Life after IBC

Sherlocked

Hi folks,

Every once in a while, I like to stop by and give some updates. It's always a little difficult, because I'm torn. The thought of 'bragging' to fellow IBCers about my life is such a horrible thought, but I want to offer hope, as well. I feel, I know, that a lot of people who do well in treatment don't come back for that exact reason. But I just wish I'd had more stories of hope when I was first diagnosed, so here goes.

I was diagnosed in 2010, and had 4x AC every three weeks, then Taxol and Herceptin for 12. I got an extra dose of Taxol on a Herceptin-only week. I then had a double mastectomy, radical on cancer side. I chose double mx because IBCers are increasingly living longer and longer, and honestly, we don't have an actual handle on the risk of IBC in the other breast in the long-term. No more mammograms for me. Then six weeks of daily rads to my chest wall. I took Herceptin for another 8 months, but it was hurting my heart pretty badly (I lost several loved ones during treatment.) So, that was that, all pretty standard.

I had a complete response to chemo. I did manage to exercise for three months into chemo, but then the Herceptin really started to hurt me. No juicing or other supplements, except some of the liquid meals when I was really ill. A *lot* of chocolate milkshakes. I didn't know it before, but learned that cancer is just your own body going haywire. Not an invasion of something foreign. So, anything that would be a super nutrient, would be picked up and used by the cancer first. Made sense to me, so that is what I went with.

I stopped networking with IBCers about 3 yrs ago, in general. The truth is, I was going to have reconstruction, and there are people vehemently opposed to it for reasons I can only imagine, and are therefore, rather unsupportive. Some people have probably been advised by their doctors who have old information. Others have their own individual motivations, and whatever is correct for you, is correct. But the truth is, yes, absolutely, if you are NED for a year and *want* to have a reconstructive surgery, read about options and consider the pros and cons, and do what you wish. I had a DIEP, and it was the correct decision for me.

So, it's 5 1/2 yrs later now, and cancer is rarely a part of my life. I have some swelling in my right arm and hand, but just ignore it and don't bother with those PITA gloves and sleeves. Doesn't bother me, and when it does, I find that my weight is creeping up (*cough* winter fat). Weight loss, for those can afford to lose weight, is often an excellent method for reducing lymphedema, which only makes sense. I regularly lift 80 lbs because our old, big dog has arthritis and needs help a lot. I am very happy. My sex life is wonderful. My reconstructed breasts are beautiful, attractive to my partner, and oddly enough, I now become aroused when he touches them (as he does). I think my brain is just forgetting about the fact that these are replacements, although it is always possible that nerves are reconnecting.

The couple of years post-survival were harder emotionally than the period of treatment. Lots to comprehend, accept, understand, and heal from. I'm no longer sad. Every illness was a recurrence in my mind for years - really it's only been the last year that a sinus headache didn't have me leaping to mets. I suppose the bad thing is that as of about 18 months ago, I no longer go to doctors, unless I'm ill - my doctor and all of the staff I loved left our local cancer center. Last January I got a UTI, and that was the last interaction I had with a doctor. Should I be having blood tests, scans, etc on a regular basis? Not the choice I've made. I had so many MUGa scans because of my heart, and refuse to have unnecessary radiation. Blood tests were never useful for tracking cancer, even when I did have active and rapidly-spreading cancer. And, it wouldn't help me live longer, and would certainly reduce my happiness. So, why would I? It would give me no emotional comfort to get a clean scan, I know too much about IBC. However, I will go for a follow up sometime this year, so I can be tracked for research, essentially. And, I certainly went and had an MRI when I had persistent low back pain for several weeks (moderate stenosis). But if I'm healthy, energetic, happy, and symptom-free, I just see no reason to go. If it comes back, I'll be going to the doctor plenty. Until then, well truth is I hate doctors and hospitals and lidocaine cream and bandages and, of course, not being in control.

There are things about my lifestyle that *may* have helped me, and some that definitely did. For example, 3 years ago I switched careers and am now doing software quality assurance and developer-in-test work. If you want to conquer chemo brain, I recommend that you learn to code Java. Or anything else that is *challenging*. Challenge your brain, don't give up.

I am what I'd call a flexitarian, or mostly vegetarian. I will eat fish sometimes, and eat poultry a few times a year. I strive for an hour of exercise a day, and that includes "speed housecleaning", where I just clean the house, just fast. I set the stopwatch on my phone, and on super low motivation days, I will have to add up that 7 minute walk, 20 mins speed cleaning, 18 mins dancing like a fool, and 15 min dog soccer session. I do also do yoga, and you can too, from a chair if you have to. It is incredibly relaxing and stress-reducing - calm breathing and stretching, its hard to beat.

Like everyone else's life, my life isn't perfect. I'm not completely unscathed - I do have the aforementioned lymphadema and a moderate case of white-coat syndrome. But IBC doesn't rule my life in the least. Once in a while someone will say something about everything I've overcome and such, and I will sometimes have no clue what they're talking about. I mean to say, I will and often do *forget* I ever had IBC.

I guess I just wished I knew 5 years ago that it was possible to forget you had IBC, and that's why I wrote this.

I wish you all comfort, happiness, warmth, and joy.

Hugs,

- S

Scwilly

S - Thank you so much for your post. I am two and a bit away from my DX of IBC in November 2013. My timeline so far is similar to yours, but I first had a UMX, followed by a second mx when I had my DIEP reconstruction. I mostly don't think about IBC, and when I do its certainly not as intensely as I did when diagnosed and during treatment. I love your advice to challenge your brain. I haven't worked since I moved to California from the UK 5 and half years ago. I was about to start looking for work after about a year or two and then I was DX and have been on and off applying for jobs since finishing treatment. I have managed to rustle up the grey matter a bit by completing a Data Mining online course with UC San Diego.

So I echo your encouragement to those who are just at the start of this tough journey. Time will move very slowly but will pass. I wish you all successful, and as comfortable as possible, treatment.

Sarah

LMN

Thanks Sherlocked! I really enjoyed your post! My diagnosis was in June 2015 so I am still in active treatment. My herceptin will end July 2016 and I plan to have a big party!

Mamiya

Thank you for this post. I am in active treatment, and it so far hasn't been a standard success story so it is good for me to read yours.

Sherlocked

Thanks, Sarah, so glad things are going well for you!

LMN Can't wait to hear about your big party!

Mamiya, I hope that new clinical trial kicks IBC's butt.

Valstim52

I found this thread by accident. I hope more post, it is really hopeful to those of us recently diagnosed, that one day we can get past this terrible thing.

mara51506

I also want to thank you for your post. I am currently on the Herceptin leg of my treatment and don't feel too badly. I will be seeing my breast surgeon to map out whether or not I will go flat or have reconstruction on the right side. I am leaning toward seeing if I can get a prophylactic mastectomy on the left side because I am concerned about recurrence myself. There is a small part of me that just does not believe it won't show up again since I am 44. I also lean toward not wishing to be scanned too much after because if something is wrong, overall, my body will tell me. I will get regular testing for colon cancer since my father died of it as well as mammos and examining my breasts/scar as well but beyond that I try to live in how I feel now. So far have been lucky with Herceptin, it has not hurt my heart. Again, thanks for letting us all know that things do move beyond cancerland and this diagnosis does NOT have to be an immediate death sentence. Sometimes we forget that most people on the boards are in treatment and it makes it seem like people NEVER get better, not realizing that for some people getting better means moving off the boards and we don't see them.

Milwmama

Thank you Sherlocked for your post. I am always in search of the success stories instead of the not so successful. Somewhere I read a person stating that they take the percentages and include themselves in the survival ones. That has been my savior through all this. I'm nearing the end of chemo and still have a long process ahead of me, but that is what keeps me sane.

If the % is 60 bad 40 good, I'm in the 40%, or whatever the statistics are today. Keep thinking that ladies (and gentlemen). And stay away from most of the internet