Good prognosis, but am struggling emotionally

For me, I wake up every morning after sleeping, during which I can forget I have this thing..and then it hits me like a ton of bricks not long after my eyes open. Just like you said, bjquilter.

"I HAVE CANCER."

That's something you can't go back from.

I think I saw an article on this site about how this gives us PTSD, just to have it. Just the diagnosis

I'm so glad I found this site and forum! I really have felt so alone with this.

I am a Stage 1A with no lymph nodes involved at all. I had a double mastectomy in May of this year and was told I am "cancer-free" now. I had no trouble at all with the mastectomy physically but boy, the emotional aspect is something I never thought about. I am on Arimidex for at least 5 years and I have occasional hot flashes and night sweats, have gained weight, and have been dealing with some of the other side effects.

I didn't have reconstruction surgery and really never even considered it. I'm already 70 and just didn't feel like I wanted to bother with it. After my surgery, I joined a support group but found that they were all dealing with Stage III or IV BC, so I couldn't identify with them and they couldn't identify with me. I felt so guilty because I wasn't doing chemo or radiation. So then I joined the support group from the hospital and same thing happened so I quit that one, too.

My husband and kids are very supportive and I also have great neighborhood and church friends who are supportive. But at the end of the day, they just don't know how I feel. Sometimes I feel like it's all I ever talk about. I am on Zoloft and probably always will be. I never ever had emotional issues like this before. I know one of the Arimidex side effects is depression and sadness and so I try to blame the pills.

I'm trying really hard to stay upbeat and positive but it's so hard. None of my tops fit right anymore unless I wear the mastectomy bras, which I hate. The silicone inserts are so heavy and hot, so even though my insurance will pay for 9 a year, I just don't want them. Camisoles are also too hot (we live in Florida) so most of the time, I just wear shirts with nothing underneath.

I know I'm new to this and I'm hoping that as time passes, I'll be able to let it go and concentrate on living my life as fully as I can. My onc tells me that's what I have to do but it's really hard. Since my tumor was about the size of a pencil eraser, they won't do any tests. That scares me a lot because I keep thinking of the "what if's" and I just can't seem to let it go.

So the bottom line is that you are definitely not alone! It's so nice to have you all out there and know that you feel the same way I do. Every morning I wake up thinking man, that was a really horrible bad dream. And then I remember and I hate it. My dad died at 95 of natural causes and my mom died at 104 of natural causes. So what the heck happened to me?? My brother died of breast cancer 3 years ago but they said his was from Agent Orange when he was in Vietnam.

Okay, enough complaining from me! I'm so glad I found you

Thank you. I already feel better, knowing that I can easily find support from everyone here on BCO.

To answer your question, I see my oncologist every 3-4 months. He is young (I'm 70) but really seems to know exactly what to say to make me feel better. He's very compassionate and never ever makes me feel rushed. I go to the UF/Orlando Health Cancer Center here in Florida and they strive to make their patients comfortable. He said they would prefer to spend 40-60 minutes with a patient instead of the patient having to message or call them with questions, etc. So I usually see him from between 40-50 minutes and the same for my surgeon.

I am going flat by choice because I don't like the prosthetic bras or the camisoles. I am going to have scar revision surgery in a few months to smooth out some of the lumps and maybe that will help. I have one under my arm that is very uncomfortable so I think the surgery will make me feel better.

I've had DCIS and then a number of years later, IDC, Stage 1. Treatment didn't bother me much the first time. I did feel a bit like I didn't really have cancer, and this was partly because of some comments made by some of the medical staff at the clinic I used at the time. Some called DCIS precancer. The oncologist seemed quite uninterested in me and my situation because it was 'only' DCIS. It may have been only DCIS to him, but it was a big deal to me.

I also have had comments from people implying that because I didn't have chemo, I didn't really have cancer. This is so annoying. Sometimes I manage to smile and say, "Oh, you must be quite healthy! I hope you never find out about cancer first hand!" And then I get away from them as soon as I can.

Before attending a retreat for women with breast cancer, I was nervous that I would be unwelcome. That isn't what happened. It hasn't seemed to matter what kind of cancer, what stage of cancer, what treatment we've gone through - we have been able to feel less alone by getting to know each other. Almost all of us share certain experiences that have to do with treatment (mammos, biopsies, surgeries, medication, etc.) & the feelings of loss, grief, fear - we share these too, no matter what our diagnosis is.

I don't automatically feel grateful for being diagnosed early. I have to work on my attitude so I don't let depression take over. I had years when I didn't think about breast cancer much at all, and I never thought about dying. But I do think about it now. I'm older, the treatment has affected me much more, my mother has stage 4 bc, etc. One of the few positive things is that having cancer has motivated me to get all my affairs in order, which is something I should have done anyway.

Before my first diagnosis, I knew nothing about cancer or cancer treatment. I think that contributed to my feeling uncomfortable about having 'only' DCIS. I was unaware of all the ramifications of having cancer and having cancer treatment. I thought I had done it wrong - I didn't have any big AHA! moments, I was upset when I should be grateful, blah blah blah. Being able to read what people post here has helped me a lot.

Blinkie - you said so much of exactly what I have been feeling. I only was diagnosed this past March and then had a bilateral mastectomy on May 3rd. They told me that my tumor was the size of a small pencil eraser and was Stage 1A. The oncologist and surgeon both have repeatedly told me that I just don't have cancer anymore. The worst part is that because of the low stage and the fact that no lymph nodes were involved, insurance won't pay for an Oncotype Test or MRI, PET scan, etc. So here I sit, just wondering and waiting. Will it pop up somewhere else? My mother lived to be a very healthy 104 and never even took vitamins! She was one tough old bird! My brother died from breast cancer 4 years ago but that was linked to Agent Orange from Vietnam. His BRAC tests were negative.

I have been fortunate because my best friend's son is the Chief of Staff of Hematology Oncology at Dana Farber in Boston. So he hooked me up with one of the surgeons in the DF Women's Cancer Center, and she gave me the name of a surgeon at UF Orlando. He is rated one of the best in the country and I absolutely love him. My oncologist is also there with him and he's wonderful. I am 70 and he is probably about 35, but he always treats me like I'm his only patient. My whole team there has been fabulous. I don't know where you live, but I hope you can connect with doctors that you like and who respect you.

Everyone says I am so lucky because I didn't need chemo or radiation. I am just on Arimidex to lower my estrogen and Fosomax for bones. Lucky? I don't think they realize that cancer is cancer, no matter how little or big it is. It's big to us. I thank God every day that I am alive and feel great but that doesn't take away the fear. My surgeon says I most likely won't die from cancer and I sure hope he's right.

I had trouble connecting with the women in the two support groups I tried because I felt so out of place. And I was afraid they would resent me because they were all Stage III or IV and were doing all kinds of treatments that I know nothing about. So I stopped going to them. My husband said he thought they were making me more depressed than I already was!

I've had to go out and buy new shirts so that I can go without the big silicone mastectomy bras. I hate those things. The only reason Ihave them is because the insurance pays for them! I tried Jockey and Coobies but I just hate the fact that I have to put them over my head to put them on. Isn't that stupid??? For some reason, that just feels degrading to me. Don't have any idea why. So this weekend I went to the Loft Outlet near my daughter's house in Massachusetts and bought 5 camisoles that are 95% cotton. All the ones here in Florida where I live were about 58% cotton and the rest Spandex. So they were very hot. Plus I still have residual tissue under one arm and everything annoys that spot. I will be having surgery to get rid of that but it won't be until sometime after January.

Okay, I'm done ranting. Time to get something done in this house! We just flew back to Florida last night and the house is a mess! Thanks for listening!

Bluepearl, I think you nailed it with the PTSD. Tomorrow I go for tests to see if anyone can figure out what this new and large lump is in my other breast. I am so (frantic? terrified? angry? betrayed? resigned to death?) that it's almost like I'm in denial. Like my mind cannot go back to that bad, bad, desolate place of debilitating panic and despair. It literally is PTSD when you have to deal with this. You got hit with enemy fire once and you're still wondering if that shrapnel is going to kill you when you get hit again! For Pete's sake!

(this lump, which came out of nowhere and is big enough to SEE, might turn out to be 'nothing' but going back into the fear and waiting and tests and more waiting and then the decision making after... the effect is still too much for my brittle brain)

Runor - I can't imagine how you are feeling right now, and my heart goes out to you. Maybe it's a cyst, and nothing more. And I hope that they will/can tell you something tomorrow. The waiting is sheer hell, as we all know.You will be in my prayers. Make sure you post when you find out.

I think I feel even more guilty after reading this thread, because I can’t say I’ve had any feelings of depression, although I can’t say I ever have been really depressed. I actually think the hardest thing for me has been the hair, and I finally ditched the wig today. I’m really pissed at myself because I had missed three mammo appointments, and thought it was just one. It’s not like I didn’t know better.

My radiologist is a close friend, and I told him when the BS wanted an MRI before surgery “so he knew what he was dealing with.” He warned me that the MRIs have a high rate of false positives, and he was right. I was leaning towards a BMX anyway, due to my age and family history, but the thought of going thru that every 6 or 12 months decided me pretty quickly.

I’ve really had an easy time of it. I don’t know if I have a high threshold for pain or what, but my BMX and exchange surgery were pretty uneventful. I stayed one night in the hospital with the BMX, and the exchange surgery was outpatient. I don’t think I would have had to miss much work during chemo, but I work for my husband and took advantage of it, so I probably ended up working an average of 20 hours a week. I guess I feel more guilty about being on Medicare and not paying anything for all of this than anything else, although that’s just the luck of the draw.

I have a 35 year old niece that’s a single mother that is triple positive that had no-adjuvant chemo before a BMX, and just had her DIEP exchange two days ago. Maybe I’m more calm about all of this because my mother had radical mastectomies and radiation at 58 and 64, but died of COPD at 84.

Runor, you must be so fed up by now. I hope you get good results on Monday. The waiting game is the most awful, in my opinion. Sometimes I think that the doctors, pathologists, etc. really don't understand how awful it is to have test results looming over your head, especially when it's a weekend. My tests always seemed to be on Fridays, an I hated that.

I am on Arimidex and I do have hot flashes and night sweats, but they are fairly manageable and I don't have them as often as I did when I was going through menopause. I have had herniated disks in my back several times and have nerve damage in one leg, so I already had leg cramps long before cancer showed up in my breast. So I honestly don't know if it's the Arimidex or the nerve damage that causes my occasional leg cramps.

I have absolutely no "survivor's guilt". No one should have it, as others said, but a key reason in my case is that I have had chronic pain and complex autoimmune problems for over a decade and I have had to deal with not just painful rare diseases, but also rare side effects from attempted treatment of the diseases. So my first reaction to BC diagnosis was "here we go again, more health and illness crap, can I not just get a break?" I have a sense that a "good" breast cancer and its treatment is not going to turn out good for me even if it is good statistically, ( especially regarding pain), no matter how much organic food and supplements, exercize etc. I take, so I am being very, very careful in what I will consent to. I see healthy 85-year-olds out here in health-conscious CA going cruising and doing 10 mile hikes on their new knee and hip replacements, and though I am happy they are doing well, I ask why I , 20 years younger, could not be like them, and have been ill since around 50?

I am now 63 and the last couple years was just coming to an equilibrium on managing my chronic multifactorial pain, e.g., full-time rewarding work with my allowed accomodations, enough money to travel, able to financially consider retirement when my husband wants to, and had been hoping I might have (lliving with pain notwithstanding) , a good remaining ten years of life before landing up dying with severe dementia in a nursing home, as seems to be the trend with so many these days. I am worried my chronic pain is just going to get worse and worse with BC therapy ( statistically I have high risk for side effects, with my autoimmune and other problems) and I worry I will lose all the ground I gained on pain management, and it will further stress DH too, who has endured all my trials and tribulations.

So no, I have no "guilt", I have paid my dues in suffering from illness, and now I have to pay again, and I am just tired of it. I almost did not even do the lumpectomy because of the risk of chronic pain exacerbation, and because there is a trend by controlling government and medical organizations anyway in older women to do less and less, so it could be medically justified, e.g., with my low grade tumor type and the idea that something else will kill me first.

I know it could be worse, e.g., I could be a young woman with kids and stage IV, and there are also many people with all kinds of diseases who suffer more than I do and have less options, including young veterans whose bodies and minds have been seriously damaged from war and PTSD and who never had a chance to even enjoy a couple of good decades of adult life as I was able to do before I got sick. To keep my worries in perspective, I think back to my eastern European parents telling me about the suffering they had, first under communist tyranny and then under fascism, and compared with what they went through, BC in any stage and my chronic pain is trivial and that oddly cheers me up.

It will take a while to get over the pity party related to this new hit, but I will never feel guilty about not having more severe initial staging, as BC will further diminish the quality of my future remaining life. Bad things happen to good people even when they try and take care of their health, e.g., no smoking, no drugs, exercise etc., there is no purpose to them, they just do, and we are fortunate to have opportunities for treatment and care that so many people in the world do not have. We need more research to make even more progress, and as I was raised to see the "glass is half-full and not half-empty" but be realistic when there are problems, I willkeep pushing ahead.

I felt - and still feel - exactly the same way. Just because I didn't have radiation or chemo doesn't mean that it was not cancer. And just because I bounced back so quickly after having a radical mastectomy doesn't make the whole thing any less painful. My surgeon and oncologist and their whole team have never made light of the cancer I had, But sometimes I feel like some friends and even some members ofmy family have that "okay you had cancer, but now you don't, so just move on with your life" attitude. I know it's hard to understand what it's like if you haven't ever had cancer, but I guess I didn't expect that, especially