That one thing you wish you’d known before surgery that you found out later

BTmom

New to the group, just diagnosed this past week with IDC after biopsy (not staged yet)and includes lymph node. What is something you wish you had known prior to surgery …either to be prepared for post surgery and treatment or to have made a better informed decision prior to surgery. You’ve heard “ you don’t know what you don’t know” and people that have already gone through any type of surgery or treatment look back at the things they weren’t prepared for or told about beforehand…just curious if you have something to share…

nikkis2ns

I have been reading that many people complain they have no taste or everything taste salty during their chemo I experienced this exact things what I found that I could eat that helped to numb my mouth and allowed me to get some nutrition later was popsicles good old good old popsicles make them out so numb in such a short period of time with the cold that you can quickly sit down some soups or whatever that are only warm and in between take another couple of bites of popsicle I hope this helps all of you I've been there and I'm about to go through a second round after 17 years of my first cancer

nikkis2ns

Truckincrazy1

I was probably too upset to understand the biopsy report results and I understand medical terminology which is a plus sometimes. My tumor was in situ, meaning it was in the original spot and did not spread, no lymph node involvement and margins clear, grade 3, stage one. Invasive scared me, I did 20 treatments of radiation, I refused chemo. I am 4 weeks post treatment and still have extreme fatigue. My legs hurt, I cry all of the time. Other people have told me 20 treatments is a lot. I wonder if I should have not done the radiation. On the other hand would I worry that the cancer would come back if I didn't? It still could. I just wish I had been more prepared for this extreme fatigue, it scared me so bad, I was hysterical on the phone with The Cancer Society, calling referrals, found this group.. My advice? Learn all you can and ask as many questions as you can. Be informed.

catlady2

My skin was so raw after radiation. I thought it was my body's reaction to the treatment. It was partly that but also I had an allergic reaction to the creams they told me to use. My skin was red, covered with bumps and itched like crazy. Wish I would have said something to my care team sooner. I ended up taking a course of steroid pills to finally get me skin to heal.

Truckincrazy1

https://csn.cancer.org/discussion/comment/1699025#Comment_1699025

I started to blister and the itching drove me insane, I wasn't using the cream correctly during radiation, brain fog I guess. However, I spoke to the nurse and she recommended Aquaphor, it relieved the itching, beware, its a thick Vaseline type ointment and it built up in my bra. Neosporin also has a ointment with pain reliever in it as well. Take care of your skin it is fragile. I only was in Aveeno, a oatmeal shower gel. I got it under control, it took some time and work.

catlady2

https://csn.cancer.org/discussion/comment/1699021#Comment_1699021

Are you sure it was diagnosed as Stage 1? I thought DCIS (ductal carcinoma in situ) was Stage 0. That is what I was told...

Truckincrazy1

https://csn.cancer.org/discussion/comment/1699043#Comment_1699043

That's what the doctor told me. Margins clear, no lymph node involvement.

SunshineRainbows22

https://csn.cancer.org/discussion/325512/that-one-thing-you-wish-you-d-known-before-surgery-that-you-found-out-later

I went through 16 rounds of chemo to shrink my tumor before I had surgery and then had a lumpectomy with onco plastic surgery. Because the amount of tissue being taken out was significant my breast surgeon suggested I also meet with a plastic surgeon. I didn’t realize in order to balance out what was being done on my left side, I would need surgery on the right for symmetry. It was hard to take in at first. But my plastic surgeon was helpful in explaining everything and answering my questions. I followed up with insurance to understand coverage and send in the details to the plastic surgeon’s office. I had both surgeries at the same time- a lumpectomy with onco plastic surgery and breast reduction. It’s been about four weeks. In a couple more weeks I’ll start radiation.

ldebauch55

I'm new here. 2 hours ago found out I have ICD Moderately differentiated (11/111).Mom and sister had same. Both had lumpectomy.radiation and chemo. My daughter is an RN and suggest mastectomy and chemo .I can't remember if it's in my lymph nodes and can I deny chemo if I find it's not in my lymph notes? My daughter explained alot and I can't seem to remember anything. Any suggestions greatly appreciated. Any questions I should ask Oncologist? Oh,I'm HER 2 Positive ( score 3+)?

ldebauch55

ldebauch55

https://csn.cancer.org/discussion/comment/1699393#Comment_1699393

Nodes*

Truckincrazy1

https://csn.cancer.org/discussion/comment/1699394#Comment_1699394

https://csn.cancer.org/discussion/comment/1699393#Comment_1699393

I don't know what differentiated means, the doctor didn't mention it. I had a lumpectomy, radiation only. You can deny any kind of treatment you want. I refused chemo, the medical oncologist wasn't happy about it but to bad, its' my body I am in charge of it. I'm tripe negative, no hormones will help. No lymph node involvement, margins clear, tumor was in situ, means it did not spread from where it originated. Why would you want a mastectomy as in complete removal of the breast? A lumpectomy is a partial mastectomy. I would write down all of your questions and their answers. What stage is cancer if known, has it spread, is it in lymph nodes, I took my daughter with me. Have you had a biopsy yet? The doctors will know more after that. My tumor was found on a PET scan and there were no other hot spots that indicated cancer. My breast surgeon told me chemo to shrink the tumor before surgery, radiation and chemo afterwards, she was confident she could get all of the cancer with the removal of the tumor. I turned down chemo. Reconstruction is not an option for me since I still smoke. Trust me 20 treatments of rads was no walk in the park either. I don't want to scare you. Just do you do. I talked with friends, family and to myself to decide on what was the best for me. This is your life, your body. Only you have to live with it the rest of your life. Do what your gut tells you. Many hugs! Terri

ldebauch55

Truckincrazy1. Thank you so much for your response. You've helped me with putting things in perspective. I will ask these questions and I will make a list as I think of more. Stay well🙏

Truckincrazy1

https://csn.cancer.org/discussion/comment/1699399#Comment_1699399

You are more then welcome. To be honest I didn't know if I should answer you. Then I remembered back in March of this year when I went for a PET scan for a nodule on my lung the doctors were like, hey great, lung is fine but guess what we found? The bottom of my world fell out from underneath me. I was terrified, I have cried gallons of tears. I researched, joined FB groups, many I left as they scared me. DR google, spoke to doctors, friends, Cancer Society, therapists and more google. I am now cancer free and I am glad I made the decisions I made. I am so happy that I can now help someone. I know exactly what you are going through. Please do NOT LET FAMILY OR DOCTORS or anyone tell you what you should do. I'm a wimp and I do let people boss me around, not this time. This is something you have to live with and only you, I can't stress that enough. Prayers for strength to you.

ldebauch55

Thank you . You've helped me more than you know. I am feeling confident now and will do what I feel is best for me. I am going to get through this and in the meantime,I'm staying positive. Stay well❤️

SunshineRainbows22

https://csn.cancer.org/discussion/comment/1699381#Comment_1699381

*Update- even though we tried to be proactive in understanding insurance, I just discovered part of the coverage for my surgery was denied. So this part of the process didn’t go as smooth as I hoped. I’ll have more to figure out on this front…

Sunny5

https://csn.cancer.org/discussion/325512/that-one-thing-you-wish-you-d-known-before-surgery-that-you-found-out-later

One thing I had after surgery, and I don't know if this is everyone or not. After about three or four weeks my incision had not closed and started draining. It scared me because I thought it was infected. I got hold of my cancer dr. and he said it was normal, and not to worry, just let the surgery dept. keep a watch on it. He said if it did not smell it was okay. It took a long time to completely close, but the drainage slowed an stopped, finally. I just wore a gauze pad in my bra. My surgeon told me to stick a Qtip in there and twirl it around to keep it open because they wanted to get all that fluid out. I thought he was kidding! He wasn't. So I did that until it wouldn't go very far in, even thought he thought of it made me sick. LOL It didn't hurt, surprisingly. But I had no idea that would happen.

lovedwife

https://csn.cancer.org/discussion/325512/that-one-thing-you-wish-you-d-known-before-surgery-that-you-found-out-later

I had a left side radical mastectomy with the removal of 10 lymph nodes. One big thing that I wish I'd really known before was just how bad lymphedema can get later when node's have been removed

Sunny5

https://csn.cancer.org/discussion/comment/1699393#Comment_1699393

Ask for a cancer book, such as The Breast Cancer Treatment Book by Judy C. Kneece. It has LOTS of information about all kinds of breast cancers. Also ask questions. Your oncologist will want to answer them and don't wait about asking if something concerns you. Make sure they tell you all about chemo vs no chemo, mastectomy vs lumpectomy, etc. Prayers and best wishes!

ldebauch55

Sunny5

Thank you for your response. I will do just that. It's so difficult to remember things. I started a list. It's quite long. I hope my questions get answered in one appointment. I hope that someone will go with me.

Stay well🌿🙏🌿🙏