8 replies to this topic

[Dina36]

Hallo my CML  friends,

I was dx with DCIS back in July this year and this new diognosis came after only two years since my CML dx. ahh

Ike CML wasn't enough. I was dx with CML at the age of 36 and now DCIS at the age of 38. Breastfed both of kids my second child 3 years and 3 months alone in fact I used to balme my CML dx on my prolong breastfeeding but I thought it would at least spare me from getting a breast cancer ohh was I just wrong.

DCIS is an early stage breast cancer so I'm fortunate about caughitng it early and have a very high treatment success rate but still STILL I have to go thru many surgeries and all. So My point here is I just wanted to tell everyone to take your physicals every year and ladies take your mammograms please, we all get so preocupied with CML and forget that we still can get other dieseases.

Take care everyone.

Dina

[GerryL]

Hi Dina,

Just wishing you all the best with the treatment for DCIS.

[mariebow]

When did you start having mammograms, I have 3 daughters, one is 35 who started having mammograms two years ago, because of lumps in her breast, The other two one is 38 the other is 36, and I heard that new data says that they need to have mammograms earlier than 40 now, so I told them that they may need to start getting mammograms, but then I really do not want them exposed to the radiation so early, so I just would like to know how did you find out about your breast cancer.

[alexamay09]

Ouch! Sorry to hear this. I do know a little of how you feel. I was dx with breast cancer in 2009 and Cml in 2012. Its not easy and you are right to feel that one is quite enough thanks. Hang in there.  With such a good prognosis you will get through it. It will be tough and its certainly unfair. All good thoughts with you. Let us know how you get on. Xxx

[Susan61]

Hi Dina:   I wish you the best.  The most positive thing you said was Early Detection!!!  That is the key to any disease

I was just thinking that I am overdo for my Mammogram.  I have a tendency to get cysts in the one breast.  You should be fine, but any type of surgery or treatment is not something we look forward to.  Please keep us updated on how your doing.

Susan

[susanlathers]

Dear Dina

  My heart goes out to you and my understanding.  All people diagnosed with cancer of any kind at such an early age grab at my compassion.  There must be sometime in our lives when we are immune to these hard places, but it doesn't seem so.  the rain falls on the just and the unjust.

  My story is backwards from yours.  I was diagnosed with invasive breast cancer in 2003.  Lumpectomy and radiation (thankfully I was spared chemo).  But after both those procedure was on 5 yrs of hormone depravation meds.  2 yrs into it diagnosed with CML so was on both TKI and cancer meds. Rough few yrs.  But obviously it all worked it's been 11 yrs and I'm still here (I'm 72 and plan on getting a lot older).  I always blamed the radiation for the CML since it is a known cause.  I had 36 radiation treatments which were stopped because it had given me 2nd degree burns that were bleading. I would be interested in knowing how long CML goes undetected in our systems and if it is just waiting for some other thing to attack our bodies and weaken them thus allowing the CML cells to multiply.

  I think it is unusual for a person to have 2 different, unrelated cancers, seems like there should be a key factor in this.  My mother also had breast cancer and melanoma.

  I wish you peace and healing.  How are they going to treat the DCIS?

Susan

[alexamay09]

Gosh Susan, I thought I was the only one! Maybe the radiotherapy does trigger the cml.

Alex

[Dina36]

Thank you everybody who have responded.

Susan: I know I often wonder that too that there must be some key factor to get two diffrent diognosis with such a short period of time, prior my CML diognosis I was pretty healthy, never took any pills or anything really, not even headaches because I never had any,I was and am very active person, excersizing on regular basis, always ate healthy with lots of healthy leafy green vegetables, ate food with antioxidents, never drank or smoked, I mean I was so concerned about my health and stayed away from bad stuff but as a result of all of that I ended up with CML+DCIS and I have to fight two diseases its just so overwhelming for me and for my family.

My initial DCIS treatment was lumpectomy followed by radiation, unfortunately lumpectomy wasn't succesful and left four positive margins so now need to have a mastetcomy but no radiation. This is way too much for someone to go trhu now I really wish that I've smoked, dranked and ate all that junk outhere maybe I would be a healthy person today.

Thanks everyone.

[susanlathers]

two responses.... Alex, I have found no medical research or Dr. who validates my question re: radiation and CML and then how do you explain all the other CMLers.

Dina..... I'm so sorry to hear you have to go thro a mastetcomy,  I hear you about trying to do everything right and then you end up with THIS !  When I was having my bone marrow biopsy for CML I asked my onc what I did to bring this one on, wasn't breast cancer (that I caused of course) enough.  She was horrified at my question.  She must not know about all the beliefs out there among various groups who support it is caused by something we did wrong . We either lived in the wrong place, ate the wrong things, didn't to this or did do that.  I hate it when people lay the fault of cancer at the feet of the cancer victim.  Medical science is changing so rapidly I hope I can live long enough to see the day when they say "oh, we just found the cause of all cancer and guess what, none of you caused your own cancer.  Makes me cry when I think about the blame I have felt, knowing what some of my closest friends believe.

   The way breast cancer was described in a book I read by a noted breast cancer dr said every cell has an army of soldiers surrounding it and if one of those lays down it opens the door to cancer cells that are lurking in everyone's bodies.  What makes that soldier cell lay down is what they don't know.  Something effects your immune system (soldiers) and weakends them.  What it is that effects this immune system is unknown in my opinion.  Maybe you can look at one person with cancer and say well, look at the way they lived.  But, there is another person right next to them that lived the same way and they don't have cancer.

  Well, I've got to get off my soap box.  I will say some prayers for you Dina.  You can still have a long, fully enjoyable life with 1 breast and TKI's.  It will get better and it will move to the back seat, it won't leave the car but it will become a little voice in the back seat.  Right now it's a huge moster in your face and your families face all the time.  Find and make ways to shut it up and have fun.

Susan