Coping with a Breast Cancer Diagnosis and Upcoming Surgery

Remember to get more than 1 consult. Also there are some doctors who do nerve preservation and repair which can help keep sensation and help prevent post mastectomy pain syndrome. Don't be forced into surgery fast....surgery 2 weeks from diagnosis is awfully fast....have you really researched and learned what your options are? In most cases...it's not an emergency....within 30 days is a responsible time frame. You can reschedule or call and say I need a couple weeks. It's your body. I felt rushed and I took 6 weeks,mine was small. I wish I would have know about nerve preservation.

Keep in mind that there are a number of new treatments that have helped women live longer lives. Once you have a plan you will be able to focus on the plan. See if your surgeon can send off your tumor for oncotype dx score so it is not delayed to see if you will need chemo. Take a deep breath and stay with reputable sites on the internet.

I was also self diagnosed. I have no idea of the time frame, date begun or completed, all was arranged between doctor who I have no memory of discussing the cancer or surgery with. I cannot stand being in the same room or even the the same building with my husband of 50 years. I feel abused and very betrayed. I don’t believe I will ever trust him or a doctor again.

Karenann, I have mBC, but my sister was in a similar situation. They found 2 more tumors after a breast MRI. So she had a double mastectomy with nipple conserving surgery . Her surgeon was going to reconstruction right away, but changed her mind during surgery and put in expanders. Honestly, her experience was awful Because the pain meds made her violently sick. My other sister was taking care of her and didn't contact her doc immediately to change the pain meds which she should have done. But, I know you can do this! BC is very scary. Call you PCP or a psychiatrist and get some meds for anxiety, it will help you think more clearly and relieve some anxiety. Prayers coming your way.

Thank you very much. I will continue to try to better deal with this I do need to find a psychologist. I was not successful in a psychologist when I’ve searched before. Life must get better.

Karenann, what you feel now is normal: dispair, guilt, denial, everything that makes you living in a roller coaster; you said there was biopsy done; you should ask if there is a chance of doing lumpectomy on the affected breast only; you have to ask why double mastectomy; If this is the only solution for your case, then think if it is very important for you a reconstruction of your breasts; is about how you feel about; each way you’ll choose it has to be your decision; I have friends with double mastectomy for 20 years and they feel great, without any reconstruction; The main focus now is not this, is about what stage you are, what’s the best treatment for you..,then the rest I will pray for you! Just breathe and write down the questions you have

Thank you all, I have consulted with a few doctors, I also work with a group of specialists. My choices are limited in the surgical aspect. I was told by multiple doctors that the lumpectomy is not an option, my tumor is too large, and they will have to remove too much breast tissue. I had an MRI today, so we'll see if my other breast and lymphnodes are infected as well. I'm okay with this decision. I'll be alive.. but I have to remember.. we are warriors and will get through this. It's just extremely overwhelming.. I am opting for reconstruction as well, I'm meeting a plastic surgeon this week.. so hopefully, I'll feel whole again sooner than later and be able to say I survived.

Is it possible to have reconstruction 6 months post surgery.

I had a large tumor as well but my surgeon and oncologist both decided to shrink it first with AI for 4-6 months until it is small enough for surgery and attempt breast preservation followed by radiation.

Karenann, please know that the worry before surgery is usually way worse than the actual surgery. You’ve got this!!

Karenann Sorry to hear you are going thru this. I understand the confusion, anger and uncertainty that this brings. Even though I was a nurse, this was not my specialty. I tried my best to look at quality, credible sites online to at least try to understand some of it and to figure out my questions. ( mayo, Cleveland clinic,etc). I ended up getting a bilateral mastectomy. It was a good decision for me. I did have reconstructive surgery several months later. It’s been 7 years now. I don’t think any of us are able to put it completely behind us but I can now live a full life and enjoy each day - (most of the time) without the anxiety that instantly filled our world with the dx. Good luck to you with your upcoming treatments. Saying prayers for a speedy recovery. ❤️‍🩹

I know exactly how you feel. There is so much to go through. It’s overwhelming. I kept a pad and pen near me and as my concerns and questions came up I wrote them down… because I was so freaked out it was impossible to remember everything. … then I realized I was my own best advocate.. so I wound contact my doctor with my notes and asked.. ask ask ask. Everyone’s situation is different. What others did or didn’t do may not be your choice. Breathe. God Bless.. Diane

Do you have invasive ductal carcinoma or lobular carcinoma? Both breast or just one? It is important to know!!!

I had a mammogram in January, 2023 and breast cancer found in one breast, had biopsy in March, IDC, and May had lumpectomy. One of the margins on that was not clear, and surgeon and oncologist said to have another lumpectomy and I said no, I want a double mastectomy. Had that in July, 2023. When labs came back they found lobular cancer in other breast. Surgery was not bad at all, I opted for no reconstruction because I had to wait so long and I just wanted to get done with it. I am 75 now. Didn't have to have chemo or radiation.

Melinda sounds like you made right choice. Glad it went well. Did you have an MRI? Wondering if your ILC would have been seen .

I did have MRI, but I don't think it picked up the lobular cancer. It was many months before mastectomy. I live in Las Vegas, we need more doctors and other services!

That’s really scary. I know there can be false negatives.

Karenann, take a deep breath and calm yourself down. Learning to do that will save you a lot of energy you need in the future. You need to be able to trust your care team, be honest with them about what your feeling (emotional as well as physical) and get through this. I'm just starting this journey for a second time (HER2 the first time, other breast now, est+ this time). I was fine emotionally the first time, this time I asked for help because my emotions (RAGE) were out of control! Trust your team, ask for what you need, tell them what you are troubled by so they can help. They know how. Best wishes💕

I only had a small itch on my left breast. I was planning a trip to Costa Rica and while getting shots, asked the PA to examine. He didn’t note a lump but encouraged me to get a mammogram. After a CT and MRI, I was diagnosed in ER+PR HER2 neg stage 3. I am now getting AC/T and just finished my second chemo today. So far no side effects. I plan to get a double mastectomy (going flat) in July followed by radiation. I am not living in fear. I know that it could go to stage 4, the chemo could reduce the large spiculated tumor and shrink the affected lymph nodes, or anything could happen. What I know is that today is a good day. I choose to be happy. I am redoing my trust and downsizing (getting rid of a lot of stuff I don’t need), not because I expect the worst but because it is responsible and it feels right.

Hi Patricia why double mastectomy? Glad today is a good day.

Karenann. since I was dissatisfied with the first referral to see a surgical oncologist my primary care physician did submit. I scheduled another appointment with my primary care physician assistant to refer me to a different surgical oncologist for a second opinion. I was very satisfied with her. I asked her what my options were lumpectomy or mastectomy. I had decided on lumpectomy surgery on April 30, 2024. My tumor was sent for Oncotype DX. My score was 30, 15% absolute to chemotherary. Sending prayers, live, hugs to you🙏

I’m so sorry, I feel the exact same way. My double mastectomy is next Monday and I’m also losing my nipples. I told my mom I feel like I’m on an island. I don’t know anyone who has gone through this. I had a friend who broke her ankle a while back and she was bedridden for months. I tried to help her when I could. A year later, I broke mine and was in bed for 6 weeks unable to lower my ankle below my heart without severe pain. I immediately called my friend and apologized profusely because I had no idea until that moment. My friend is now coming to some of my appointments with me, but we are again, in two different worlds. It’s the hardest part for me. My husband is trying so hard for me. He’s the best, but it isn’t the same as walking in my shoes, and he and my dear friend, can’t relate. That’s why I joined this site. I still look for people who have my same diagnosis, same surgery, same age, etc, just to feel like I’m not alone. Karenann, you are not alone.

There are some additional sites that you can talk to others with your exact diagnosis. MyBCTeam is one, for example. I found it very helpful to connect with others that had the type/ stage cancer that I had.

The best decision I made when I got breast cancer was to get in a faith based support group. I’m still in it over 10 years later. Yes other cancer sufferers know what it feels like to be told you have cancer. Especially when you don’t feel like your doctors have had your back a support group can pray & support you.

I had my surgery last Friday. I gotta say, I feel great.. yes, there's pain and all, but my overall well-being is great. Everyone around me is telling me how amazing I'm doing and how great I look.. that's nice that I look great, I feel like i look awful. My expanders look deflated, and my scars are dark purple.. it's hideous. But I'm looking at them as my battle wounds. I really don't care how it looks at this point, I'm just happy to be here alive. This whole process stinks. None of us should have to feel like this. Now because my surgeon feels I'm not healing properly, I need a hyperbaric oxygen chamber. I'm not liking that at all but I'll do it if it helps me get back to me.