Crippled with the fear of recurrence - ILC

Hokster

I've recently completed treatment for stage 2a ILC (4xAC, 12xT & 30 rads) and begun endocrine therapy (AI). Throughout my treatments, I was able to maintain a fairly good perspective. I was told that my prognosis was favorable, particularly in light of a relatively low oncotype score of 13, and I believed it. I felt confident that I needed to go through this process and would come out of it fine. As I am now in the midst of planning my return to full time work in a few weeks, I find myself crippled with constant thoughts of recurrence and the fear is taking over my logical thought process.

As is typical with ILC, the cancer wasn't detected through traditional screening processes. Mammograms, ultrasounds and MRIs were unsuccessful in detecting it. I felt the lump myself and guided the ultrasound technician to it, as she was unable to find it. The path report for the biopsy revealed a small tumour and concluded no lymph node invasion, which proved to be wrong. The tumour size as twice as large as was initially thought to be, and 1/3 nodes were involved. No doubt this experience is contributing to my current thoughts and lack of confidence in the stated outcome/prognosis.

I find myself constantly wondering whether other tumours may have been missed (given ILC is prone to be multi-focal & mutlicentric). Since chemo is at times not recommended for ILC (given that the risks may outweigh the benefits since ILC tends to not respond as well to chemo), I wonder whether the cells may have travelled through my lymphatic system and/or bloodstream during chemo - before I started radiation and hormone suppressants. I have had gastrointestinal challenges and have read that this area can be a common site of recurrence for ILC. A urine sample recently completed has come back with microscopic blood, which despite reassurance from my doctor that this is likely an asymptomatic urine infection (I'm being re-tested), my mind has gone straight to bladder cancer as the main culprit. In short, I'm struggling with finding the balance between maintaining a level head and being vigilant about my health.

Has anyone heard of ILC recurrences so soon after initial diagnosis? I'm told ILC tends to recur much later than IDC (6+ years), but I can't help wondering whether something hasn't been missed. Anyone experience missed tumours? I'd love to hear any and all experiences you've had with ILC & recurrences, and how best to manage these fears.

XX

readytorock

I have pretty much exactly your same case. And I'm still here and showing no signs of reoccurrence 3.5 years later

Catsme

I just celebrated one year from DX and surgery. I had a lot of reoccurence anxiety in the first several months. Some days I was afraid to even get out of bed, and every ache, pain, bump, and pimple was a reoccurence. What helped me was time, seeing a councilor who works with cancer patients, and going back to work. My BS & MO listen to my concerns and do everything reasonable to help me regain peace of mind. I am also taking Celexa.

I still have "Oh no" moments, but I try to follow the 2 week rule that I picked up in this community. If something new comes up, give it 2 weeks, and if it doesn' resolve see the doc. Of course the 2 week rule doesn' t apply to symptom of heart attack or other emergency issues.

My MO says, "Don' t give cancer anymore of your time than you have to."

Time is the great healer, and this does get better.

Moderators

Hokster, we all understand how difficult it is to find that balance.

Here are some tips to help you manage recurrence fears: http://www.breastcancer.org/symptoms/understand_bc...

Catsme, great advice from your MO!

Hugs!

Hokster

Thbknyou all for the reassurance. It does feel good to know that others understand.

My itinerary test came back negative for UTI but still positive for blood. Anyone have any thoughts on likelihood that this is linked to cancer somehow

Catsme

Many years ago, I had a kidney stone and the first sign was microscopic blood in my urine. Didn't even have a lot of pain with it until it started to pass. Has your doctor recommended a follow-up?

Hokster

Yes,, she is sending me to see a urologist. I do have abdominal tenderness and nausea. Not sure if it is related or not. Thanks for your help

Catsme

Keep us posted. I'm not a doctor, but everything you've described can be symptoms of a kidney stone.

KBeee

I am followed by a urologist every 6 months because I have microscopic blood in my urine. The Cytoxan chemo is known to be a bladder irritant. It could likely be from that. Though my urologist tests me every 6 months, it is unchanged. I have no UTIs and my cystoscopy was completely clear. They now think I will probably just always have microscopic blood in my urine. It could be from the chemo or it could potential he have always been that way. I tend to think are used to test that way as well, but they always just told me it was likely from being female. Microscopic blood can also simply be from skin irritation in that area.

The fear is real, and the fear is hard. The thing you have to remember is that worrying will not keep cancer away. What worrying will do is make your life much more stressful whether or not cancer ever comes back. In time, the worrying will ease. In the meantime, do not let cancer take more than it already has from you. Find ways to be distracted and people to talk to. Best wishes. Hoping your appointment with the urologist yieldssome answers.

Hokster

Thank you all so much. Well said Kbee. I will keep repeating that to myself.

Grains

I don't know if the fear will ever totally go away for me.. even though it has been many years.. I had my first BC in 2003...invasive ductal with no lymph involvement and mastectomy with chemo it was also triple negative. I wanted to have a double mastectomy but my dr said no it would not come back. 6 years almost to the day I was diagnosed in the other breast it was estrogen sensitive so I had another mastectomy and have taken Arimidex ever since. Last year my new cancer dr had the oncotype dx test done on my last cancer and said it would be best for me to keep taking the arimidex for a total of 10 years as the test showed it could possibly come back if I stopped. Well this just made all that fear come back. In the back of my mind I am thinking ...after 10 years (which is 2019) then what? .. will it come back or am I magically cured. What do you think? I have decided to live and enjoy each day I have but I still feel like I have a monkey on my back especially since many of my friends have been diagnosed with a second Bcafter many years. This probably sounds silly to those. Of you who are in an active battle with this beast......I do try to help those around me who have cancer and try to focus on my family, God, and helping others...I know that cancer doesn’t define me and I am grateful for each day....thanks for listenin

grainne

hi , Grains. I'm absolutely sure everyone of us on these boards knows exactly how you feel. Most of the time I'm grand but from time to time something I read or hear triggers anxiety and I can think of nothing else until I calm down. Coming up to my annual mammogram I can hardly function. Two things helped me. The first was my consultant telling me that at my age ( then 57 ) I had a 20% chance of dying within the next 15 years of some other cause. ...much greater than my chance of dying from bc. I don' live my life in dread of that: it is clearly absurd therefore to live in fear of the much smaller risk. Secondly, I understand that more women with early bc die from cardiovascular disease than bc. I can do something about that risk and I do, by eating well and exercising, which I would never have considered prior to diagnosis. I may, therefore, have actually improved my chance of survival overall.

Other than that , I don' t know how to deal with fear. Maybe just recognise it, acknowledge it and pass on. Don't let it spoil today and deal with tomorrow when it comes. X