Your mental health journey with cancer?

I commend your interest in looking into these issues with us.

For me, the initial phase of the diagnostic work-up and treatment was somewhat easy. I was occupied with learning the lingo, going to appointments, etc. The real let down came after six months when chemo was over, surgery well in the past and I had quite a while until I would be at the cancer center again. (Turns out, I got to go back earlier than expected due to lymphedema showing up!)

There are screening tools in place for assessment of distress/depression/anxiety but you have to be involved with clinic visits to encounter those options. I was able to access a support group which greatly helped my transition to a 'new normal' several years ago. Now with bone mets to worry about, I find that I have less in common with the average survivor. It seems like I need to educate many of them regarding situations they will probably never face...

From what I gather, the metro Milwaukee area seems to have a pretty good supply of practitioners. Madison is also a popular place to hang out a shingle - so many professionals train there and like it, they don't want to leave! This actually has the effect of keeping wages lower...

I would imagine that in more rural areas, specialists are harder to come by. I wonder whether long distance sessions are a possibility.

Before I retired from pharmacy work, we were hearing about plans for remote dispensing in locations where traditional drugstores could no longer afford to stay in business or staff could not be hired. In this model, medications (at least enough for the first few days) could be provided by a machine with counseling taking place over a TV monitor, then the remainder of the prescription is sent via a delivery service like UPS or FedEx.

For me, the beginning was the hardest. I started living in a haze from the day before my biopsy results were due until after my first appointment with the surgical oncologist. It wasn't actually that long, but it felt like forever. It would have been HUGELY helpful for me to have access to someone I could have called to explain my initial biopsy results. (I didn't know about the boards then). My biopsy results were textbook stage I, in retrospect, but I was convincing myself it would be stage IV and I should start making contingency plans for my funeral. That's why the first surgical oncology appointment was so important. And in the mean time, no one would talk to me. My gyn who had referred me for the mammogram didn't know anything much about breast cancer. My treatment hospital couldn't discuss any results until my first in-person appointment. It didn't occur to me to ask any doctor for short term anxiety help. It was pure crazy-making.

I'm a teacher myself and I think that a wonderful thing to do would be for cancer screening and treatment centers to employ educator advocates to check in with patients and supplement the time and information that the doctors are giving. If patients wanted, they could accompany to appointments, or else just be on call for meetings and phone calls.

The next hardest time was waiting after the surgery for the pathology and oncotype results.

I was completely mentally and emotionally exhausted by the time I started radiation. I could not do my job anymore mentally, even if I might have been able to do it physically at least part way into radiation. But none of my regular doctors would write me an FMLA note for radiation treatment! The surgeon said surgery was over, so she wouldn't do it. The MO said it was under the RO, so she wouldn't do it. And the RO had no context for my entire state and thought that many women are able to work at least part way through radiation so was reluctant to write it for me. Thank goodness my cancer center had a psychiatrist I could start seeing (though the internal referral process was pretty terrible) and he is very good. He wrote me the note. Not having to work during that time is probably what saved my mental health. He also supervised me coming off of my old antidepressant to one that is more compatible to tamoxifen, and is now supporting me dealing with some of the mental fog/sleep impacts of tamoxifen (as my body hopefully adjusts itself).

Since I took off work, my mental health has been fine. Going back to work was a bit nerve-wracking, but also turned out fine. But now the mental/sleep side effects of tamoxifen are wreaking havoc, and everyone at my work kind of expects me to be done and fine, and my stress about work is ramping up. I think that maybe medical teams aren't knowledgeable enough, or inquiring enough, about the different jobs that patients have and how their treatment may impact it. I think my experience would be *very* different if I had a quiet kind of desk job, and again it would be *very* different if I had a driving job where I couldn't afford to be tired at all. My job is in between, but requires a lot of mental and emotional stamina and alertness and after-hours work.

I am single and dealing with this on my own. At first I thought that would make it much harder but actually that's been mostly fine. My friends have been very supportive and my treatment has been relatively low impact enough, and being on my own can actually simplify my life and make it more peaceful. BUT it does mean that financially I have no one else to rely on, and even though my health insurance thank goodness is good, I absolutely must keep my job and also need to be really thoughtful about taking unpaid leave from my job.

Anyway, I hope that is helpful for you. I am guessing you're in an early information/anecdotal gathering stage? I'd love to hear more about your research as it evolves. There are also a lot of threads on here where you can get insight on people's journeys, including 'in the moment' descriptions instead of relying on future recall of past experiences.

The best help came from talking to others that had been through it. It really helped knowing others walked in my shoes and were doing fine. I got strength from them, they talked me off the cliff of uncertainity.

hello Belle!

Thanks for opening up this forum. And thank you for caring! I am a huge advocate for mental health and mental health services. I come from a family that believes in the therapeutic benefit of therapy and was introduced to it at a very early age and have continued to use it as a resource my whole life.

I am currently seeing a PsyD who knew nothing about my diagnosis (stage 4) although she was listed in the insurance directory as being an oncology psychologist. Well, it didn’t matter too much, her lack of experience in this realm, as we actually have been discovering the intricacies of this dis-ease together. And she has been an incredible support for me. I found her about 1-2 months after my diagnosis of stage 4 de novo, two years ago. Very grateful!!

I am incredibly lucky to live in a huge city that has multiple world-reknowned hospitals and my care is at one of them. They have an oncology social work center and at every appointment ask if I need to speak with a social worker. The head social worker comes in and visits me often at my appointments just to give a hug and say hello. She sometimes emails me with ideas and offerings: she started a young woman’s support group. I haven’t gone yet - but it has been on my calendar I am not sure yet if I am a “support group” person...sometimes it can cause more stress for me, since I am a caretaker-type person in life and in my career. So I may have difficulty NOT worrying about my sisters.

I also do see the oncology psychiatrists at my oncology center. It is amazing that my hospital has these folks too. I fought going on an antidepressant for a long time. I have now been on Lexapro for about 4-5 (?) months now and it seriously feels like a lifesaver.

I was in complete and utter shock at the time of my diagnosis. I was frozen with fear and crushing anxiety. I was in a fog. I think that once the fog started to lift, depression kicked in - I was feeling like I never wanted to get out of bed, Like I was in a fishbowl at social gatherings, was starting to have panic attacks, crying uncontrollably, and overall incredibly sad about my life in general. I believe the combo of the Aromatase Inhibitor, Lupron injection (which shut down my ovaries and any possibility of having children), and other medications plus having a strange looking nipple and rippled breast, and becoming more dependent on other people fully overwhelmed my psyche and neuroendocrine system and psychology and I just couldn’t handle it without medication. I am SO grateful for Lexapro and hope that it doesn’t stop working!!

I hope this information helps. Again, I feel very lucky to have an amazing support system in place - I am utilizing all of them!

All my best to you!

Hi!  I had my first breast cancer in 2003. 1cm IDC treated with lumpectomy, re-excision, chemo and radiation. I refused Tamoxifen.  I was so badly burned with radiation, jellybean size blisters on top, skin on bottom of breast sloughed off, that my medical oncologist put a stop to it at day 21 and wouldn't let me finish until the blisters healed. The radiation oncologist didn't seem to care about my pain or suffering. She would bark at me, "don't use any creams, we will tell you what to use and when to use it!"  They never told me to use anything! 

I had no medical support. There were no breast navigators back then and when I tried to see my PC, the receptionist wouldn't give me an appointment because she said I wasn't sick, even though I told her I had just been diagnosed with breast cance!. I had to pick doctors on my own from lists the hospital gave out. I don't remember there being a website back then, that rated doctors or made researching doctors easy.  I was left with a huge amount of anger which lasted for about 4-5 years.  One day I just decided that to save myself I had to let go of all that anger, and I did!  I didn't forget what happened to me, but I let go of the anger.  

After 10 years I was well into a routine of going for my mammogram, nothing being seen and going on my merry way. I was convinced that I would never get it again. 

15 1/2 years later, in the fall of 2018, I was seen by 3 different specialists and went through countless tests for things unrelated to breast cancer. I was finally at a point where those issues were stable and I had one last thing to check off the list, my mammogram, so I had that done. Long story short, because I had pain in my former BC breast they did an ultrasound too.  Nothing showed up on the mammogram but an area of suspicion showed up on my ultrasound and biopsy was recommended.

I decided this time to go to a city breast cancer hospital for the biopsy. I literally went into shock when I got the call at work, that I had ILC!  

Because I felt so strongly that I would never get breast cancer again, I doubted everything.  What else did I believe that wasn't true?  I decided to be mentally proactive from day one and I asked for mental help at the hospital when I went to see the breast surgeon. I was linked with a breast cancer social worker at the hospital.  She was amazing and really kept me avoid a mental crisis!  I was talked into mastectomy with a DIEP reconstruction which is not what I wanted.  They wouldn't do what I wanted, a double mastectomy with no reconstruction.  Anyway on the first week anniversary of my surgery I looked at my body in a full length mirror for the first time and freaked out.  I cried all night. I looked like a monster!  It was my social worker who was able to calm me down.  

I may be the only one who feels this way but I told my social worker that one of the things I that disturbed me most, was both times I had cancer, the doctor described my tumor as very TINY. (1.0 cm and 1.3 cm)  I know they said that to remove fear but they said it in such a way that it made me feel like my cancer was too small to be significant.  I still feel totally unworthy of being called a breast cancer survivor and prefer breast cancer TREATMENT survivor.  I don't feel worthy of things offered to me because my cancer was so TINY. Both times I actually wished it wasn't found so early, I wish it would have been at least 4.0 cm!  Crazy I know, but that is how I felt, and still feel. I guess I think that a breast cancer has to be at least 2 cm (aprox. an inch) to be legitimate.  I don't know why I feel that way, I just do, at least when it comes to my cancer.

Sorry for over sharing!

Those mental health workers are correct. Often the hardest time mentally/emotionally is just after the intensity of diagnosis, surgery, chemo, and radiation are over. And if a woman is then put on anti-estrogen therapy or had chemo-pause, it can make her feel even worse from lack of estrogen.

Hi all, I have been diagnosed with triple-negative stage 4 inflammatory breast cancer. I have also battled with bipolar depression for most of my life. I am 59 years old and have been on social security disability or both physical and mental health issues.

When I was first diagnosed in February 2019, all kinds of doctors sent me for all kinds of tests stat! The cost of these tests were staggering to me. Between the cost and the anxiety then I was not prepared to endure, I stopped all further procedures for 6 weeks.

I have now had my first chemotherapy treatment. I know the stats recovering from triple negative inflammatory breast cancer stage 4 is very difficult to treat successfully.

I would appreciate it any words of wisdom or otherwise.

Hi, I haven't posted for quite a while but feel the need to again now!

I completed my treatment in February this year (lumpectomy, Chemo and Radiotherapy) and desperate to get back to 'normal' asap, I returned to work on a phased return at the beginning of March.

Keen to prove both to myself and everyone else that I was 'better', I pushed myself too hard, too fast...I could feel myself starting to slip (both mentally and physically) and should've stopped, but didn't...I continued to push myself to the point of almost complete exhaustion! I was picking up bugs and colds (working in a school) , mentally there were times when I felt like my head would explode..dizziness crept in and I just didn't feel like myself at all...

Then, 2 wks ago I found another lump......thank god it turned out to be nothing...but it made me stop and take the time I needed to recognise that I needed to change things and look after myself!?

I've been to gp for bloods, all normal! Been to a Cancer Support Centre and talked...really talked...about everything! It felt SO good to stop pretending everything is ok....and I now have some counselling sessions set up, starting next week! I've also spoken to my work, and have cut my hours right back again for the foreseeable future! Taking control and being honest about how I'm feeling has started to lift my mood already!

After care is SO important....possibly MORE important....once your treatment has finished, everyone expects you to be cured/normal....but the fatigue and mental health side of things take as long, if not longer to get through?

Am hoping that now I have made these decisions, my life will start to get back on track and my new 'normal' will be good/better

Anyone else out there struggling with their ‘new normal’