Needing Support and maybe more than a little hand holding.

Noly · January 2018

I was diagnosed in 2010. I accidentally fell pregnant just after my last radiation treatment (I lost that pregnancy at 9 weeks). I saw the Oncologists shortly after and when I expressed a desire to hold off on starting Tamoxifen to have a family the Oncologists looked at me like I was crazy, discharged me from their care and wished me luck. I did ask at the time if I could start tamoxifen after we had a baby and was told no. Not sure why they decided that was not an option but am interested to know that others have had a different experience.

I fell pregnant 5 times naturally (lost all these pregnancies) and underwent 3 IVF transfers. I have twin girls as a result.

All this has been since my last radiation treatment about 6 years ago. I have only had breast MRI's as follow up with my GP. I was told the whole way along that my cancer was caught early and that basically I had nothing to worry about. Everything has been clear so far, but I've had a persistent cough since November and discomfort in my chest and right side. My GP said a week ago "given your history we will do a CT Scan" and "i think there is something more going on".

I had a minor panic attack that day and decided to consult google to calm myself with the fact that its absolutely impossible. Only to discover it's actually NOT and that the 98% survival rate is only a 5 year stat and that people actually do go from Stage 1 to Stage 4. I have to wait at least 2 weeks before I even see the Breast Cancer support people and have no idea when my GP will be able to set the CT scan up.

I am now in a full blown - out of control - spiraling black hole of anxiety because I didn't take tamoxifen but instead had multiple pregnancies and I pumped my body through with estrogen and progesterone.

I mean my cancer was early stages with no node involvement, so I have to believe that it's likely not cancer related, but having these fears of recurrence now with 3 year old twins is much different (read worse) than when I was initially done treatment.

Not sure where I am going with this, but having no one else to talk to at the moment I guess I am just looking for some help from the women in know who have a better idea of where I am at.

ElaineTherese · January 2018

Hi Noly!

I'm sorry you're so worried, but you're doing the right thing by having the CT scan. Knowledge is power; it's best to know what's going on in your body so you can do something about it. By the way, lots of things cause a chronic cough. I have a dry cough, which is a side-effect of one of my blood pressure meds (Lisinopril). Best wishes and I hope your CT scan doesn't turn up anything serious! ((Hugs))

DATNY · January 2018

Dear Noly, with 2 preschoolers around and this year flu season and this winter weather, it is reasonable to think first that there might be an infection going on. Of course, it is wise from your GP side to do the scan, but given all stated above I would worry first about walking pneumonia and second about cancer. Best wishes with your tests!

Alicethecat2 · January 2018

Hello Noly

Sorry you're going through this but...could it be asthma?

I've had so many symptoms post my kitchen sink treatment six years ago but all turned out to be benign.

With a Grade 1 tumour, I'm hoping for the best for you.

Alice

KBeee · January 2018

I am sorry you are dealing with this.

First of all, your original oncologist was out of line. He/she should have discussed risks and benefits, and also when you could start Tamoxifen after pregnancies. Maybe it was not common in 2010, but it is now. I hope they can schedule the CT soon. Keep on them.

Hoping all is benign. Assuming it is, why don’t you request an Oncology consult and at least have a discussion about whether or not it might still be beneficial

Noly · January 2018

Hello,

Thanks for the responses.

DATNY, I agree that cold and preschoolers should be where my mind went first and it was, which is why I waited almost 12 weeks from the start of my cough and increasing shortness of breath. I have clear lungs so she doesn't suspect an infection. I've had the pneumonia shot and updated my flu shot.

When I went to my doctor to basically request my yearly Breast MRI and discuss a few other things. I told her I have a few things to discuss but am not sure where to start. I mean I thought I had 5 separate things going on and wasn't sure what to prioritize. (Cough for 10 weeks, shortness of breath, fatigue, pain in my abdomen, sometimes I have red eyes sometimes kind of yellow tinge etc) then I gave her the list and she did some initial exams, feeling my abdomen and listening to my chest. I didn't think any of it was related to any other thing.

I have had no anxiety over recurrence since my first anniversary of end of treatment . I've put cancer in box for the last 5 years. I suppose in a way like denial like it never happened. One of my doctors once told me that 5 years was considered a cure so I am floored that she would even suggest it.

So here I am again, feeling freaking stupid and really scared.

Lula73 · January 2018

my husband picked up a cold with a nasty cough. The cold went away but the cough hung around for months. As a result of the cough he had pain in his chest and pain in his abdomen. So yes, a simple lingering cough can cause those symptoms you’re experiencing. The eyes could be allergens or fatigue when they’re red. And who wouldn’t have fatigue with twin toddlers! Hoping you find out that’s all it is and your dr was just being thorough.

Noly · January 2018

Hi Kbee,

Thanks, we have a breast cancer supportive care centre here who I looked after me when I was initially diagnosed and when through treatments. I booked an appointment to get the referral back into the Cancer center and to see an oncologist to discuss my options. Hopefully, this will just be to discuss tamoxifen or some other adjuvant therapy.

I actually had 3 oncologists discharge me from care when I was pregnant saying "there is nothing more we can do for you" so it must have been the thinking in 2011. I have always had trouble with that but as I said I put the cancer in a box and tried to forget about it. (I sometime still have flash backs to my last appointments and remember how I felt like I was being dismissed. Like if I was making a stupid choice and so they had no time for me.

wow this is really bringing a lot of stuff to the surface.

Noly · January 2018

Hi Lula,

I agree there are lots of simple reasons for all my symptoms. I suppose it's the fact that they have been chronic for more than 8 months (cough only since November) I just hadn't been to the doctor in over a year because I haven't had time. It didn't start off with cold or anything like that and I honestly thought she would say allergies or something like that and give me an inhaler or some other run of the mill response. I'm not even sure if her concern is my lungs or something else.

I guess what I can't wrap my head around the fact that I thought I was safe and maybe I'm not and really you never are even if you caught it early. When I my doctor first felt the lump (I never fell it even after diagnosis and I knew where it was) she sent me for ultrasound and I thought.. "Come on this is a bit much I just have lumpy breasts plus no one in my family EVER has had breast cancer. Not bloodly likely." But it happened and 7 years later I am one of the 98% who 'survived' 5 years without recurrence. So even though it's "not bloodly likely" I am very worried it will be.

Georgia1 · January 2018

Hi Noly and I'm so sorry about the stress and the worry; BC does that to all of us at one point or another. It's reassuring that your MRIs have been clear, and I think the CT scan and the talk with an oncologist will be helpful. But as many of us say here, "look forward, not backwards." You made all the best decisions you could make with the information available at the time, and today the science is much better but still limited. I'll be interested to know if they think the benefits of tamoxifen outweigh the benefits to you at this point.

But do know this is a good place to chat, or just vent. We are all wishing the best for you.

wallan · January 2018

Hugs to you.

Anxiety is awful when you need tests and a doctor says "given your history...." and then you need to wait for results... ugh!!

I call the anxiety over bodily symptoms "canceritis". Your doctor gave you a good dose of canceritis.

Hopefully, you have a chronic, irritating cough from a virus or asthma. Odds are in your favor that is all it is. It is good that you are getting checked out though. Unfortunately, once you have cancer in your medical chart, doctors always need to check you out. It doesn't matter if you took tamoxifen or not. They will check you out regardless.

Beating yourself up will not help the anxiety. You need TLC from yourself and hopefully others in your life can give you some reassuring hugs too.

This board has the most amazing people and support out there. So keep coming back.

Let us know how it goes..

wallan

Noly · January 2018

Thanks Georgia and Wallan (and everyone). I read your posts last night and really felt a bit better.

I was definitely having a relapse of canceritis and in a tale spin of catastrophic thinking. I've been in this place before and felt as crazy then as I do now. I know better than to consult Dr Google but sometimes I have no other immediate resources. So I'm really grateful that you were here to talk me down and bring a little perspective.

Today while I know little more than I did yesterday I now have my Dr appointments lined up and my CTScan for next week. My Breast MRI isn't' until September which seems ridiculously far away but I suppose if she didn't triage it for an earlier date than that's a good sign. I am going to try to leave all these worries here until I have answers/information I need.

And so with that plan in place I shall endeavour as they say to "Keep Calm and Carry On" which was my motto in 2010 and which I somehow forgot. I am going to get through these next few appointments, hopefully find out everything is fine and she was just being over cautious. I am going to get a plan in place with the help of the breast cancer support doctors to ensure that I am not at risk.. Then I am going to shove crazy cat back in the bag where it belongs. I suspect I'll be hanging out here a bit while I do that.

wallan · January 2018

Hi Noly:

Keep calm and carry on. I like it. Here is something else that helps.

Noly · January 2018

I also found this... They are the slides from presentation:

Anxiety and Depression After Breast Cancer

https://www.lbbc.org/sites/default/files/Anxiety%2Band%2BDepression%2BAfter%2BBreast%2BCancer.pdf

Oh and this video... Coping with the Fear of Anxiety...

jo6359 · January 2018

Noly- everything you're experiencing is normal. I know that doesn't help but it is true. Try to think positive as much as possible. And no you have a great support group here.

Noly · February 2018

My scan isn't for a week and I am struggling to focus on anything else. My husband has been home from work for the last week but left again this morning, so I am alone with these thoughts again.

I have appointments the day before the scan set up to talk to Breast Cancer Supportive care people who will I hope be able to help me through this relapse into Recurrence Anxiety and "Canceritis" but until then, I am can't really vent or talk to anyone.

I don't feel like it's fair to bring this fear into the lives of Mom or sisters, so I am stuck dealing with the "what ifs" by myself. I know that I could tell them but they don't truly know what it's like to feel this uncertainty, and they don't really know anything more than what I have been telling them that "5 years is a cure" which is what I was told when I finished my treatment. But what I didn't understand is that its no guarantee, and I can't tell them that. My cancer was pretty much swept under the rug and dismissed when I was first diagnosed. I went through this alone (with my now husband who was then only a guy I had been out with a few times). To be fair, I live in a different part of the country, and everyone else was busy and focused helping my Dad who was undergoing Cancer Treatment back home. But really, having never walked in these shoes, they can't relate anyway.

I know it's a normal reaction to a terrible thing that has happened in my past. I'm plowing through my everyday pushing these thoughts away and down and pretending I feel fine. But Cancer dreams are back and so are the restless nights and they seep into my thoughts whenever I let my guard down.

It's good to put the words down and therapeutic in a way so I'm just here posting in this same thread so as to not clutter up the boards with my baloney, and hoping I don't piss a lot of people off with my paranoia. We've all be here at some point so I hope you can forgive me.

Georgia1 · February 2018

Noly, we totally get your stress and need to vent. No worries there. While you're waiting for the scan, I can only suggest walking, running or whatever your favorite form of exercise is; keeping to your daily routine; and treating yourself to the small things that lift your spirits, like a bouquet of flowers or a pair of shoes. (I so believe in the power of shoes!) I think you're right about not worrying your mom or sisters, so perhaps pick one good, stable friend to talk to and also keep posting here. Keep Calm and Carry On!

KBeee · February 2018

Vent anytime. I find journaling and long walks helpful too.

If you can engage your mind in something... crosswords, jigsaw puzzle, go volunteer somewhere..... it’ll distract you

Noly · February 2018

My appointment with the Breast Cancer Supportive Care doctors is tomorrow. They are not oncologists but their practice is focused on supporting women diagnosed with BC from initial diagnosis through treatment/recovery and survivorship. They are best able to help support me to get past this relapse of Recurrence Anxiety and as well get me back in with the Oncologists for routine yearly testing rather than going through my GP.

Been actively telling myself that there is nothing to worry about. I mean it just has to be nothing to worry about.

Just wondering if anyone has any suggestions about what I should be asking?

Also, my CT Scan is Wednesday. How long does it normally take to get results?

P

KBeee · February 2018

I would ask how long until you should expect results. I would also ask how they'll address the cough, assuming it is not breast cancer. I would want a breast exam, MRI, and perhaps blood work. Keep us posted. Thinking of you.

Noly · February 2018

Reporting in so as to bring this thread full circle.

I haven't spoken with my GP (the doctor who set me on this recurrence anxiety trip) but have had word from the Breast Cancer support doctor who let me know that she had been waiting for my CT Scan report. She called me on her day off and let me know that according to the report everything is fine. My CT scan was on my abdomen and not my lungs, but the report states everything is normal. This scan also covered the nodules they found on my back in 2013 but they remain the same, only 1 of the nodules could be biopsied in 2013 so this is also huge a relief.

So, although I continue to have constant pain on my right side it's definitely not due to a cancer recurrence and is thankfully some benign reason. We will figure that out but I already feel such relief and so much lighter.

I still have this cough that is extremely frustrating and is wearing me out, but none of the doctors are overly concerned. I'll wait for my Breast MRI in October and try not to worry to much.

The Breast Cancer Support doctor is going to be following up with me on all aspects of my post treatment scans etc and has ordered a breast ultrasound in advance of the MRI. She has also going to help me through this latest bout of canceritis.

Feeling good and happy to have someone to follow up with. Thank you all for your support through this.

P

KBeee · February 2018

Great news!

Needing Support and maybe more than a little hand holding.

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