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What to do?

What to do?

Posted by LadyW on Nov 9, 2019 10:33 pm

I had a single mastectomy on Sept 4th for Invasive Ductal Carcinoma.  After surgery, I was told that pathology showed I had clear margins with one cancerous node.  I am ER+PR+ HER2-.  My tumour was less than 1 cm, so am considered to be stage 2A (also classified as Luminal A).  The surgeon told me that he got it all and I would only need to take an estrogen suppressant for 10 years with mammograms on the other breast every year.   No chemo, no radiation.  I was sent to a medical oncologist and she prescribed anastrozole and said that chemo would not make a big enough difference to my survival numbers to warrant it and would likely be detrimental to my body. So, no chemo. My age, 72, also played into her decision.  Then I was sent to see a radiological oncologist and she says that because of the one cancerous node, I would need 16 sessions of radiation because there is a 30% chance of recurrence of the cancer without it.   So, my dilemma- radiation as recommended by one doctor or no radiation as recommended by another?  Has anyone else been given conflicting information like this?  What should I do? Who do I listen to?
 

Re: What to do?

Posted by Cynthia Mac on Nov 10, 2019 9:08 am

Hi, LadyW‍ , I have no experience with breast cancer or radiology, but I do note that it was the surgeon who said “no chemo, no radiation,” yet he sent you to both an oncologist and a radiologist. 

When my Dad had lung surgery, his doctor sent him to an oncologist, too. The oncologist “offered” chemotherapy, saying that if Dad was in his 50s, he would be “strongly advising” it, but due to his age, he was offering it as an option. It almost sounds as though this is what’s happening to you with the radiologist. (At the time, Dad’s chance of recurrence was 50%, and despite doing the chemo, it has recurred.)

I’m going to tag some of the ladies on the site who have been through BC treatments: Elizabeth06‍ , ashcon‍, Kims1961‍ , and Lianne_adminCCS‍ . Hopefully some of these ladies can offer some more information for you.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: What to do?

Posted by Wendy Tea on Nov 10, 2019 10:37 am

LadyW‍ , My situation is similar to yours except my nodes were clear. As I see it one problem with the medical system is everyone is so specialized. The surgeon knows surgery. The oncologist knows chemicals, the radiologist knows radiation. Each one does their best to help you survive. 30% is a big number. I would ask the radiologist a lot of questions before I made a final decision.
Wishing you all the best,
Wendy Tea 
Healing takes time and opportunity. Wendy Tea

Re: What to do?

Posted by ashcon on Nov 10, 2019 11:24 am

Hi LadyW

Congratulations on getting through surgery! 
I'm glad to hear that your breast cancer was caught at this early stage. 
As Wendy Tea‍ says, you soon discover that your medical team is made up of folks who specialize in their own area.  I believe they try to be helpful when you ask questions that are not in their area of expertise, as they know you are craving information. But if the topic is radiation, then I would lean towards heeding the wisdom of the radiotion oncologist. 

In my humble opinion, I think that if you feel you can withstand the radiation, then I would go for it. I had 25 rounds of radiation, after chemo and two surgeries, and didn't fare too badly.  

I guess you could ask yourself if you'd be willing to risk a recurrence (and 30% does seem high), and, f it does recur, will it be caught early again? Or will it be caught at a later stage and require more aggressive treatment? 
You could ask your radiation oncologist what are the factors that is making her come up with that number of 30%?

Personally, I would do everything possible at first go-around to get rid of the beast, but it is a decision each person must make depending on their own personal situation (physically, emotionally, psychologically). 

Hope this helps a bit!  Don't hesitate to also call a Cancer Information Specialist - they are very helpful in explaining and interpreting "standard of care" treatment options. 

Ann (ashcon) 
---- "Nothing ever becomes real till it is experienced." ----

Re: What to do?

Posted by Kims1961 on Nov 10, 2019 12:27 pm

LadyW‍   Welcome and you have received some excellent responses so far.

When i was diagnosed - my surgeon said my cancer was small, caught early so no further treatment would be necessary - boy was she wrong!! Not her fault -its just they really never know until the pathology comes back.  My mindset was - ok -I'll do the surgery but no chemo and radiation.  More out of fear than anything.  When pathology came back as unclear margins and ER+ and HER2+  -I had to change my mindset.  Now the recommendation was for chemo and radiation. I had to examine why i was so against these treatments  - 

I think the hardest part was up to finding my lump I was healthy - didn't smoke/drink/ loved exercise and ate fairly well 🤔 . It was a hard shift to go from there to being a "patient" with interventions and hospital visits.  I'm glad I did now - I realized my reluctance for treatment was based on ?  What? not sure.  It wasn't as bad as my "mind" had envisioned and if things got tough - there was help.

Would your family doctor be someone you could discuss this situation with to get another opinion?  I had to remember my surgeon - wasn't an oncologist - so even though she thought treatment wasn't necessary, oncology sure did. 

Glad you reached out.  It is a challenge when we get differing medical opinions - glad you posted.  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: What to do?

Posted by Marsh on Nov 11, 2019 6:01 am

I had a lumpectomy. Margins were clear and no lymph node involvement. My surgeon thought I would need radiation but no chemo. After speaking to my Oncologist and getting results from the Oncotype DX test we decided that 4 cycles of chemo would benefit me. After that I did 25 + 5 radiation treatments which I had no problems with. My radiation oncologist told me that with the Rads my chance of  recurrence was brought down to around 3-5%. I am 64 years old. If it were me, I would do the radiation now and whatever you can to stop it. It will be over before you know it and you'll never have to wonder if you should have.

Re: What to do?

Posted by JustJan on Nov 11, 2019 10:17 am

I was diagnosed with Stage 1 triple negative breast cancer. I did do radiation and I like to refer to it as the clean up crew. My Radiation Oncologist said should kill any wandering cancer cells that may be in the breast or around the lymph node.  I found radiation to be pretty easy so like ashcon‍ said, if you think you can tolerate it, it might be worth doing. If you have more concerns it might be worth talking with the radiation oncologist again. I’m sure you will make the decision that’s right for you.
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers

Re: What to do?

Posted by LadyW on Nov 11, 2019 10:33 am

Thank you everyone for your thoughtful replies.  I am not against having radiation, but was just wondering if it is really necessary.  My main concern is the timing of these treatments-probably starting in December.  I live in the rural Alberta foothills and getting to the cancer clinic at this time of year can be daunting. I plan to talk to the radiologist to see if it can be postponed until spring.  

Re: What to do?

Posted by Simi on Nov 11, 2019 10:48 am

Having  a positive lymph node I would take the radiations to the armpit ! It’s just an extra layer of security and I would trust the radiation dr in her /his recommendation! I’m doing radiations right now at the cross cancer as I opted for a lumpectomy vs a mastectomy 

Re: What to do?

Posted by Lacey_Moderator on Nov 11, 2019 12:54 pm

LadyW‍ 

I just wanted to let you know about our Wheels of Hope program it may be an option to help you get to those radiation appointments if you are not comfortable driving in the winter.

Here is a link to more information: http://www.cancer.ca/en/support-and-services/support-services/transportation-ab/?region=ab

Wishing you well!
Lacey

Re: What to do?

Posted by Bambam on Nov 18, 2019 4:36 pm

Hi...I had a mastectomy in September 2018, low grade breast cancer, lymph nodes clear....started on anastrozole...terrible side effects..then diagnosed with osteoporosis...(Anastrozole causes bone deterioration)..IV treatment causes jaw necrosis..not treatable,,,I have had prior multiple surgeries on my jaw..bone grafts, Implants,screws,etc etc..(childhood accident)..so stopped Anastrozole...then on to tamaxofin...side effects worse...especially brain fog...so took myself off this....NOW, treating myself with Wonderful foods..ie..flax, teas, tons of fruit/vegs..exercise daily..power walks..and now feeling great...positively powerful and fit.....I am willing to take the 8% chance of recurrence (given to me-not taking drugs).  and just live a great life...lucky I have a great oncologist who is with me on this...  ( I just copied this from a previous post)!!!...one year later...all good...still doing lots of exercising...healthy eating. And some red wine..even...).   Good luck!!!!