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Mon, Nov 11 11:25am · Portal vein thrombosis (PVT) after breast cancer treatments in Breast Cancer

The AI drugs and Tamoxifen are notorious for side effects with many women. I think we all feel it must be 'just me'….but no. I also suppose that there are many women out there who never go on these support sites because they can take the drugs to no ill effect. It's not your imagination that these drugs can have powerful and disabling side effects. I was unable to take any of them but then, I have side effects from many, many drugs so I'm very limited. I was fortunate to be only Stage 1 and I'm 61 years old (almost 62), so that's quite different than 33 years old……My body has already given up the hormone fight. But the drugs don't only remove those pesky hormones……they do something else and I've done what research I can and I don't understand what else they do to our bodies, but sometimes it's just not worth the extra pain.
Since I couldn't take the drugs I lost weight, changed how I ate (although I was always a pretty good eater), added some supplements including Vitamin D, etc with the blessing of my doctors. The effect was ………….I have so reduced my hormones that now I'm having issues with having too little. I know…….really? In fact, I am now using a vaginal estrogen cream because my vagina is falling out due to atrophy. The hormone saga continues. The same doctors who wanted me to reduce my hormones are putting them back in now.
We're all different but the pain and side effects from these drugs are real for many of us. The decisions are hard, the journey is hard but everyone must listen to their own bodies and make peace with the trade offs.

Sun, Sep 15 12:05pm · Aromatase Inhihibitors: Did you decide to go on them or not? in Breast Cancer

Colleen, Thanks for posting this calculator. I hope all doctors are using this and I hope women will use it as an 'add on' to the other information they receive.

Mon, Sep 9 10:50am · Cutaneous T Cell Lymphoma in Blood Cancers & Disorders

So sorry to hear about your condition. I too suffer with eczema from birth and after my breast cancer mastectomies had a rash on several parts of my skin for over a year and half. The doctors couldn't diagnose it but said it might be early CTCL. It's a wait and watch for me. It seems almost impossible for doctors to diagnose skin conditions unfortunately. They will say that CTCL is rare but I think more than likely it is just under diagnosed. I hope you'll find some answers and some relief. People (including doctors) who don't have trouble with their skin don't understand how horrible it can feel and the impact it has on your day to day life. Just trying to lend support to you. Wish I had something more helpful to share but keep us posted please and thanks for sharing when you feel so badly.

Sun, Sep 8 10:36pm · Cancer and returning to work in Cancer

Thank you…………I needed something uplifting tonight and your post did it! So pleased to hear you're healthy and doing well.

Sun, Sep 8 7:57pm · Cancer and returning to work in Cancer

So wonderful to hear positive reports like this!

Sun, Sep 8 3:22pm · Cancer and returning to work in Cancer

Sorry to hear about all of this. Uncertainty is a horrible feeling and creates a lot of stress. It sounds like you're making every effort to make this work and every person reacts to illness physically and emotionally in a different way. Unfortunately not all people are empathetic to the degree they need to be.
My husband used to say to me about work, 'it's not you'……and it's not you. It's the lack of sympathy and understanding in the world with some people. Keep your position, do your best and remember to tell yourself you are doing your best and 'its not you'. You deserve kindness and understanding and you'll get that from all of us here as you need it. Don't let them bully you into quitting. You can collect unemployment if you are fired (in most states) but not if you quit. As hard as it might be or feel you are better with your job and health insurance for now until you're stronger and able to have the energy to decide if you want to make a change.
Everything feels terrible right now, including this unnecessary stress at work. Weather the storm and you'll come out on the other end stronger.

Sun, Sep 8 12:48pm · Cancer and returning to work in Cancer

Hello zakidney57 – When I found out I had breast cancer it was terrifying and exhausting. Add to that the treatments, appointments, and continued worry and not only are you tired from all of that but you still have a completely different take on life because you're been fighting to keep your life. Until you've experienced it or watched a close loved one go through this, it's hard to explain. We're here for you and understand.

I was working full time at a job I loved and I had a great relationship with my boss. So much so that she consulted me on all matters and even new employee hires. She and my employer were very sympathetic when I was diagnosed and very supportive in the early months after my bi lateral mastectomy. I needed extensive care after the mastectomy and then developed lymphedema (arm swelling) and required a second surgery a year later to resolve that problem. It was after the second surgery (and a bout with shingles….low immunity from stress I think), that my employer and especially my boss decided they didn't want to insure me any more. My boss, I found out too late, had a long history of blaming her employees for her shortcomings and took all the credit for her employees work. I've worked in high stress fields my whole career but I was too tired to fight this the way I might have or maybe should have but ultimately my employer decided to 'eliminate' my position and offer me a part time, no health benefits job. They offered significantly less than I was making, no health insurance and only part time hours doing exactly the same work I was doing. In the end I forced them to 'fire' me, although they never said that. I contacted a lawyer who was great support and I left my employer with unemployment insurance and now work at two part time jobs instead. My situation isn't ideal but my husband is quite ill and I don't want to take a new job and leave an employer 'high and dry' should my husband's condition require even more full time caretaking.

My advice is to document all of your meetings with your supervisor and document your work and efforts to be a good employee. Employers can let you go in all states that are 'right to work' states with little or no reason, but if you're doing your best, have a good track record and are upfront, as you've been, there are legal guidelines employers must follow and letting you go or demoting you or simply being unsupportive are frowned up in the law. Problem is………you have to be proactive in protecting yourself (while tired and stressed from your medical situation). Doing that documentation made all the difference for me in the long run. I could have sued my employer and they know it and there are times I wish I had but my lawyer advised that the stress of that would be high and wouldn't help my recovery. I'm still angry and bitter about how I was treated but I'm ok with having moved on the best way I could to protect my overall health.
Please don't feel guilty or inadequate or bad about your performance at work. You're doing your best and employers need to adjust to health issues if they are decent people and if they are not, be prepared to document your side of the story.

Tue, Sep 3 2:46pm · Palliative Care: What is it? How do I get it? in Cancer: Managing Symptoms

I found the lack of any emotional support from our medical people during my breast cancer journey very disappointing. However, that's how I found the Mayo site and it's been a real blessing and help. To finally find someone who acknowledges that having cancer and now being a cancer caregiver is difficult and challenging has been uplifting. I tend to both act and be strong but underneath that is great fear and sadness that I'm sure is universal. When you act like you have it 'all together' doctors tend to think you do and don't offer much hand holding. As my husband and I face his cancer we have found that our world view on illness and death are somewhat different. I think it's important that my husband has the chance to talk to a counselor without me and then for me to talk with the counselor without the interference/noise of years of married life, I hope I can see my husband's point of view better and be better able to help him face this diagnosis. I'm a fix it, get it done, do whatever it takes kind of person with illness and he's a quality of life guy who is much more accepting of death……..this will help us work this out and I think we won't feel so alone and abandoned. My husband's difficult diagnosis of Cancer of Unknown Primary (which persists after 18 months) has been a whole new kind of stress.