Canadians in British Columbia

Hi, ladies

Looking for your input and perspective on my dilemma.

Had a lumpectomy back in Jan. currently going thru chemo. Met with Radiologist the first time, she think my margins are too small, 0.5mm in two places, she wants minimum 2mm. I asked her whether I should get a mastectomy, she said she doesn't think so. but if I go for mastectomy, I will no longer need radiation.

So my options are: Recision + radiation (left breast) or mastectomy.

What I am not understanding is why radiologist didn't think mastectomy was necessary? wouldn't it outweigh the risk of radiation?

Please share your thoughts.

I did mastectomy to avoid radiation.

dobie I can't answer your questions and might ramble on but I did have double mast. Preventive left masectomy as right was full of mixed types cancer and i felt I made a good choice as the biggest ILC tumor is known to go to other breast. I'm diagnosed as ILC.

My point is I'm no longer worried about getting cancer on other side. so for me I felt NO breast was relieving.

Avoiding radiation might be nice. I just found out there is small scarring in lung where they hit me while doing breast rads. It probably was unavoidable and I hope down the road it doesn't bother me. One thing about rads is I have to stretch out the breast area scarring a few times a day as it's sooooo tight. I did get the most one can get and maybe that's my problem to being stiff as aboard.

With masectomy you can get lymphema because there are a few nodes in there that go. This could disrupt the lymphatic system, not usually but very small chance. If you get one node out of armpit even sentinel node test you ARE at risk. Dont believe your doc if he says no. That means he has not spent more than 15 mine in med sch on the lymph system like most docs. I have lymphedema.

I think moth has some good articles. I notice she ususlly has research at her finger tips. I like that!

Just thought I'd give you some other things to think about that may have not crossed your mind.

Nite all

NVDobie, It is really shitty that we have to deal with personalities on top of everything else. Do you mean the residents working with the MO? I liked some of them better than my MO. You can change MO and if you don't want to do that I would mention to your MO how you feel about that one person and maybe they can avoid having that person there. Sometimes they only have one resident at a time and they have to be trained and they wouldn't change that for you so you might have to switch MOs.

I decided to just stay with mine and depend on people here for answers.

Hope things get resolved.

NVDobie. The polite and professional way is this. “ last time I saw “madame x" and I felt so uncomfortable with her, could I see just you or just have her observe with you without her input “ or something like that. Docs ears prick up when you use the polite word ,"Uncomfortable" which basically means you dislike or disapprove of that persons comunication etc. If they press for further reason just say. Our comunication style differs. They usually don't press further.

Edited to add: I like your comment. Positive energy only. You could say I don't receive the positive energy I need at this time from madame X. That sounds polite enough.

Asking me why I want to know something about my health would put me over the top. I would say "Why do you want to know why I want to know?" and I would be genuinely curious to know why they want to know. That was a condescending question and I would point that out to her. Mind you I am ok not being liked after all these years of condescending doctors so they don't get away with much. :-)

I'm glad you are following up on being treated that way. If she is older she has likely changed specialties and got away with this behaviour in the past. She needs to be more sensitive. Anyway, that's her problem and I am ranting because I am angry on your behalf. Let us know how you do.

Me again;

I added my diagnosis - such as it is.

thx

I'm so sorry Bluesky, It is scary when first diagnosed and you don't know what to expect. Hopefully you will be comfortable asking your surgeon and oncologist all the questions you have (start making a list). Usually with a lumpectomy they recommend radiation but the rest I am not sure since mine was different and I don't want to give wrong info. I had mastectomies to avoid radiation but many do fine with it. Grade 2 is not as aggressive as grade 3. It would be good to get your reports to know size of tumour and Her2 status.

This thread is quiet in the evening and I just wanted to let you know that you aren't alone and there will be more answers tomorrow. Be good to yourself and vent here as much as you need to.

Editing to add that i saw your information on your profile page and see that you do know your Her2 status. Good that it is negative.

So many of you are here which I am so happy to see after a period of quiet. Thanks hugz4u to mention me and I do normal chime in. Getting back from 4 weeks in NZ followed by numerous appts and a CT scan (stable), I was in Vancouver by the end f that week for celebration of life service and wake plus another fun day hanging out with 3 generations of family plus friends. Our wonderful friend died of CJD, not 3 months after diagnosis. I was back briefly in Victoria returning to Vancouver to spend the last 3 days with his wife. Tiring but also so good. Home tomorrow and I want to respond several of you and I will.

Bluesky69, my beginning was all at MTSJ hospital and was all good other than cultural issue with the very nice Filipino nurse navigator who called me dear and honey a few too man times. Decades ago in nursing school we wee warned not to call patients such "endearing" terms as they may come across at patronizing. Once I saw the breast surgeon and a lumpectomy excisional biopsy) that pathology had me learn the patience of what we call the "waiting game." Mine was 3 weeks and the results were surprising to everyone as my cancer was much more than expected given my age and that it was IDC. But m BS was good with me though many dislike her bedside manner.

Until the pathology comes back it really is unknown territory.One thing to keep in mind is that each and everyone of is an individual from the beginning and right through. Please remember we are here for you and ask any questions that come up. Even now, into year 6, I like to know that we have friends here at BCO. This site has been a lifeline from the start.

Hugs, Mafrian

Thank you for the head's up! Will let you know for sure : )

Mariane,wow you have really been rocking the west coast since you got home. I don't know what kinda Energizer battery's you have installed in you, but they must have some kind of anti cancer, anti fatigue serum in them. You have literally not stopped since before NZ trip! BTW it was so nice to support your friend for three days. It's niceto give back isn't it!

Bluesky. Sorry bout diagnosis. Ugh rots! Your here stuck with us, glued to the hip.We're happy bunch at least. Waiting game is so hard. Use this time to enjoy yourself fully to do whatever you want to do in life before you get chemo and other time sucking appointments. I'm being honest here. Cancer can be time consuming and tiring. You've got the get up and go now so Go get pedi, walk the sea wall. Enjoy the boys. Long weekend getaway would be nice. You may also want to start a journal just to get your feelings out on paper. It's healing. Of course you can rant all you want here. We know what it's all about. Been there done that! Ps. Mariane will lend you her special energizer battery's when you really need them! Wish you a really nice family holiday.

wrenn

Thanks for your support. I found out today during my chemo session that she is a fellow. Will ask before next appointment nicely whether I can be seems by other resident or fellow if my MO is busy.

Moth and everyone

Do you know what tools are available to us to monitor risk of metastasis or distant recurrence after treatment? Annual mammogram will only monitor our breast. It seems mostly patient here has mentioned it was discover by patients once they have symptoms. Diagnosis tests are plenty but that is a bit late to the game.

Would love to know what we can do test or otherwise to monitor the risk beside simply wishing for the best.

Run into an older lady during my chemo today who had metastasis to several places after 14 yrs. also met patients have it back without any symptoms only discovered when having an different health issue checked up.

1. Is annual blood test for tumor marker beneficial?

2. More studies showing longer hormone therapy provide benefit, 10 yrs even 20 yrs have been studied. But 5 Yr is still standard care. Citing SE from hormone therapy. Besides 2ndary cancer, the rest of SE is less concerning than recurrence.

3 annual MRI or CT or X-ray or bone scanWill need be weighted against additional radiation exposure?

Please share your perspectives and thoughts.

NVDobie - I'm just beginning to wrap my head around the whole 'what happens after'. I think the risks of too much scanning outweigh the benefits but at the same time, I have to say I'm not finding tons of studies on this, and the studies I did see are older, when possibly the scans weren't as good, and when stage IV treatments weren't as sophisticated. I suspect that we will see new data on this due to the much more aggressive scanning that some patients in the US undergo.

I keep holding on to the concrete things WE can do. This 2017 study analyzed research on lifestyle choices to prevent recurrence. Exercise reduces recurrence by a up to a whopping 40%. http://www.cmaj.ca/content/189/7/E268

"

• Physical activity can reduce breast cancer mortality by about 40%23 and has the most powerful effect of any lifestyle factor on breast cancer outcomes.22
• At least 150 minutes per week of physical activity is recommended

So my take away is we need to take our doggies for many many walks & hikes

Hugz4u, moth

Thanks so much for your posts. Here are the sites I found to share with you all.

Everyone else please continue to Chime in.

To have our future surveillance in the hands of ourselves and our GP or MO are protocol I guess. but we all know Doc are humans some are better human than others. Mistake happens, neglects happen.

So hope we have each other to beef up our surveillance knowledge and stay ahead like moth said,

Full CBC should be easy but not sure there is much there besides CRP for inflammation, CTC tumor marker test probably not covered neither is Vitamin D. I tested my V-D after diagnosis after reading about it. I had 22 where the normal range starts 75. Further readings found out the latest Health Canada upper limit is 4000 IU a day, so I am taking 2000, but have run into patients who takes 3000 and 4000.

https://qap.sdsu.edu/education/bcrl/Bcrl_followup/bcrl_followup_index.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881221/

Also found a cancer care private clinics founded by a naturalpathic Doc (oncology) in Port Moody. Need to be her patient before test can be done. 300 for initial consult, 600 per test. Good business.

http://www.portmoodyhealth.com/cancer-centre/cancer-testing/circulating-tumor-cells-ctcs-cancer-biomarker-testing/

Moth

100% agreed on the life style. 5k walk a day is my routine now, go up to 8-10 if I am up for it. also thinking changing to Vegan diet after chemo phase. I tried out 3 moths before chemo it actually made me feel better with my long term tummy issues. Eating some organic bone soup and chicken soup since chemo to help with nutrition and protein. But may ask you for advice inthe future.

Talk soon. Ladies

Thank you for the links and all the input here.

My oncologist only followed me for 2 years after treatment but said to call if I had concerns. I think you have to trust your GP or have one who trusts you and will follow up with your concerns. I see a NP at the cancer agency and she has called the oncologist to ask his opinion on things but basically she listens and will do scans if I am having a problem. It is essential to have someone who listens to you.

I was really worried for the first while but then found that I kind of had the underlying belief that if they thought I was ok I must be ok. Also having a couple of "I bet my cancer is back" freak outs that turned out to be normal medical things I am starting to wait longer before freaking. I know I can't say that the longer out you are the safer you are since we all know that isn't true.

I have been following a whole foods plant based diet for the last month. Well I am off meat and dairy but still have eggs and salmon (baby steps) but I believe my immune system was shot from sustained stress over a long period of time and I ran out of fight and got sick. So I don't believe one thing will keep me safe from recurrence. I believe exercise and nutrition make a difference but obsessing about it would be stressful for me. The more I try to do what I can do without it being a pain in the butt the more likely I am to stick with it and just 'live' a normal life for however long it will be.

I do believe that cancer in a younger person (under 60?) is a different game. When you get to a certain age you know something is going to take you out. I thought mine would be heart attack or stroke because I am overweight and sedentary so when I was diagnosed I thought "Oh. that's interesting. It's going to be cancer". It was a natural thing to happen at 66 or older. For younger people it is just not fair and I would be really resentful to the universe.