Posted by Scared on Sep 5, 2019 9:43 am
Questions are: do I just get surgery asap and deal with reconstruction decisions later or wait for consult with plastic surgeon to arrange having it done at same time as mastectomy? (Which means I wait for late surgery date)
do I need second opinion? They rushed me through with tests and met with oncologist and navigator nurse and surgeon within 2 days.
The more consults and appointments I make means more delay in getting this cancer out of me.
I wake up every day shaking. I need to calm down. It's so hard
is anyone out there relating to this?
Posted by Buffythevampire on Sep 5, 2019 10:59 am
If you choose to delay the reconstruction part and just have to mastectomy are you going to be able to cope seeing yourself flat? I know lots can but I wasn't prepared for that. I am not sure whether it's more difficult to stretch the skin if you wait to have the reconstruction or more painful.
Before too long you will get some more help/advise from the other members of this group. Good luck.
Posted by Scared on Sep 5, 2019 12:13 pm
that's just it...I dont know how I'll feel being flat on one side but I'm worried about the delay and also the chemo treatments. It looks like you've been going through this a long time. I'm just shaking every day and some say once I've made decision or have got this cancer out of me that I'll be at least be a little more calm going forward.
I heard reconstruction has more risks with drainage tubes etc plus healing site from wherever they take it from my body
I'm leaving now for appointment with surgeon and I'll need to tell him what my choice is and probably get a surgery date. On good side, they told me from tests done so far there's no sign of it in lymph nodes.
bone scan is tomorrow. So as long as it's clear we go ahead with surgery.
thank you so much for reply amd I look forward to anything more you can share.
Posted by Wendy Tea on Sep 5, 2019 12:26 pm
My oncologist said I have a beautiful scar. Who knew? My scar healed nicely, I still have some tenderness in the muscle above the top of the breast. Because I am not in a relationship I was not overly concerned about my look. I also feel that a loving partner would be supportive regardless of what my external body looks like.
Decisions are difficult because usually you are so shocked at the diagnosis, common sense and the ability to focus disappear.
Take your time. From my mammogram to my surgery was two months.
Wishing you all the best.
Posted by Lianne_adminCCS on Sep 5, 2019 4:46 pm
This is not a decision I had to make as I had a lumpectomy but I can relate to the desire to get the surgery over with and "get it out of there"
You may have already had your appointment but I wanted to give you a link to some information on recon surgery from cancer.ca that may be helpful for you
You will see more information on the left hand list on all things breast cancer and breast cancer surgery.
I hope you are able to reach a decision that you can have peace with.
Let us know how your appointment goes
Posted by Buffythevampire on Sep 5, 2019 8:13 pm
I am currently 53 and my plastic surgeon said that the implant side would probably have to be replaced only once more in my life time. Once I recover from my last chemo I will go and see my plastic surgeon and give him an update. Mine did not spread into the lymph nodes so that meant that I didn't need radiation. Yeah!
And as for chemo treatments, be careful with what you read and where. I think there is a lot of horror stories online. Not saying that it's not tough as it can be but there is lots of advances too. My Dr. treated me aggressively but she said I did really well with the side effects. I even worked during most of it.
And if you want to reply to someone specifically put an @ symbol first, start typing the name and a list will appear and you pick the correct one.
Posted by Scared on Sep 5, 2019 8:25 pm
Today my husband and I went to our appointment with the surgeon expecting to get a date for the mastectomy and after another examination, he convinced us to go to the other side of the hospital and speak to the oncologist regarding chemotherapy in order to shrink the cancer first. That way he could more easily remove the cancer that's within this mass and recovery would be easier. So now I have an appointment to go to a chemo class to find out what's involved. The doctor thinks chemo could shrink the tumour enough so that he wouldn't have to remove the whole breast...just the middle. Then the reconstruction would be minimal.
I feel so confused. Chemo would take months and months. Plus, the surgeon said if I choose to go that root, he wants to implant a marker next to the cancer to monitor it as I get treatments and when it's small enough we could do the surgery. I asked if he would put me out for that and he said 'no it'll be just like the biopsy'. Well the biopsy was extremely painful!! I'm still bruised! and that was 2 weeks ago!
The oncologist says in some cases the cancer even disappears ! really?? is that even possible??
the thing is; my lymph nodes appear clear according to mammogram and ultrasound and they're saying that this cancer isn't aggressive. But, do I want to wait for 6 months of chemotherapy...getting sick....loosing hair....back and forth in waiting rooms with sick people. week after week??
Plus, once they...IF...they manage to shrink this thing, I have to wait a week for chemo to leave my body and then wait a month before surgery so that my immune system has time to build itself up in order to heal after the surgery. So now this is dragging on till it's almost a year before I see an end to this.
I guess I'm just overwhelmed from being jerked around at the hospital today. The surgeon sent me to see oncologist and we waited an hour after being escorted to a room then were walking out and I saw the oncologist and she said we were not supposed to meet her...just get some appointments for chemo class and my first treatment. I haven't even decided if I'm going to do that yet. So as it stands, we're going next Thursday to a class to learn more about and then will make my decision. ugh!!! I just want this over!!!
Posted by Sunshine74 on Sep 5, 2019 9:38 pm
I totally get everything you're saying! I was diagnosed August 15, and am still working my way through multiple appointments and scans. Still waiting for more results to see if it's spread and though my mind is doing a bit better, I'm still terrified of the results. I want to know, but I also don't. This thing has kicked my butt mentally in a way I never thought possible. I have learned a lot from the kind people here and they have a lot of good advice and it's nice to hear from someone who's been there and truly gets it. My surgeon has put through my surgery request to remove my left breast, as I have 2 cancerous lumps. I don't know if I will do reconstruction down th road, but I chose not to do it at the same time. Partly because I just want the bad parts out, partly because with would mean travelling to a city 2 hours away for the surgery as we don't have plastics in my town, and partly because I feel like I will be ok being flat on one side. Maybe I will change my mind down the road and I can still do it then if I decide I want to. I have a lot of faith in my medical team and they've been nothing short of amazing, though I wish there was less waiting for results. I'm sorry that didn't really address your questions, but just wanted to let you know that I get it. Good luck to you! 😊
Posted by Wendy Tea on Sep 5, 2019 10:15 pm
My thought process was, I have family history, I don't want to get another tumour in this breast, if I remove the breast the chance of anything going sideways is greatly reduced.
Everyone needs to make their own decision and having a partner to discuss it with is ideal. Try not to panic. You have time to calm down, investigate, talk to lots of people and make a wise decision.
Stay in touch.
Posted by ontariomom on Sep 6, 2019 1:40 pm
Posted by Scared on Sep 6, 2019 7:06 pm
Hi Buffy, thanks so much for your insight. It's really helping to hear of your experience. My next question is about the chemo.
I'm impatient due to my anxiety about all of this so even though I'm scheduled to attend a class (next Thursday) to get more information about it, I would like to know your experience with chemotherapy. Did you have any side affects after the first treatment? Do you feel generally sick all the time or just right after treatments? Did you lose all your hair too? Just wondering how you felt after each treatment. How bad was it? What did you mean you were treated aggressively?
I even asked what would happen if after a few treatments I decided to quit and opt for the total mastectomy anyways. The oncologist rolled her eyes and said of course that would be my decision but I'd have to wait at least a month for surgery anyways until my body is strong enough to heal from surgery (which made sense to me). I only asked this because I was led to believe that it's possible to shrink somewhat even after a couple of treatments and if it shrinks just enough, then my surgery wouldn't be as severe as a total mastectomy. I just hate the thought of this dragging on. My son is getting married early November and if I'm going through chemo I don't want to be sick at his wedding or miss it altogether. Of course, I could just go to the ceremony and then get someone to take me home before reception. ugh! why does this have to happen??
This really does help to hear someone else's experience. thanks again.
Posted by ashcon on Sep 6, 2019 9:23 pm
Lot's of great words form so many so far. Just want to add a couple of things..
1/ Chemo is not as bad as the movies make it out to be, for the most part. Everyone responds differently but for many it's like having the perpetual flu. As soon as you feel yourself starting to get your energy, appetite, and spirits back, you know you get to go in for another round, and it'll knock you down again. I, too, had a dose-dense aggressive treatment, which meant a chemo treatment every 2 weeks.
You may find some tips and insights in the discussion, Let's Talk Chemo.
2/ The doctors will recommend the best course of action to get rid of this cancer from the get-go. My treatment plan was only supposed to be a lumpectomy then radiation, and I was hoping to be back at work within 8-10 weeks. But after the lumpectomy, the diagnosis came out worse than originally thought, and I ended up having lumpectomy, chemo, then double mastectomy, then radiation. A lot more than I expected, but to be "no evidence of disease" now for the last 15 months was worth it.
3/ Congratulations on your son's upcoming wedding! I understand your desire to not let cancer derail your plans. Good news: You can continue to live your life, even while in treatment, if you are able to manage your symptoms, eat healthy, keep up the exercise, etc. The doctors are great (actually fabulous) at adjusting doses, providing meds to counteract any severe side effects, etc.
There is one member on this site who still proceeded with her wedding day, despite it being smack-dab in the middle of her fiancee's chemo treatments. He had to sit down after the service, and through the party afterwards, but they got through the day!
I heard of another woman who wintered down in Florida, and only flew back for her chemo treatments.
Just sharing this so that you will know this disease doesn't define you, or what you can - or cannot do. Continue to live your life. Go through the treatments that the doctors recommend so that you can enjoy a long and luscious life after your treatments are done.
Wendy Tea - great explanation about what it means to get clean margins!
Posted by Scared on Sep 7, 2019 9:30 am
maybe my fear is not allowing me to accept what your saying about chemo being not so bad, but what I'm hearing is...you went through all that and in the end had mastectomy anyways. My thought is it's not in my lymph nodes right now and it's right smack under nipple which can't be saved anyway so why not avoid all the back and forth and just go for mastectomy?
I dont want the pain of surgeon putting some foreign object inside me to mark where cancer is just so he can monitor it as I go through chemo. My breast hurts daily now because it's in the surrounding tissue .
I'm sorry to be so negative. Thus has just consumed my life right now.
I have to say that sharing stories and feelings with everyone helps me to cope.
I just know that once I've made a decision I'll hopefully stop shaking so much every day.
Posted by Sew On on Sep 7, 2019 9:38 am
one more thing to go through which will to me represent Closure to Cancer and moving forward with life.
Posted by Kims1961 on Sep 7, 2019 9:52 am
Like the others have said, we have been there - it will get better. When I would get stressed/anxious - I would try deep calming breaths or yoga or walks outside. Something to distract myself to give my brain a break.
The good news is that you are a candidate for surgery/treatment and thus are on the curative route. There are so many options for support during treatment - it wasn't nearly as terrible as I had thought. I found it helpful to write down any questions I had in a journal so i was prepared when i saw my medical team. Also noting how you are feeling can help.
We are here!! I hope today is a better day. Let us know how you're doing. Kim
Posted by JustJan on Sep 7, 2019 10:30 am
Like everyone here, I can relate to the anxiey your are experiencing. The decisions around cancer treatment can be overwhelming. It sounds like you need some more information before you can make a decision. I think you said you are meeting with the surgeon again. I would create a list of specific questions so that you can get more clarity on the reasoning for the treatment they are recommending. The medical team want to give you the best chance of beating the disease, unfortunately some are better at relaying that information than others. I was absolutely petrified of chemo and in fact declined when first offered for my breast cancer. I literally had a meltdown in the oncologists office. I was diagnosed later with ovarian cancer as well a month later and ended up having to do chemo anyway. I can tell you it is not nearly as bad as I imagined, but it will affect you. By changing my mindset to "I need to do this to get well" instead of fearing it I have been able to manage to power through. Your health care team will help you manage the side effects to make it as easy on you as possible.
Everyone's journey is different and the treatment options vary. You need to make sure you have all the information so that you can make the right decision for YOU. Once you have your plan finalized, your anxiety will lessen.
Wishing you all the best as you move through your treatment.
Posted by Scared on Sep 7, 2019 11:57 am
1.) I was 3 years late in getting a diagnosis because 1st hospital that did biopsy never generated a pathology report at all. Our health system failed me. Its a long story but if I had known then what I know now that small lump could've been removed. End of story.
2). My first meeting with surgeon led me to believe that mastectomy was best option for 'getting it all' out as opposed to treatment and doing a partial mastectomy. No matter what, I will need surgery of some kind.
3). My second meeting with surgeon tells me that chemo is recommended to reduce size and then do surgery. Then he sends me over to talk to chemo oncologist. Feels like my 'health team' were not on the same page at some point and now are pushing the chemo.
Has anyone opted for a second opinion by going to a different hospital and different surgeon for advice? And, if I want a second opinion do I need to go through all those tests and biopsy again at their own facitlities or would they consider the diagnosis that I have in hand. They gave me a copy of it.
Posted by Buffythevampire on Sep 7, 2019 1:36 pm
Chemo seemed to affect me in my stomach area. I got either constipation or diarrhea, very little pain, salty taste in the mouth (chemo affects your taste buds), sore throat and a few other side effects. I was never nauseous or vomited. I actually gained about 15 lbs. I did lose my hair and chose to shave my head to end the mess. How you handle chemo might be totally different though.
I am not sure what the Doctor meant when she said she was treating me aggressively. I will have to clarify the next time that I see her.
Posted by ontariomom on Sep 7, 2019 4:06 pm
Posted by Cynthia Mac on Sep 8, 2019 9:09 am
Thanks, ontariomom , for sharing the information about bestdoctors.com — I knew I had read it recently but couldn’t remember the details.
Scared, your point number 1 about the hospital that did the first biopsy not generating a pathology report is a cautionary tale. The days of “no news is good news” are over and we now have to be diligent about following-up with just about every test we’ll experience. I’m so sorry this happened to you. How did you eventually find out that that the first biopsy showed an issue?
Buffythevampire , my Dad has had some issues with constipation, too, and he gained weight on his first 4 rounds of chemo. He’s on Cisplatin and Pemetrexed for a recurrence of lung cancer. Different drugs will cause different reactions with different people, and age will be a factor, too - Dad’ll be 80 soon.
As ashcon Said, it’s not uncommon to find that a treatment plan changes as patients go through them. When Dad’s surgeon recommended chemo in January, after telling us he got everything in December, I was more than a little shocked. When Dad went through the chemo, I was a nervous wreck — for nothing. Dad managed his symptoms well, and, after getting through the first day, I was able to sit with him during his treatments.
I don’t know enough about your case to tell you what to do with regard to making a decision about chemo, but I will share with you my harsh reality: My 80 yo dad has a rare, aggressive form of lung cancer. If he had not taken that first round of chemo in early 2018, (it was offered to him as an option, due to his age), there’s every chance he would be gone now. Here’s why: 1. He’s had a recurrence, with metastasis (now stage 4). 2. If he hadn’t taken those first 4 rounds of chemo, he wouldn’t have been monitored as closely as he was which means 3. His recurrence (this past July) would have likely happened sooner, and either he would not have had the last year with us, or he would have been at end stage of life now, instead of soldiering through another round of treatment.
If nothing else, I hope that sharing my story has raised more questions for you to take forward to your doctors. Again, I wish you all the best with your decision.
Posted by Scared on Sep 8, 2019 4:24 pm
hi there, the first hospital had the images from the tests on a CD which I picked up and took to second hospital when I went for current tests. There was no pathology report done on them but the doctor who did my last biopsy saw the pics and even though he tried to hide it, I knew he was not happy that it was 3 years ago since the first one and he rushed everything going forward.
Now I'm planning on looking for a referral to another hospital with a bigger cancer care centre in it because I'm not happy with the oncologist assigned to me. I'm stressed enough without having to deal with this person's attitude problem. Aside from this message I'm taking today off. I'll think about it tomorrow.
Posted by WestCoastSailor on Sep 8, 2019 10:44 pm
I got tagged into this discussion because I used the phrase "tumour board" not because I too have breast cancer though I have. Yes men can get it too. And yes 120 men in Canada are expected to die from it this year.
So first I want to say that as I read through the thread to get a sense of what is going on it took me back to when my male breast cancer was diagnosed. Things whirled around me. I had a bone scan, CT scan the same day. I learned the joy of "stat" in things being requested.
I had gone in by myself to get the biopsy results and got the news. I went out to the parking lot, called my brother and cried. He was a ten year survivor of male breast cancer and I needed his reassurance. Our mother had died of breast cancer when I was seventeen years old. There is clearly a genetic link to it all but nothing that has surfaced yet in any genetic testing.
The wrinkle for me was that the CT scan discovered a large mass in my chest which when biopsied turned out another primary cancer.
The tumour board in our local cancer clinic was convened to discuss my treatment plan. Breast cancer is very survivable - 88% of women survive to ten years. Lung cancer not so much - 17% to five years. One of the side effects of my initial chemo treatment for lung cancer was that the tumour in my right breast shrank to half the size while the one in my left chest shrunk to the point where the doctor couldn't palpate it any more. I had simultaneous radiation for the lung cancer. Six weeks after that I had bilateral radical mastectomies to remove both breasts and sentinel nodes on each side.
It was probably a lot easier for me to decide to go flat though my surgeon did offer reconstruction.
The board was reconvened to discuss radiation when one of the sentinel nodes was discovered to have cancer cells in it. It was determined that it was more important to leave room in my future treatment plan for further radiation to the lung cancer than to do prophylactic radiation for something that probably wasn't there. Though ultimately the choice was up to me. I chose to follow their recommendation.
The tumour board as I understand it is a group of specialist oncologists that meet to discuss difficult or challenging cases. I'm in BC being treated in Surrey Cancer Center so it could just be a function of this particular clinic. Who is actually part of it or how it is convened I don't know.
I"m going to tag ACH2015 into this conversation as I believe he has experience in Ontario with a tumour board there.
Stay in touch.
Posted by ACH2015 on Sep 9, 2019 7:19 am
First let me say I have cancer, not breast, but I do understand the process.
I read through this thread, and like all of us, you have lots to consider.
If you are wanting reconstruction, the process from what I've read can involve many different surgeries. If your treatment plan includes chemo,then surgical removal of the cancer and is followed up by radiation, likely reconstruction won't happen until you and your body have healed sufficiently for reconstruction.
Scared , If I put myself in your shoes, I'd ask your oncologist about the standard of care for your situation.
What are the potential treatments involved in your situation. This can help you understand the whole process, reconstruction included, and give you a better sense of process and time frame. This unfortunately is a process, and waiting is never easy, but my way of dealing with all this was to understand the whole process first, and make decisions based on all information available.
Posted by Survived99 on Sep 9, 2019 9:37 am
Posted by Notdeadyet on Sep 9, 2019 12:21 pm