My Story - Finishing Treatment And Feeling Isolated

Jillian123 · November 2014

First, I want to say thank you. I have been lurking on these boards since my biopsy and they have been wonderful and supportive and informative.

Second, I am sorry that the only reason I decided to finally get on here is to complain.

I was diagnosed a week before my 39^th birthday last year with triple positive 2cm combined ILC and IDC. I had an FNA done on an enlarged lymph node and it was determined that the cancer had not spread to my lymph nodes. Perjeta had just been approved prior to my diagnosis and I began a 16 week course of neoadjuvant chemotherapy – 12 weeks of taxol/perjecta/herceptin and then 4 cycles of adriamycin/cytoxan.

I don't want to break my arm patting myself on the back, but during this time frame I was basically awesome. I turned 39 by sharing the news of my diagnosis and my treatment plan with everyone. I was determined to maintain my healthy diet and remain in good shape and take care of my kids who were then 8 and 9. I didn't shed a tear when I shaved my head, I showed up full of energy and vivacity at charity events where my "journey" was featured. When other people gave me "cancer face" or got upset or even cried, I hugged them and consoled them. My husband and I worked out all of estate planning and funeral planning. While he cried at the funeral home, I rubbed his back and assured him this was all just precautionary so we could put this behind us when the treatment was over. I was full of strength. I ran every day and lifted weights. Two weeks after chemotherapy was done, I ran a 5K. I was ready for my lumpectomy and looking forward to a warm summer of radiation and hair growth. At no time did it occur to me that breast cancer would be anything other than a passing challenge. I calculated I would be "cancer free" in a year.

And then I had surgery and received the pathology report. Unexpected axillary dissection and my tumor showed zero pathologic response to treatment and remained at a grade 3, 100% cellularity. My husband is a physician and we have received excellent treatment at an academic institution and I do not question the course of treatment, but I have to say, all those months of chemo and targeted therapy for…nothing? That was a blow.

And then we turned to summer. Radiation. 33 treatments, an hour round trip, half the time dragging my kids with me. By the end, my chest was peeling off and looking like a cadaver, my hair had barely grown back and I had given up on even trying to garner the energy to go for a run or eat properly. Frankly, I started to look like a prisoner of war. At our post-radiation visit, the visit I believed would allow me to put all of this behind me, finally, I asked my oncologist for her thoughts on recurrence. She gave me a Recurrent Cancer Burden of 3 using the MD Anderson Model (the highest) and a 40% chance of recurrence. The earlier the recurrence, the more likely it is that the cancer has metastasized.

I've had several months to let this all sink in. My hair has grown back and now looks intentional. I am back at the gym. I went on a vacation and actually have a little bit of a tan. In short, I look just like my old self. But in the last few months, a part of me has died. I have had a hysterectomy and ovary removal, I am taking the tamoxifen like a good girl and continuing with Herceptin infusions until the end of January. Everyone else has clapped their hands and told me congratulations, you beat cancer! If I become sad, they tell me to cheer up, you beat cancer! If I express worry about the future, my supporters brush me off and say, oh! Take it day by day! Everything will be fine! My husband, who I'm sure is exhausted after a year of taking care of me, tells me that I can't look at the negative, only the positive. My son and daughter give me a hug every time they see a pink ribbon and say, that's you, Mommy! How can I tell those sweet babies that Pinktober makes me want to vomit?

So, here I am. When I was supposed to be upset, I wasn't, and now that I shouldn't be upset, I am. I feel like I have created a monster of positivity with my initial attitude and now I feel totally isolated. I have tried support groups, but I have not found anyone who has had a similar diagnosis, course of treatment, or failure to respond to therapy. I think I just need someone to say I understand why you are afraid and sad. It's ok. Or maybe, I understand that you are not "cured." Maybe some wise words about how I can spend the next year or so of my life trying to forget that there's a large chance the cancer will come back. I am wondering where that breast cancer hero that I used to be has gone. I need her back.

Thank you all for listening to me. You are a wonderful group of women and I appreciate any thoughts.

grammakathy · November 2014

So many of us here "get it". I don't have the same diagnosis that you do I but understand what you are saying. At first, we are in "survival mode" and moving from one appointment to the next, doing what we need to do. Then the treatment ends, and everyone believes we are cured and cancer free. They didn't hear the MO say that no one knows whether cancer cells have escaped and are already circulating throughout our bodies. I am so sorry that you are having to go through this. I hope it helps that you will receive notes from a lot of people who understand, even though none of us have exactly the same cancer. I try to take it one day at a time and find joy in the things I can do, and not wait for tomorrow. Hugs to you Jillian.

SelenaWolf · November 2014

Time. It's so cliché to say so, but that's the key. Time. It takes time to digest everything that's happened and wrap your head around it. I always felt that it took me a year to physically get through treatment; it took me another year to deal with all the emotional fall-out. While I was very prepared for the physical toll cancer would take; I was not prepared for the emotional toll and how much it would affect me, OR how long it would take for my mind to shut-the-f**k-up and quit scaring me.

I'm three years and a bit out now and I think I've finally made peace with it. But, oh, the rollercoaster ride getting here.

Jillian123 · November 2014

Thank you both. Sometimes it just means more for me to hear the same words from someone who knows what I'm talking about. If you say "time," I will believe time. I feel like I'm supposed to be "doing" something to work my way out of this rut. It's like a really bad breakup - there's not much you can do but let time pass and regain a sense of yourself.

mdg · November 2014

I get it too! I felt like I should win an academy award for "best performance as a healthy person" while I was going through treatment. Once the treatment is over, everyone thinks you are cured and forgets about it. We are left with the aftermath though. It is hard to move forward with everything when there are reminders all the time of what you went through. My worst moment was the first October after my treatment and all....when someone asked me if I wanted to donate money for breast cancer my response was "no thanks...I already donated my breasts". OMG! The look on the poor girl's face! I can't believe that came out of my mouth, but I could not help it.

I am now almost 4 years out from my dx and things are different. Yes, there are daily reminders of things with BC, but it is not so consuming. With time, it gets easier. I found it helpful to have friendships with those that went through treatment around the same time I did. We all lean on each other. Some days I just have a bad day and get angry about BC and I can always talk to my BC buddies. They do the same when they need support. I also think that for me anti anxiety medication has helped. I went on Effexor after my treatment and I feel it helps me just not think about things as much as I normally would. That may be an option for some people and some may not want to take medication. I never wanted to take medications before BC, but now if it makes it easier for me to live well, I am all about the medication! If all else fails, maybe talk to a counselor to help you work through the feelings and fears you have. I think many of us are so caught up in treatment and when it's all over we are left with PTSD. I don't think you just get done with treatment and move on. There has been a lot of damage done with the words "I am sorry, you have cancer" and all that comes with it.

Just know you are not alone. Your feelings are normal for most of us girls around here! Also know with time, it DOES get easier. Hang in there...hugs!!!

Jillian123 · November 2014

Thank you, MDG! And seriously, I said the same thing to the poor salesgirl at ULTA when she asked me for a donation! Thank you for sharing your story, it makes me feel less mean. I told her I had already donated my hair and my reproductive organs. Super Breast Cancer Hero Jillian would have never said that, but Post Treatment Crochety Jillian has no qualms about it. I am on effexor and I have made an appointment with my psychiatrist for next week. I was on prozac for anxiety and depression before breast cancer treatment and it was switched to effexor when I began the tamoxifen because of drug interactions. I don't know if the effexor needs to be modified and/or if I need some psychotherapy, but I am feeling something has to give. I am almost incapacitated sometimes by grief and hopelessness.

mdg · November 2014

OMG...LOL! I said it to a girl at ULTA too!!! Too strange.... I bet they have some interesting things to talk about in their staff meetings in October!!!

mdg · November 2014

Have you connected with any other survivors that you can chat with? That may help. My BC buddies got me through this and continue to get me through rough days

SpecialK · November 2014

I was much like you - strong, determined, supporting and comforting those around me who were frightened by my diagnosis, including my husband's family of mostly doctors and nurses. I had lost my mom, my dad (stage IV lung cancer), and my brother (stage IV bile duct cancer) already, and I was intent on not joining them. I intended to learn as much as possible, have the best treatment I could, get through the other side, and go on living my life - my armor dented, but still intact. I felt that it was incumbent upon me to show my college-aged children how to get through a life challenge with strength, reassure my husband that I was up to this, and could maintain my responsibilities so that he could maintain his, and that we would emerge from this and then move forward. I think that this mindset can often backfire because we are so intent on presenting a strong façade that we are not fully processing what is happening, and it allows us no room for retreat and human frailty because that feels like failure. It is important to understand that maintaining perfection in the face of this kind of trial is exhausting and will sap the energy you need to reach a state of acceptance of your situation, and to find a road out that will allow you to experience happiness again and live your life fully.

I think one of the biggest problems with the pinkification of breast cancer is that those around us do not understand that we never "beat" cancer, and see us looking fairly normal and do not understand that we struggle to find a way to move forward with the knowledge that we will never be sure of a cancer-free future. It is a great disservice to us and an additional hurdle to overcome, when we already have many. I was fortunate to participate in a quantified research study on post-treatment stress reduction. In this study I was able to more fully examine, beyond understanding it on an intellectual level, that I can't change the past, can't control the future, can only live in the moment, and can only control my own responses to all of that. It is certainly easier to say than to do, but practice has allowed me to appreciate the moment instead of dwelling on what happened, or being frustrated at the unknown aspect of the future. I have cultivated healthy eating, exercise, a frequently positive mindset, a lack of patience for the negative, a release of things that waste my time, as a way to move forward and live as fully as I can in the moment, with an eye on the future, but no guarantees.

It may help you to think about the possibility that your continued Herceptin infusions and hormonal therapy are adjuvent to chemo and surgery, and I assume not part of the recurrence model based on neoadjuvent treatment, and so providing continued benefit. Those of us who had surgery first will never know if we received benefit from chemo, we have to have blind faith. Triple positives are thought to get the most benefit from the continuing targeted therapy and hormonal therapy.

The "tincture of time" will help you as you come to terms with the uncertainty of your new life, but coming here and sharing your ups and downs will as well - we all understand. I think you need to release the "hero" you used to be, and become a new one - forged by your experience, one that is more forgiving of yourself, one that is proud of what you have survived, one that realizes even though sometimes sad and scared, can still be happy living one day at a time. I wish you the best.

YoungTurkNYC · November 2014

Jillian,

I just wanted to say that I understand and relate to everything you just said. I am so sorry that it is so hard to get over these feelings. I am experiencing the same difficulty. I try to reinforce all the positives to myself every single day, and to tell myself how so fortunate I am in so many ways, and try to focus on TODAY. Also, it helps to distract oneself, whether with focusing on the kids, on the job, on the upcoming holidays etc. etc.. Anything to take our minds off of thinking about cancer. It takes effort to focus on other things, but it helps.

Jillian123 · November 2014

Thank you all for your responses - MDG, those poor ULTA girls! Hahaha. I have tried support groups but I find that I do more explaining about my diagnosis and treatment plan than I would like (because it seems many woman do not have neoadjuvant chemotherapy and the HER2 status throws another wrench in the mix.) I like these boards because there seems to be at least a general understanding of the different types and experiences for breast cancer survivors. SpecialK, very eloquently said and I strive for the same intentional living you practice. The continued Herceptin administration is part of my original plan, yes, and not based on the recurrence model. However, because the cancer actually spread during my neoadjuvant therapy (surprise!), I don't believe the continued cycle is doing any good. (This is the part where I have to remind myself I am not an oncologist and hope for the best.) YoungTurk, you are so right. I've tried so hard to focus on the positive in my life and on my beautiful kids and I've been so successful for so long. I don't understand why things seem to be spiraling now. I have been out of my routine the past few weeks, so hopefully a few days back into my regular schedule will set me straight as well. Thank you all for understanding. I can't tell you how much I just needed to hear from other people who GET IT today.

sandiesau · November 2014

Hi Jillian We all know exactly what you are feeling. Myself... I'm so damn tired of people telling me I should be thankful that I'm cancer free and to just quit worrying about it. What they just don't understand is we as breast cancer survivors know there is no such thing as being cancer free .I was also one of the tough ones while going through treatment and you do have to think positively about your future. All we can do is try to live as healthy a life style as possible and I find that exercise and meditation{deep breathing and concentrating on relaxing every part of your body} helps a lot. I just had my 2 year mammogram done and now I'm back to being a worrywart while I'm waiting for results. Trust us when we tell you that time really does help. Thinking about you Sandi

Rmanmom · November 2014

Hi Jillian, I am also an infrequent poster who totally gets it. I was practically the poster child for neoadjuvent THC chemo. I was at the gym every day, I worked full time (from home but I never missed a beat), I cooked, cleaned, attended all of my son's school and sports events and I was the one telling everyone else it would be fine. Two weeks after chemo I went on a ski trip. I put on a happy face and just kept moving forward. Once my husband said that he had no idea what I was thinking anymore and the truth was that I didn't think at all, as others have said, I was in survival mode because if I stopped to think about the enormity of it all I would fall apart and I couldn't do that. Then its over and your left wondering what just happened and if/when will it happen again. Also as SpecialK and others have said, with time you will feel better. I am now two years out and finally beginning to really feel like myself again. I am thinking about you as well. Oh and that is just too funny about the ULTA girls! That made my day!

rozem · November 2014

Jillian no one can tell you how to feel, until they have walked a mile in our shoes they have no idea (and I hope they never do). What you are describing is normal - its all about the phases of grief, anger, fear and finally moving on. The moving on doesn't happen overnight, as others have said TIME is how it happens. We all have our "breakdown" moments. I was the opposite of you...I was a mess during treatment then felt better mentally when the last bit of chemo finally left my body. But that's me, we are all different and if this is your time, your way then everyone needs to move over and let you feel they way you need to feel. You will get there, on your own time

like SpecialK said you still have adjuvant treatment - don't underestimate the power of Tamox. I would ask about going on an AI now that your ovaries are out as I believe there is a % advantage over tamox.

Jillian123 · November 2014

You all have completely turned my day around with your compassion and reassurance. Thank you every one of you for responding - honestly, sincerely, and from the bottom of my heart, thank you.These were the words I needed to hear.

Girlstrong · November 2014

Jillian , your post has struck a cord with many. Like you I had neoadjuvant chemo, was HER2, went through rads, surgeries etc. Having cancer changes a person. For me, in the beginning, time stood still. It was as though I was in a horrific nightmare with no way to awaken but I pushed to get through treatment. I ate well, exercised almost daily and everyone always said "you look so good". Little did they know my internal struggle and all the tears I shed when no one was watching. I've gotten stronger...much stronger. Anyone who embarks on this journey has to be strong in order to survive. You ARE strong. The fact that your now feeling more "shaken" is human. Your still comprehending your situation. Please don't focus on the residual cancer burden. It us Just a number. Like others have said, it does not take into account targeted therapies. Since your triple positive, You have many medicines available to you so please keep that in mind. This is a long road that doesn't end when chemo does; Well meaning people on the outside don't always realize this. The mental part of healing is huge. I'm glad your seeing your doc soon. Sending you hugs....

Tinkerbells · November 2014

Thank you for posting this. It is very difficult for me to grasp what has happened to me in the past few months. I feel like I am the living personification of a silent scream. I am also her-2 +++, but since I had surgery first, have no way of knowing whether the chemo and treatments worked. Additionally, it was not recommended that I have rads as the benefit would only be 1%. I had no scans at diagnosis because my onc does not believe in them. So basically, I go forward with the treatments, and the thought is - let me know when you have symptoms of recurrence. This has caused me so much anxiety and sadness that I feel I am losing my mind at times. On an intellectual level, I get that the disease is what it is, and treatments may or may not work. I think it is the lack of control that is destroying my psyche the most. I suppose I am basically really angry that despite a clean life, this has happened to me. I understand your thoughts and concerns. I also hold it together for everyone and feel like a fraud - if they only knew how very scared I am, every minute of the day. I hope things turn around for both of us the farther out from active treatment we get.

Jillian123 · November 2014

Girlstrong, thank you for your comforting words of empathy and hope. Mscaruso I am sending you a virtual hug and praying we make it through this time - I just keep repeating: this too shall pass.

Thanks to you all, today I am forcing myself to follow my regular schedule of housework, gym, mass (my form of meditation), work, kids. I've "dropped out" the last few days/weeks. I need to at least try and go through the motions of normalcy. Get out of the house. Distract myself. Let time pass. Trust that it will get easier.

Jillian123 · November 2014

PS: Rozem,thank you for your note about the AIs - my onc is waiting for the presentation in San Antonio before changing practice models. I will be anxious to hear the outcome.

SpecialK · November 2014

I think it is important to have a moment, or moments, each day of pleasure and joy - whether it be appreciating something beautiful, enjoying a great cup of coffee, having a delicious chocolate - fully involving yourself in that experience. It may sound like a cliché, but stringing together those experiences can open your heart, calm your mind, and allow you to relax. Staying super busy sounds like a solution - or a distraction - but it can be a technique of avoidance. I think we need to allow ourselves to feel the fear and then try to figure out how to learn to live with it. I understand how hard it is when you are ruled by uneasiness about the future, but coming to the realization that control was always an illusion - nobody has it, including those without breast cancer, may be helpful.

RebzAmy · November 2014

I just Googled an article which I remembered reading after I finished treatment, written by a man called Dr Peter Harvey a Consultant Clinical Psychologist - it's entitled AFTER TREATMENT FINISHES - THEN WHAT? It's really worth a read. And I've cut and pasted the link below and I sometimes re-read it to pick me up when I'm finding things a bit difficult. I hope it helps you ladies too.

http://www.cancercounselling.org.uk/After%20the%20...

Anonymous · November 2014

I also had residual cancer after neoadjuvant treatment, although I did respond to treatment. Keep in mind that I started out in a much more serious situation, with many positive nodes. I've dealt with my high recurrence risk by going super aggressive on adjuvant therapy. Aside from the recommended radiation, I'm in a clinical trial and I've chosen OS+AI over Tamox (I'd remove my ovaries but I still want to have children). Were any clinical trials for adjuvant therapy offered to you? Unfortunately many require you to enroll within 12 weeks of surgery, but there may still be some possibilities. I know there are some vaccine trials that have gotten good results, although I don't think any are currently enrolling although it's something to look into for the future. I know you said you received care at a major academic institution, but maybe look into making a trip to one of the big cancer centers like Sloan, MDA, DF, etc and seeing if you can meet someone who specializes in Her2+ cancer. Also second (or third?) the recommendation to look into switching over to an AI. All my doctors remind me that endocrine therapy is powerful at reducing recurrence. It SUCKS to be in the "high risk" group and I have no advice on how to deal with it emotionally, as I'm still grappling with that myself. But taking practical steps to seek out the most aggressive treatment/best professional opinions possible helps me feel more in control of my destiny.

Jillian123 · November 2014

Thank you ladies! RebzAmy, thank you so much for that link. That was a wonderful article. It's nice to hear the process verbalized and maybe even reframed with words like "convalescence." I appreciate it!

rozem · November 2014

Jillian - I have an appointment with my onc on Dec 15 to discuss the trail results - I will put this thread on my favs and report back

Moderators · November 2014

Jillian123-

We wanted to thank you for sharing your story here. Your story is exactly why this community is so important, because cancer can be so isolating, and you are far from alone. You all need a place to vent and talk about your lives before, during, and after cancer, warts and all, and we hope these boards fulfill that need. Thank you again!

The Mods

Jaimieh · November 2014

Jillian I think it is almost a bit of PTSD that survivors deal with. While going thru treatment we are fighting and once we are done with active treatment we feel left alone all of a sudden. Others move on and don't think about it or are reminded of it daily and there is no escaping it for us.

I just wanted to let you know you are not alone. ((Hugs))

formydaughter · November 2014

I completely understand and feel the fatigue, worry and depression. I'm in maintenance Herceptin infusions and recently started taking Tamoxifen. The combo definitely makes me feel lower than before Tamoxifen. I'm now a lot more tired and have bad headaches. It's all I can do driving my daughter t/fr school and dance. Otherwise, I'm crawling back in bed or sometimes trying to work on my computer from there. You can forget about making dinner! Although I love cooking, I'm too tired. There are other postings on here talking about increased depression with Tamoxifen - it could be a factor for you. I was already on Celexa (cancer anxiety) and Neurontin (post surgery fire bra and chemo induced neuropathy) before starting Tamoxifen, so I can't imagine how bad it would be without that! But at this point - coming up a year on my bilateral mastectomy, I feel like I should be better. Having more time than while in initial crises mode leaves more time for the "what ifs." I was not able to complete chemo - we tried 3 regimens but all were too toxic for me, each landing me in the hospital. Now I wonder whether it was enough. Whether Herceptin and Tamoxifen is enough and how I will tolerate tamoxifen for 5-10yrs...but what happens if I don't. I'm a single mom of a 9 yr. old daughter and keep reminding myself of her to get through. I've found that yoga and walking outside helps. Yet I too feel isolated and that my family and supporters are tired of it, tired of helping me,and ready for me to be well. My Ob/gym expressed concern for my mental health this week and wants me to start dating so I don't feel so alone. He means really well, but I feel so remote from being attractive or interested! My onco said a good thing that helped - it took me awhile to get this sick (even if caused by the surgeries and treatments)...so it will take awhile for me to feel better. It helps me to be less hard on myself now. It is completely understandable that depression would set in with you now, when you are out of the initial adrenalin mode that carried you through the worst of the beginning. If you are like most women, you put others before yourself and put on a brave face for your family. Don't be too hard on yourself. The emotional piece comes after the physical (I'm still partially in denial) and you are doing great. Those who have been through it keep telling me that with time it gets easier, but right now I'm living for my next Ativan... And making Xmas cookies, and snuggling my girl, and moments of genuine laughter amidst the overarching depression and fear. But faking it til you make it gets tiring and taking time for yourself to process things, mourn your former self and accept your current reality, and put yourself first for a change are things that you deserve, and need to heal. I hope this helps a little. I sure don't have it solved for me, but please know you are not alone and I think you are doing great.

Mrygolds13 · November 2014

I have your same story. I could just cry that someone else is experiencing chemo and Herceptin failure. I too felt totally isolated...Reoccurrence lump found one week after chemo was done.

More surgery. 15 of 30 lymph nodes involved . On herceptin arimadex. How are you? So glad I can talk to you.

Jillian123 · November 2014

For My Daughter: (((hugs)))). I have a nine year old daughter too. I'm thinking of you. Thank you for sharing. Mrygolds: I am doing better. I started beta blockers last week because I'm experiencing some cardiac strain due to Herceptin and I actually think they are having a pleasant side effect of curbing my anxiety. Please share your feelings any time! It's just good to know others can relate.

Bippy625 · November 2014

thanks you Jillian & everyone. I started off this journey in the same way with a brave face what I thought was a strong heart and a commitment to fully healing. I was not going to let any feelings of fear anxiety or disappointment get in my way.and that worked out pretty good for me for the first three months or so. Now, after having just completed my final chemo, starting to face the reality. My life is changed forever, in in two weeks I am going to be having both my breasts removed. I won't know for sure how well my therapy has worked until surgery. Although the tumors have shrunk on palpitation, who knows? I do have some lymph node involvement which scares that the beJesus out of me.

I do know though that there was a point about two months ago when I finally stop pretending to be strong, and quit faking a positive front to make others comfortable. It was such a release for me not to have to pretend, and use up my valuable energy for that instead of healing. I try as much as possible not to spiral, only because I know it will make me feel worse in the end and serve no purpose. And I'm not successful in stopping it sometimes. I'm trying to develop healthy coping mechanisms such as exercise, eating right, yoga meditation etc. truly I didn't realize what a good actor I was until my former boss exclaimed how wonderful I looked during a visit. For some reason his comment pissed me off so much!

Tinkerbells · November 2014

Yesterday I found out a mom in my daughter's class died of BC. The news was hard to take considering my mood to begin with. I will attend the services with my DD. I am going to try to confront my fears. It has not been easy. On the other hand, the funeral the next day is that of a 17 year old who died in a car crash. To me, it is a reminder that things can always be worse, and despite what has happened to me, I have been so blessed in my life. Just struggling this week and trying to find a way out.

My Story - Finishing Treatment And Feeling Isolated

Comments

Categories