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Let's Discuss...talking about cancer

Re: Let's Discuss...talking about cancer

Posted by Tiah041369 on Oct 9, 2020 11:13 am

Hi, I'm newly diagnosed with breast cancer in my left breast that has spread to lymph nodes, and my surgeon told me I had a spot on my back. I don't even know the type of breast cancer I have yet, or where the spot on my back is. I know he meant on bone though. The surgeon at the breast clinic told me this on Friday, last week and that the spot on my back needed to be dealt with before the breast cancer. He told me that we would see in the next 2-3 months if radiation works. This week went by with no call about starting radiation. I tried calling my family doctor multiple times this past week to only have his secretary tell me he would call me back, but he didn't. I was hoping he could call me back so that I could tell him about a tightening pain under my left ribs which has been moving from the front to the side and back, along with sharp pains on occasion. This started not long after I got the bad news so my family keeps telling me it's stress. Since this is a long weekend and I couldn't get my family doctor to call me, I decided to go to the clinic to find out what to do about this pain since Tylenol wasn't helping. Well, now that worried me more. The doctor there found a sore spot on my lower left rib in back and then just prescribed me Naproxen for the pain saying it's an inflammatory and also a different anxiety pill that I can take during the day. Then the pharmacist worried me as well. He called the doctor who prescribed me this and I overheard her say something about my liver. So now I'm thinking, did the cancer spread to my lower rib and/or liver now. The not knowing and waiting is frustrating. My family isn't helpful since they think what I have can be completely cured and they don't want to hear what I have to say. They keep telling me to stay positive, but I can't since I haven't read or heard of anyone advanced like me being cured. Sorry for my rant, I guess I'm really frustrated and just thinking this cancer will spread to other places before any treatment could start.

Re: Let's Discuss...talking about cancer

Posted by ashcon on Oct 9, 2020 1:12 pm

Welcome - I'm glad you found this community, though I'm sure you wish you weren't here. 
You've been given a lot of not-so-good news that hasn't been supplemented with a clear and implemented action plan yet. Boy, I wish more doctors were aware of the impact of this waiting in a dark and silent cave had on us, especially just before the long weekend. 

I am not a doctor, nor do I know what has been said or done, or not said or not done, by whom. But at first read of your story, it sounds like it was probably the surgeon who needs to be followed up with about the referral for radiation to start. 
(As soon as I entered the care of my region's cancer centre, my family doctor was completely hands off, leaving all tests, treatments and referrals to the oncology team). 
Can you go back to that surgeon, if you haven't done so already? 
I'm assuming that you know it is in your bones because of scans or tests, yes? 

Also it is possible that the reference to your liver is only about the effect the Naproxen will have on your liver. Pain meds tend to affect the liver. So if they are thinking that you are going to start treatment(s) for cancer - which is also very hard on the liver - they're probably just worried about keeping the dosage of painkillers down so that you will be OK to start your cancer treatments (when they start). 

Hope that makes sense. 
Hope you are able to get hold of someone today. 
Hope that you have hope. 
Hope that you know you are not alone - we're here for you. 
---- "Nothing ever becomes real till it is experienced." ----

Re: Let's Discuss...talking about cancer

Posted by SpeedyStill on Oct 9, 2020 2:36 pm

You have been given great information from Ashcon.
From what I read you need some answer from your Cancer Center.
There is always going to be tests and waiting periods but if we know what we are dealing with it is a lot easier to accept.
You are at the right place for some empathy and compassion.
Don't tell me you understand until you have walked in my shoes.
Love that saying.
Trapped feelings can be dangerous to our health.
When I share my feeling with a caring person or Community I always feel a little better.
love in your heart is love to share

Re: Let's Discuss...talking about cancer

Posted by Tiah041369 on Oct 9, 2020 8:33 pm

Hi, thank you for the advice. The tests I've had so far is a mammogram, ultrasound, biopsies, CT Scan of chest and abdomen and a bone scan. The surgeon at the breast clinic gave me the news, and he's going to send it to Moncton. That's the closest place to where I live that does radiation. So, I'm waiting to get a call from Moncton. I probably won't see the surgeon at the breast clinic until the radiation for the spot on my back is done, since he told me that if radiation worked, dealing with the breast cancer would be next in 2-3 months. As for my family doctor, I was hoping he could prescribe me something better to control the pain under my left rib, and back until I can go to Moncton. Since he would not return my call this week, I went to the clinic instead. I'm just frustrated from the waiting for some sort of treatment to start. I felt no pain a few weeks ago when I passed all those tests, but I'm now feeling pain. I'm praying that this cancer isn't spreading like wild fire before I can start treatments. Thanks again for your words. It feels good to know that there is others out there that understand. My family doesn't want to hear what I have to say, they totally believe that I'll be completely cured.

Re: Let's Discuss...talking about cancer

Posted by SpeedyStill on Oct 10, 2020 6:27 pm

Cancer is Cancer no matter what type or stage.
True understanding only comes from the experience.
Those who have not suffered do not understand suffering.
Prostate Cancer has always been plagued by this misunderstanding.
Cancer after you are told, every pain becomes suspicious.
I know because that's me.
All the Best 

Re: Let's Discuss...talking about cancer

Posted by gwenny on Oct 11, 2020 10:15 am

My problem was that I didn't want to talk about it myself. Talking about it with my doctor was like a challenge for me every time, and a thousand times worse to talk about it with relatives or friends. Reading other people's stories helps to understand that your case is not unique, even though it's easy to understand it from the start.

Re: Let's Discuss...talking about cancer

Posted by Elsie13 on Oct 11, 2020 10:00 pm

3northernbears‍ , I was just looking at your ABOUT ME page.  So sorry to hear what your husband is going through, and what the two of you are going through. And I suppose fewer people are talking to you because they don't know what to say.  Maybe you would find the caregiver discussions helpful?   https://cancerconnection.ca/discussions/viewcategory/35
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Let's Discuss...talking about cancer

Posted by Western on Oct 20, 2020 6:48 pm

I have four friends with cancer and with them are my most open / honest discussions. No happy crappy talk - no sloganing - etc.

I’m convinced only those who have it get it.

Re: Let's Discuss...talking about cancer

Posted by Orlando on Oct 23, 2020 10:18 am

1) Who do I confide in about my role as a Caregiver?

When my wife was first diagnosed with Glioblastoma Brain Cancer I confided in a few people.  Our support group was quite extensive and as time went on the circle of support became smaller.  It became smaller because a lot of people stopped coming around or stopped calling and it became smaller because I chose not to share with everyone.  I was very upset at first when people whom I believed to be close friends stopped calling and seemed to stop caring.  I am no longer upset with these people but I do know who I can count on.  Currently, I am involved with The Hearth Center (Cancer Support), this group and I have several friends and family members with whom I can confide in.

2) Do you prefer talking in person, over the phone, by text or email?

I love face to face interactions.  I can't stand texting or communicating via e-mail.  However, I do enjoy talking on the telephone.  Covid-19 has severely impacted my ability to get out and take a break from being cooped up in my house.  Like many other people, I've been working from home since the start of Covid-19.

3) What is the most helpful when I confide in someone?

I have a few friends who offer me different things.  I have friends who have been on a similar cancer journey so they are able to relate to my current experience.  I have friends who have never experienced a cancer journey but they are still able to offer good advice and support.  Generally, I feel that it is helpful for my circle of support to listen and be as supportive and understanding as they can.  

Re: Let's Discuss...talking about cancer

Posted by Dauntless on Oct 24, 2020 11:26 am

I am so grateful to have found this site. I have terminal lung cancer, and am very open about discussing it, but, find a lot of people cringe and look away, or become overly optimistic. Optimism is good, but so is honesty and I like to be upfront about it all.
Just had Afitinib stop working for me, and am having some difficulty with that as I wait to restart chemo on Mom 26th Oct. Also being tested to see if I have the gene mutation for another Targeted drug Tagrisso.
It will be three years in Nov since diagnosed and living with this illness. 
I will continue to be open about it all, but, have a feeling some friends will slip away.
My two sons refuse to accept that I am terminal, they are very scared, one is 36, and one is 47, but, we are very close. I have one grandson only and always being on go, I had so many plans for him and me, but, the SOB and other awful side effects has made that impossible. I think that hurts the most.
I do spend as much time as I can with him, but, its not the same as if I was healthy.
I looked for support groups in my town, StJohns Nl, but couldn't find any, so, if anyone on here is from my city, would love to chat with people in the same or close situation as me.
Will continue to look for inspiration on this site, and so grateful it is here.

Re: Let's Discuss...talking about cancer

Posted by Cynthia Mac on Oct 25, 2020 10:36 am

Hello, Dauntless‍ , I saw your post in which you mentioned Afitinib. Another member on the site has some experience with it - WestCoastSailor‍ . I’m tagging him in case he can help you.

You’ve been on the site for a while — have you been involved in the discussions in the Lung Cancer under Specific Cancers?

I’m about 60, and I was scared, too, when my Dad’s cancer was diagnosed and when it metastasized, so I can appreciate how your sons are dealing with your diagnosis. Cherish whatever time you are able to spend with your grandson.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Let's Discuss...talking about cancer

Posted by Sher49 on Oct 25, 2020 10:44 am

Dauntless‍  my name is Sher49‍  and I too have terminal lung cancer. I am 3 years into my journey and am hoping I can live with my tumour if they cannot remove it. My most recent scan in September showed no growth or metastases,  so I now wait until Feb. for another CT scan as long as things continue going ok and I am praying they do. I am unsure what is next when it decides to rear its ugly head again. I am in NS, so not NFLD but still a fellow maritimer. I would love to chat when we both feel like it. Please feel free to reach out. God bless you in your journey. Sher49

Re: Let's Discuss...talking about cancer

Posted by Dauntless on Oct 25, 2020 12:03 pm

Thank you for the responses, I have been on this site awhile but first time I have replied.
The Afitinib has stopped working, so I am going on chemo, but I would chat with Sailor or anyone on this journey I'm on. 
I am interested in what treatments those with Stage 4 NSCLC are or have taken. 
I'm not overly familiar with how to chat with a specific person.
I will search the community and see how that is done.
Chemo tomorrow, steroids today. I have had chemo before, immunotherapy, TKI, but for some reason very concerned that this is the final treatment.
Being tested for T790M mutation, wish me luck I am positive so I can at least have a run with Tagrisso, but, its chemo till then.
Keep the info and support coming, Hello again fro StJohns, Nfld.

Re: Let's Discuss...talking about cancer

Posted by Butterflies on Oct 25, 2020 5:20 pm

Hi Dauntless,

I was diagnosed with adenocarcinoma of the lung involving the brain, lung, adrenals, bone and liver back in November 2019.
I'm on a clinical trial and taking a TKI drug called EGF816 (Nazartinib).

This clinical study also involves the addition of the second agent called INC80 (Capmatinib) after 5 months of therapy in an attempt to prevent acquired resistance and delay progression. The study was to require core biopsies, both at baseline and at 5 months. However, I never received a tissue biopsy they only tested using blood plasma which revealed I did not have the T790 Mutation and will not receive Tagrisso. I am very upset about this and will find out this week why  I was unable to have tissue from my liver or lung tested. 

I was told that if my cancer progresses, the only treatment option would be chemo. I also just had a bit of a set-back as my last MRI a month ago showed new unmeasurable brain lesions. I just finished 10 rounds of full brain radiation.

So scared but trying to make peace with it. Fingers crossed that you and WestCoastSailor have the mutation. 

Feel free to reach out. 


Re: Let's Discuss...talking about cancer

Posted by Dauntless on Oct 26, 2020 6:49 pm

That is a tough one. I also asked for another tissue biopsy of large mass in my left lung, but would only do blood biopsy for the mutation.
I started chemo this morning while waiting for results of the biopsy as my symptoms were getting worse and couldn't wait for results re starting Tagrisso.
I had to ask for this test, my oncologist did not mention it. Just mentioned chemo.
Just praying that it doesn't mets from lungs, as for three years it has been lungs only.
Its a tough journey we are on, and no one understands it if they are not walking it. You must research, advocate for yourself, 
Take care, hope they will do the tissue biopsy as it is more accurate

Re: Let's Discuss...talking about cancer

Posted by Lianne_Moderato on Oct 26, 2020 7:00 pm


Thank you for sharing . I am sorry to hear that the Afitinib has stopped working. I hope you are able to move on to Tagrisso.

As an aside, to "tag" someone on the site to reply to them directly, you can type the "@" sign and then start typing their username. A list that matches what you have typed in will appear. Select the correct one and it will turn blue as your name shows above.

Keep us posted.