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Follow up care 1 year post-mastectomy (L-side only)

Follow up care 1 year post-mastectomy (L-side only)

Posted by Scarletkate on Oct 16, 2020 5:52 pm

So, I had my 1 year follow up appointment (with my oncologist's nurse, not the oncologist) and I had a lot of questions prepared.
She asked the questions she was supposed to ask, and none of the questions I had planned to ask her were answered.
So they were: 
Future mammograms - when are they scheduled.  She said I can schedule one for you.  I really thought that is something she should have been bringing up.
I asked her about the increased risk of endometrial cancer when taking Tamoxifen.  She asked me if I was having any symptoms.  I said no.  She said to call them if I had any symptoms.
That does not seem right to me.  Shouldn't I be being screened somehow?
I asked her if there was anything else we should be doing that we haven't in terms of monitoring for recurrence.  She said no.
Today I received a letter scheduling my mammogram for early November and my next follow up in April 2021.
HOWEVER, I also received a letter indicating that I was booked for an MRI a week after that.  She did not say anything during our telephone conversation about booking an MRI for me.
Of course, I picked up the mail after their offices were already closed, so I can't find out about it until Monday.  
I have so many questions but my number one right now is:  Is it typical to have an MRI scheduled one-year post-mastectomy?  
Does anyone else on Tamoxifen have gynecological screening for endometrial cancer? 
I'd also be interested in hearing what people think of the "virtual care" many of us have been receiving due to COVID-19.  
Thank you and take care.  
 

Re: Follow up care 1 year post-mastectomy (L-side only)

Posted by Wendy Tea on Oct 16, 2020 7:51 pm

Scarletkate‍  Yes we are on similar paths. I had a mastectomy 18 months ago.  Mammograms are every 6 months.  Because of covid, I am keeping track and reminding my team. My family doctor did a pelvic exam. She did her best but I told her I would never have another.  I thought she was trying to remove my tonsils!  So I am to watch for any sign of pinkness or bleeding and to go straight to emergency if I notice any. I couldn't handle Letrozole so that is why I am on tamoxifen. 
Don't worry too much about the MRI. They might simply be covering all the bases. 
 
Healing takes time and opportunity. Wendy Tea

Re: Follow up care 1 year post-mastectomy (L-side only)

Posted by CCC888 on Oct 16, 2020 10:53 pm

Hi Scarletkate‍ , 
To share my experience.
My primary diagnosis was in 2011. Stage 3A, triple positive, right sided mastectomy. 43 yo so was put on Tamoxifen for 10 years. I was discharged from hospital 4 years after I finished all the active treatments (surgery, chemo, radiation) . I would say my follow up care in the 4 years was extremely minimal !!  My bone met was found accidentally 7 years later in a x-ray due to other issue.
(1) Had half yearly appointment with my oncologist. Every time he examined my healthy breast, my abdomen (pressed here and there), checked blood pressure, listened to my lung breathing. Never arranged any scans to any part of my body .(with or without my request) 
ps. I had requested for a tumor marker test  annually but obviously was turned down. 
(2) I needed to remind my oncologist every year to get the annual mammogram. (for my healthy breast)
(3) In case any tamoxifen side effects like UTI, acid reflux, if happened close to the appointments, he might prescribed some med otherwise he always asked me to see my family doctor even I called him.
(4) it was my family doctor did the pelvic exam every 2 years upon my request.

I am receiving treatment under BC cancer agency (in Surrey, BC). I am always very interested in comparing the note what treatment (down to what drugs, what new treatment, what new radiotherapy technique, such and such) , what other service, etc  are provided in other provinces. 😀 
 

Re: Follow up care 1 year post-mastectomy (L-side only)

Posted by JenDavid on Oct 17, 2020 7:25 am

I've been on Tamoxifen for a year now. Was very worried about this increased possibility of endometrial cancer and pushed my oncologist for more info. I read that it increases your chances of getting it however my oncologist said that every woman has a 1% chance of getting it. Tamoxifen increases that to 2% I hope he is correct because that made me decide to take it. And I do monitor closely for any discharge or bleeding to be on the safe side. 
I'm in Ontario, back with my family doctor. I get a physical exam at the six month mark and a mammogram every year, on my remaining healthy breast.

Re: Follow up care 1 year post-mastectomy (L-side only)

Posted by CCC888 on Oct 18, 2020 12:04 am

A terrible TYPO in my previous post. "Pelvic exam" should be read as "PAP test" 

(4) it was my family doctor did the pelvic exam PAP test every 2 years upon my request. 
ADDED:   ps.  My family doctor had referred me to my second child Obstetrician (a Gynaecologist as well) who did my 1st PAP test after my primary treatment, 
 

Re: Follow up care 1 year post-mastectomy (L-side only)

Posted by Wendy Tea on Oct 18, 2020 12:18 am

CCC888‍  Please don't worry about typos. My biggest problem is auto correct!  Take care.
Healing takes time and opportunity. Wendy Tea

Re: Follow up care 1 year post-mastectomy (L-side only)

Posted by ashcon on Oct 18, 2020 9:14 am

JenDavid
Did you say you are getting physicals every 6 months? I am in Ontario as well and am due for one from my GP, but am told that, due to covid, they are not permitted to do physicals. Are you actually having physicals done? Tell me more! 

CCC888‍ 
Your experience with your half-hearted follow ups and importance of self advocacy are lessons for all of us. 
I am glad your mets were caught at all, and I hope your treatments are working well for you. 
I was diagnosed with Triple Negative (stage 3), so am not on any hormonal therapy treatments, but experience the same lack of solid follow up testing activities. (Aside from questions, "how are you feeling?" and the NP listening to my heart, lungs, and feeling chest and abdomen). 

I am also due for a PAP, but after watching this interview with CBC Radio's White Coat, Black Art, I'm going to ask for an HPV test instead (as well?) and copies of all my actual cervical exam screening results and reports (not just relying on the 'negative results' letters from Cancer Care Ontario). 
https://www.cbc.ca/radio/whitecoat/it-could-happen-to-anyone-this-mom-recorded-her-own-eulogy-to-advocate-for-better-cervical-cancer-screening-1.5760743

Health, wellness, and advocacy for all of us! 
---- "Nothing ever becomes real till it is experienced." ----

Re: Follow up care 1 year post-mastectomy (L-side only)

Posted by Cha67 on Oct 18, 2020 12:46 pm

Hi , I just had a mastectomy on left side last month . I  may have a  choice between  1 time only radiation or tamoxafin , very scared to make the wrong choices. Char 

Re: Follow up care 1 year post-mastectomy (L-side only)

Posted by CCC888 on Oct 19, 2020 1:13 am

Cha67‍ 
Hi Char, 
Maybe I was wrong, my understanding from the breast cancer forums the standard treatment protocol for ER+ breast cancer is surgery(ie. mastectomy, lumpectomy) , radiation (ie.3-4 weeks or 1 week accelerated radiation) and/or chemo which depends on stage, age and oncotype score.  
I am obviously not a medical guy. You may have the same questions as me and you may want to clarify with your medical team.
(1) radiation is a local treatment, tamoxifen is a systemic treatment, why you are given the choice between 2 treatments with different purpose?
(2) Does 1 radiation means 1 session ? Will it offer the same benefit as the standard schedule of 5 radiation over 1 week or 15 radiation over 3 weeks?
(3) Your mastectomy is at the left side near the heart. Will radiation be limited to the mastectomy area? Do you need to hold the breath during  treatment (with the older machine) or the machine can handle it to avoid damage to the heart 
ps. my mastectomy is on my right side so my radiation onco explained to me I didn't have the problem 
(4) if tamoxifen , how long will you be on the drug
(5) When my onco discussed the treatment plan with me in 2011, I let him know I was ready to put in everything to get cured. Everyone has their own preference, you may want to let your onco know your preference then throw the ball back to him and let him decide for you. 😀 

ps. The below tool , which I found from a UK based breast cancer forum, may help you to decide which treatment (or combination) will give you the most benefit. The information is based on the database of breast cancer patients in UK.
https://breast.predict.nhs.uk/tool

Re: Follow up care 1 year post-mastectomy (L-side only)

Posted by Essjay on Oct 19, 2020 7:50 am

I didn't have a mastectomy, but lumpectomy, but just wanted to follow up re ‘follow-up’...

I am supposed to have 6-monthly physical exams but haven’t had one since January. COVID has confused things but it actually came down to miscommunication and assumptions. My oncologist assumed that my family doctor would be giving me regular check ups but never asked me, and my poor family doctor is fighting her own cancer battle (multiple myeloma) and not practising and may not even return to practice which leaves me without a family doctor for now (we have a shortage here and I haven’t been able to register with a new one, not even an NP). I Kept having in-person appointments changed to phone calls and had to really advocate for myself to get the exam that is happening this week.

My protocol is six-monthly physical exams, annual mammograms (so far they have been scheduled by my oncologists office), and annual MRI, because I have extremely dense breast tissue and me last mammogram basically said ‘we can’t see anything because of dense breast tissue’. My first MRI is today, and I’m nervous because I’ve never had one before, I’m claustrophobic, and I have a workshop at work after which means I’m planning to try without medication 😬😬
Triple Negative Breast Cancer survivor since July 2018

Re: Follow up care 1 year post-mastectomy (L-side only)

Posted by dmarie on Oct 19, 2020 9:40 am

Hi Essjay‍  I did my treatment through Cancer Care Manitoba (mastectomy, chemo, radiation) and 2 months after it was completed I was sent back to my family doctor. I do not have any contact with my oncology team. I get a mammogram every 6 months and can also get an MRI once a year. I had my last physical 4 weeks ago and, as I had a bit of back pain, she also sent me for a bone scan (which came back negative - yeah). My advice on the MRI is to make sure you keep your eyes closed the whole time. Mentally picture yourself doing something entirely different - hoking a favourite trail maybe. It is very tempting to open your eyes when you feel like you have been in there forever but force yourself to keep them closed until the technician says "All done".  Good luck.

Re: Follow up care 1 year post-mastectomy (L-side only)

Posted by TT53 on Oct 19, 2020 10:27 am

CCC888‍ the site that you quote https://breast.predict.nhs.uk/tool is the tool my oncologist used to explain the odds of the cancer returning using hormonal therapy or going without.  It is a very visual chart and easy to understand.  
I also had a left side mastectomy November 2019 and was told 6 months follow up, but due to covid did not happen.  Just had my exam and my supposedly 6 months mammogram and thankfully all is OK.  Now I just go on the 6 months GP exam and yearly mammogram rotation.
My concern is that no one doing any tests, how do you know if your cancer has matestasized elsewhere?  Always a worry.
M..

Re: Follow up care 1 year post-mastectomy (L-side only)

Posted by CCC888 on Oct 19, 2020 1:33 pm

OMG. another terrible TYPO. 

my understanding from the breast cancer forums the standard treatment protocol for ER+ breast cancer is surgery(ie. mastectomy, lumpectomy) , radiation (ie.3-4 weeks or 1 week accelerated radiation) and/or chemo which depends on stage, age and oncotype score and hormone therapy (ie. AI, tamoxifen)

When I was typing, heard some cling cling sound from my dryer and got distracted. 
 

Re: Follow up care 1 year post-mastectomy (L-side only)

Posted by Scarletkate on Oct 19, 2020 5:22 pm

Well, the mystery about the MRI test being ordered solved but now I am more worried than ever.  My BC surgeon requested it.  There had been findings of a benign cyst on my chest on the MRI I had done pre-surgery. No one ever told me anything about it.  It was suggested that a follow-up MRI be done in one year.  Thankfully my family doctor scheduled that for follow up in my chart.  It was he who reminded the surgeon that she was supposed to book me an MRI in September.   Has anyone else had a similar experience with benign chest cysts?  

Re: Follow up care 1 year post-mastectomy (L-side only)

Posted by Essjay on Oct 19, 2020 8:44 pm

I ended up needing sedation for the MRI, and quite honestly I really don’t know why I didn’t start with the assumption I needed it. Trying to put myself through the stress of a new anxiety inducing experience and think I could cope for 30 minutes was too much. Deep breathing exercises got me into the room but they are no good when your chest is being imaged. The sedation made it easy. And boy is it loud in there even with earplugs and headphones!

Hubby came to pick me up and my car remains in the residential area I left it in probably annoying someone. We will collect it tomorrow.

I didn’t make it to the workshop at work after, and the afternoon was a loss as I was spaced out and mildly nauseous.

However, I would recommend the ‘benzo’s’ to anyone going through this - why stress yourself out!
Triple Negative Breast Cancer survivor since July 2018

Re: Follow up care 1 year post-mastectomy (L-side only)

Posted by Scarletkate on Oct 20, 2020 9:27 am

Essjay‍ I was going to suggest skipping the meeting after the MRI, but we all know our own limits (or figure them out).   I talked with my surgeon and she's sent off a prescription to the pharmacy for some Ativan for me to take before the MRI.  I still need to clarify if it is a regular MRI or just a breast MRI.  I was okay with the breast MRI.  It's the regular one that I have issues with.  Glad  you got through it.  Take care and stay safe.  

Re: Follow up care 1 year post-mastectomy (L-side only)

Posted by Lacey_Moderator on Oct 20, 2020 1:09 pm

Essjay‍ - I'm glad you got what you needed to get through your scan.

I hope you are feeling better today.

Lacey

Re: Follow up care 1 year post-mastectomy (L-side only)

Posted by Lianne_Moderator on Oct 20, 2020 1:30 pm

Essjay‍ 

Happy to hear that you got through it in the best way for you. The car and meeting are all secondary. And yes the noise is incredible. I have had many and just recently had one to check on my ears/hearing. All I could think of is that if I didn't have hearing loss before the MRI I sure will have after.

Take care
Lianne