Friday, snowy night but cook up some stew??) and I had to get my boys to taste it. I had a salad the other day and it tasted a bit weird - checked the date on the bag and ya, it expired three weeks ago. Ooops. 

Give yourself permission to just be. My life is typically fast and faster ... slowing down and putting my self care as #1 on this list is hard and it's what's required right now.  I'm on Day 10 - and I feel 90%.  Other than the off taste, I feel good and am living my regular life with a few tweaks. Rest when you need to. Ask for help. I went to Superstore for groceries yesterday, an activity I love - meal planning, the order and ritual for me of cooking for and feeding my family.  Husband wanted to come .... I was a bit pissed because that's my space and I honestly haven't had any time away from him for over a week 😂.  But he came. And when we were done and the buggy was full and heavy, the parking lot was covered in snow I was suddenly thankful he was there. Pushing the heavy cart through the snow and lifting the bags into our truck would have taxed me. 

This is a temporary period of time. We won't be like this forever. I'm saying this as much for me ... one day at a time. Sometimes one moment at a time. Listen to your body, trust your gut, let your village of friends and family support you and don't forget you have an amazing village online here of people who are going through or have gone through a very similar journey.  

Wow - just saw how long this post is .... I hope some of it is helpful and please know you can reach out anytime, I'm here for you, as are all these amazing people. 

xoxo

Ila 

Re: Triple Negative -new

Posted by SueZQ on Oct 24, 2020 11:38 am

IlaE‍ Thanks for sharing your story so far. This is great for me to have an idea what the next month or so will bring. Please keep me updated as you travel along this journey.
I will post an update after my appointments on Tuesday. I'm really anxious to get a clear plan so I know how to prepare. 
I'm so glad to have found this group! 

 

Re: Triple Negative -new

Posted by CSarai on Oct 24, 2020 11:55 am

Hi!
There are some great stories here with a lot of awesome support.
I was diagnosed with triple negative in March 2020 at 37 years old. My lump was 4.5 cm and I had one lymph node involved. I was stage 2b. I had chemo first Taxol then AC. The Taxol was a breeze and the AC was much tougher. Very sick. In bed a lot. They had to adjust my dosage because I was simply too wiped out and my body couldn't recover fast enough for the 2 week cycles. My tumor shrunk significantly on chemo. By the time I had my surgery at the end of Aug, it only measured 9mm. They removed and tested 15 lymph nodes and found cancer in only one. That made me feel great, but it wasn't good enough for me. I've got 2 kids to be here for (ages 4 and 6). So I'm about halfway through 25 rounds of radiation and I've just completed my first cycle of Capesidabine. It's been tougher on me than I thought, but I'm a fighter and I'll do whatever I can to be here for my kids. Capesidabine will last 6 months and then I'm doing a drug trial for a year. I had a CT scan the other week that showed something under my sternum...a 1 cm soft tissue. Just about lost it completely! Then had a follow up PET scan showing nothing. It was likely a thymic rebound. So life is good again and I'm back to fighting the fight. I eat well and exercise regularly. Everyday I thank God for another one and try to remain positive. It's a long hard struggle but I can beat this. And you can too! There are a lot of us out there fighting this and we have a tough road. But you've got this. Just keep going one day at a time. The bad days will come....and linger. But so will the good days. I'm not going down without fighting with everything I've got and neither should you!
 

Re: Triple Negative -new

Posted by 023tes on Oct 25, 2020 10:39 pm

Hello. 

So  many strong ladies.  No surgery booked yet. I am really nervous about all that. I  know the dr wants to save the breast.  I  wish they would just take them both off. I  realize that may be extreme but chemo is so very hard on me and I just feel like I would be doing what I could to prevent it from returning also I fear that living with two uneven breast would be hard.( for me)  I know nothing about Quebec laws and if the ultimate decision is up to the surgeon.   It does seem the bigger the breast the harder the procedure .( I am a d) hoping to meet the surgeon soon.  

Re: Triple Negative -new

Posted by Cherry on Oct 25, 2020 11:03 pm

Hi @SueZQ‍ 
I was diagnosed with TNMBC (invasive lobular) on 30thJan2020. Now Completed 8weeks of chemotherapy,  a mastectomy followed by radiation.(26sessions) all back to back. My surgeon wanted to operate first but I insisted on seeing an oncologist and doing an MRI for which I had to go to Buffalo as there was no availability of appointment  before three weeks in the GTA. The MRI report changed the plan and I was given chemo first. Due to Covid I went through all appointments alone. No one was allowed to accompany me. Chemo is harsh, takes away a lot from u but eventually you get ok. Yes I was allergic to the red devil administered by the nurse so before every session I was doped with Benadryl injections. I visited the emergency twice.
Got fever , breathing problems, too much weakness. Last two chemos got delayed by a week each due to my weakness. Just remember that you will get over it but for the time being just take it easy. Keep yourself away from stressful work routine. I experienced bad mood swings but that is bcz of the steroids given.Its ok to have sleeping pills as good nights sleep is essential for the body to heal. I had them for nearly 6 months.
Radiation days were not bad but the so called  ‘sun burns’ for me, became terrifying  a week later. Could nt wear anything ,but again it all settled down in the coming weeks. Now my skin is healing , feeling much better. Next month is my scan to chk how effective radiation has been. Ya chemo was not effective on the breast tumor which was surgically removed later.
Good luck to you with your treatment.
cherry
 
 

Re: Triple Negative -new

Posted by SueZQ on Oct 26, 2020 4:23 pm

Cherry‍ thank you for sharing! I'm sorry you had to deal with an allergic reaction on top of everything else! I wish you all the best with your scan next month! Please let me know how it goes.

Sue

Re: Triple Negative -new

Posted by Lacey_Moderator on Oct 27, 2020 10:08 am

Such a great thread! I hope you all stay connected 😊

Re: Triple Negative -new

Posted by Cherry on Oct 27, 2020 11:05 am

Loads of good luck to all and a happy Halloween weekend.😊
cherry

Re: Triple Negative -new

Posted by ashcon on Oct 27, 2020 11:12 am

023tes‍ 
I, too, hope that you get to meet the surgeon soon.  I know what you mean about the desire to do whatever it takes to reduce the risk of the cancer recurring or spreading. I see you posted here in this Triple Negative discussion thread, so I am assuming you were diagnosed with TNBC? 
If that is the case, please know that having a mastectomy does not necessarily exempt you from requiring chemo. TNBC is aggressive, and is usually invasive to some extent by the time it is discovered, so chemo may be in the cards regardless.

There is a good discussion here on Lumpectomy vs Mastectomy
Also, if you decide to go for a single mastectomy, you are right about possible concerns with being "lopsided", and the requirement to wear a prosthetic, especially if your other breast is a "D".    Of course you may opt for reconstruction, which typically involves increased recovery time. 

All provinces are the same in wanting to reduce or cut costs, which is fair. But whatever surgery option you decide is right for you, it is your decision, not the doctors.  You may have to self-advocate, though, if pressing for a mastectomy, especially a double mastectomy.
I am here in Ontario. My surgeon explained that some doctors refuse to remove a "perfectly good breast" because their provincial health agency won't cover their cost for doing the surgery if the stats say that the risk of recurrence or new occurrence in the "healthy breast" is below a certain level (say, 25% for example). 

I had to switch surgeons and present a case for why a double mastectomy was the right decision.  I said that I was late in getting my diagnosis (TNBC, stage 3) because my dense breast tissue missed seeing the tumour on my regular screening mammogram. Dense breast tissue also presents an increased risk of developing contralateral cancer (new cancer appearing in the other breast). I did not want to go through that again.  I said that not removing both breasts meant annual MRIs and accelerated screening, which is very costly. Plus, I needed to reclaim my life, and my career and could not be a full-time patient. That emotional and financial stress, alone, was not healthy for my well-being.

In the end, I did receive a double mastectomy (no reconstruction). Nothing is guaranteed that this cancer won't show up again, but I have greatly reduced the risks, and I have more peace of mind as a result.

When are you seeing your surgeon?
---- "Nothing ever becomes real till it is experienced." ----

Re: Triple Negative -new

Posted by 023tes on Oct 27, 2020 9:07 pm

Omg thank you so much for the info! Yes I have stage 2 triple negative breast cancer.  I  had an idea I was probably walking into a situation wanting to remove a healthy breast.  My chemo will be done nov 5.  It was way to hard to think of ever doing it  again!  I  guess I will see about the stats.  No scheduled surgeon appointment yet.  I will read the link ! Thank you again 🙂
My anxiety is so high!

Re: Triple Negative -new

Posted by SueZQ on Oct 28, 2020 7:59 pm

Hi all,
Had my CT scan yesterday, and it shows only the breast and lymph node! Not staged yet, pending bone scan on Tuesday. 
So as it stands, my first chemo treatment is Thurs Nov 5. Exactly 3 weeks after biopsy results. Wow.
AC-PACL(DD) is the treatment.
Oh, and the lovely COVID test booked for Sunday😔.
Happy to have a plan so we can get started kicking this cancer's butt!

Sue
 

Re: Triple Negative -new

Posted by Lianne_Moderato on Nov 3, 2020 7:19 pm

SueZQ‍ 

I hope your bone scan went okay for you today. How are you feeling about chemo starting?

Oh and I have had a couple COVID tests - not fun  eh ha

Lianne

Re: Triple Negative -new

Posted by SueZQ on Nov 3, 2020 7:26 pm

Bone scan done, echo done!

I'm a little freaked out about chemo. And putting the PICC line in tomorrow 🥺. Does it really take an hour? I don't trust that freezing is enough, after my horrible biopsy experience...

The covid test wasn't that bad.