Northern Lights: A New Diagnosis
It is autumn here now and the brilliant golds, reds, and greens combine together for the showiest nature display of the year! The sunrises are gold against the charcoal sky, and the prairie hares are changing their fur color from tawny to whitish in preparation for winter snowfalls.
Rather than spending time outside enjoying the beautiful autumn weather, I am preoccupied with a new wrinkle in my health that may or may not be related to my multiple myeloma: a secondary cancer. It has been caught early, and I am hopeful that it will soon be dealt with medically and I will be back to my new normal of just living with multiple myeloma.
It all started earlier this summer. Thanks to my reading and awareness about myeloma, I remembered to ask my family doctor about getting a mammogram again this year. I just had one done last year, and many more over the past 25 years, always with normal results. But something sparked my memory at my annual physical checkup this June, and I mentioned to my doctor that there is an increased risk of secondary cancers in myeloma patients who have been treated with Revlimid (lenalidomide) either together with melphalan (Alkeran), or after an autologous (own) stem cell transplant.
Regular readers of this column may recall that I received low-dose Revlimid for one year following my stem cell transplant. I was taken off the drug by my oncologist after the results of several major clinical trials showed an association between Revlimid and secondary cancers (or "second primary malignancies," as they often are called in the medical literature). That was five years ago, though, and I had nearly forgotten about it.
In any case, my family doctor agreed that I should have another mammogram this year. So I had the mammogram done in the first week of July, expecting the same negative results.
To my surprise, I got a call back from the radiology lab requesting a second mammogram on one side. At the time, I speculated that the second mammogram might be necessary due to a bruise I sustained after a nasty fall on a cement sidewalk earlier in the summer. However, the radiology technician told me that the bruising had nothing to do with the test. The radiologist had detected a change since the previous year in the area of the ducts.
After the second mammogram, I met with the radiologist. The doctor explained that there was a suspicious area of microcalcification in the ducts that needed to be biopsied and sent out to a pathology lab.
“Oh no, not another biopsy,” was my immediate thought. Bone marrow biopsies have left indelible impressions on my mind. However, my doctor explained that the biopsy was necessary, so four weeks later I was scheduled in for that test as well.
I reported for the biopsy the first week of August. My dear husband Dilip wanted to come in with me for the procedure, but he had to wait outside in the waiting room with other caregivers, who all had worried looks. The biopsy itself was not painful, since a lot of local anesthetic was used, but the core drill sounds were quite unnerving to me. The staff were super helpful and nice, though. I had stopped taking low-dose aspirin for a few days before and after the test, since that is a vascular area of tissue, and bleeding would be expected to occur.
After waiting for the pathology results to be sent to both my family doctor and my hematological oncologist, we went in to get the results at the end of August. Dilip was really hopeful that this area of micro calcification would be benign, but I had a sinking feeling. "If it looks like a duct, and quacks like a duct, maybe it is a duct with cancer!”
Turns out I have been diagnosed with ductal carcinoma in situ (DCIS), a condition in which cancer cells are contained within the linings of the breast ducts. In other words, the cancer cells have generally not spread out of the ducts into the surrounding tissue or to other organs of the body.
DCIS is the most common type of non-invasive breast cancer. Fortunately, it also is almost 98 percent curable if the patient receives the appropriate treatments.
The word ‘curable’ certainly caught my attention, since I have been dealing with an ‘incurable’ cancer for many years now. Treatments could include surgery, radiation, and hormone treatments.
As you can imagine, this new diagnosis threw me and my family into a tailspin, and we have been on a learning curve since August, finding out more about DCIS.
After the biopsy result came in, I was quickly referred over to a breast health clinic, where we met with a surgeon to discuss the results and determine a course of treatment. Because I already am a cancer patient, my treatment options were discussed between the surgeon and my oncologist at the hematological cancer department.
I should be fine. After the discussions with the surgeon and my oncologist, I have decided on breast-conserving surgery, to be followed by radiation treatments. I won’t be taking my usual myeloma treatment of Revlimid and dexamethasone (Decadron) for three months while I go through these other treatments.
I owe a debt of gratitude to all of you at The Beacon – editors, other contributors, and readers – for the non-stop articles and forum postings over the years that have discussed secondary cancer. If I hadn’t remembered to ask for the extra mammogram, this non-invasive cancerous condition would not have been caught so early.
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The quotation for this month is an excerpt from the song "Over the Rainbow," music by Harold Arlen and lyrics by E.Y. Harburg, written for the movie The Wizard of Oz (1939): "Somewhere over the rainbow, skies are blue and the dreams that we dare to dream, really do come true."
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Nancy, what a rollercoaster you and your husband have been through over the least several months! I'm so sorry that y'all have been dealing with this.
Of course, the last thing anyone wants to hear is "secondary cancer", but I'm so glad that it's a treatable one that they found early!
I'm sending you a big ol' virtual hug and lots of well wishes for a speedy recovery.
Tabitha
Thanks for sharing with all of us the story of your new diagnosis, Nancy. I was sorry to hear about the unexpected turn of events you experienced this summer. I am glad to hear, however, that the form of breast cancer you've developed is one that usually can be treated successfully. Best of luck with the surgery and radiation therapy. You have lots of people all around the world wishing you the best!
Thanks so much for your kind comments, Tabitha and Jim! I thought it would be good to share this in terms of encouraging people to get their check ups, and in my case mammograms, regularly! Even men can get breast cancer, but I don't know exactly about the regularity of testing for that. Many caregivers are also female, and should look after themselves also!
I think that if I had to have this DCIS diagnosis, now is better than at some time when my myeloma had flared up again. I have been at a very low level of having anything myeloma-related detectable recently. So I am hoping that being off of treatment for a while will be fine. I am being tested for the myeloma proteins monthly still though.
I had the surgery recently, after I finished this column, and it went better than I expected. I am feeling fine and am back outdoors walking lots and into my normal activities. I am just waiting now on pathology results and scheduling for radiation treatments later this autumn.
That certainly is not "good news", but it sounds like the prognosis is very good for you. I wish you all the best in this new challenge.
Prayers being sent your way that the surgery / radiation go smoothly. Classic case of a bad thing happening to a good person.
Scary story, but sounds like the cancer is contained and you will have a full recovery. Hard to say definitively that the breast cancer was triggered by the Revlimid, but it is suspicious. You are in my prayers!
Mark Pouley, Mark 11 and Ron!
I am grateful that it seems that this form of breast cancer is one that can be 'cured' from one's system! Of course I don't know what got this started, and I can't blame the Revlimid, since breast cancer is relatively common among women anyway. The actual cancer is way more widespread in the population than is myeloma, and of course all of those people didn't take Revlimid! But, now I am nervous about taking Revlimid, as it may have been implicated in this.
Thanks for your well wishes and prayers being sent my way! I really appreciate it.
Many wishes for a speedy and complete recovery!
Nancy, it is great to read that the "cure" rate is so high with your breast cancer. I hope you'll keep us posted when you receive the pathology report.
I did things opposite of you. I was diagnosed with invasive ductal carcinoma (estrogen positive) in 1997 and with invasive ductal carcinoma (estrogen negative) in 2011. I didn't realize it at the time, but my cancer was "triple-negative," and my odds of surviving three years was low. In 2013, I was diagnosed with multiple myeloma. I've gone through two stem-cell transplants, the latest was July 29th of this year.
I happily, yet reluctantly at the same time, go through whatever treatments I need for my cancers and I can say family and friends are the primary reason for this.
I wish you and your family the best. Our prayers are with you.
Ellen, thank you!
Tishpa, I am sorry to hear that you have had two incidences of invasive ductal carcinoma, plus active myeloma, in the past years. I hope that your recent stem cell transplant went well; you would be at about day 70 now? One of the tests at the pathology department will be for 'hormone receptor status'. This tells whether the cancer cells needed estrogen and progesterone hormones to grow. If the biopsy sample taken at the time of the surgery has those cells, the tumor is called hormone receptor positive. Hormone therapy could be recommended. So I am waiting to get those results at my next appointment, post-operative.
I agree that one's family and friends just pull one along throughout these trials in life! When I woke up in the recovery room after the surgery, I started talking about my three grandchildren to the nurse helping me. She had five grandchildren, and we had a conversation about toy trains!
Best wishes to you too, Tishpa.
Oh no Nancy, so very sorry to read this.
I have had the same treatments as you: Revlimid, melphalan prior to my 2010 (auto) stem cell transplant, etc. Back on Revlimid after coming out of remission in 2013. Now on Kyprolis.
From the beginning, I read about the possibility of secondary cancers too. Several people I know with myeloma have also had secondary cancers. I worry about this for me too, as I am nearing my seven-year anniversary, and six years of continuous treatment
I'm IgA lambda multiple myeloma, which are you? I wonder which "type" of myeloma is more susceptible to secondary cancers?
Anyway, wishing you all the best in your new type of treatment for stupid, evil cancer. You are very brave, Nancy. Thank you so much for sharing your status with us!
Julie
Thanks for your kind words, Julie! I think that all of us facing down bad or uncertain health situations are fairly brave, but sometimes you just have to do your 'crying in the rain', as the song goes.
I am not really worried about the DCIS, since it seems that it can be treated successfully. I think that my doctors were good to pull me off myeloma treatment for a while now. Coping with one set of treatments seems enough right now, and I feel much better being off of the treatment. My case was discussed by several doctors at the cancer centre, and I really appreciate the coordination between the breast health and the hematology departments, to help me to get thru this as best as possible!
FYI, my myeloma type is IgG kappa. Sounds like some sort of strange sorority, doesn't it?
Congratulations on reaching your 7 year anniversary too! By this time we are fairly knowledgeable and realistic about myeloma, don't you think?
Nancy,
We have similar stories, but in reverse. I was diagnosed with invasive (slightly) ductal breast cancer 6 years ago at age 69. Then, 2 years ago, I was diagnosed with multiple myeloma. I've done well with both: had lumpectomy, radiation, and 5 years of anti-estrogen anastrozole. Have been in myeloma remission 18 months and take Revlimid 10 mg daily. There are GI tract challenges with the Revlimid, but I cope.
Keep strong and carry on. It's all we can do.
Madge
Thanks for sharing your story too, Madge. I am glad that you did well with the ductal cancer as well as the myeloma. The anti-estrogen drug sounds like the one I have heard of also, if one has the 'hormone receptive' type of cancer, and is an older, patient. One takes it for five years. So I will find out about that soon also, and it's good to get your experience of it.
Thank you so much for sharing this situation with us. As you mentioned, we all have read about secondary cancers in the Beacon, but few have actually shared their stories. I know going through this additional ordeal cannot be easy on you, but that 98% curable statistic sounds very hopeful. So far, my husband's secondary cancer has been squamous cell cancer, which at this time appears to be easily treatable. I wish you well during this treatment phase and look forward to hearing from you once your DCIS treatment is completed. I will also be interested in how you feel being off the Revlimid for three months.
Nancy, I read your column this month with my heart in my throat. What a stressful and anxious summer you must have had waiting for test results! But I’m so glad to hear that your breast cancer is non-invasive and eminently treatable. Sending you healing thoughts and best wishes as you surmount this new challenge.
Thanks Patty B for your well wishes. I hope that you husband doesn't have too much trouble with the squamous cell carcinoma. So far everything is going well with my treatments, so I feel fortunate so far.
Karen, nice to hear from you and hope all goes well with you too! Our summer was stressful about the diagnosis, but now that the surgery is over with I feel more relaxed. That was my main worry actually.
Dear Nancy,
My sister was diagnosed with DCIS twenty years ago, and was also treated with breast-conserving surgery and radiation. She remains cancer-free to this day. I still remember how worried I was – worried enough to call a childhood friend, who is an MD, to get his view (my sister's oncologist was quite reassuring, but I didn't know him).
My friend remarked that no one wants a breast cancer diagnosis; it's never good news. But DCIS is the mildest and most curable form that exists.
You are in my thoughts and prayers.
Thanks Robert, for sharing the news about your sister. It is good that DCIS has a good prognosis, provided one takes the treatments suggested. I am so glad it was caught early on too.
Dear Nancy
My cousin 2 years ago was diagnosed with the same thing. Since her treatment, all has worked out well and she has now put it behind her & has done so well. So pleased you found it early. All the best regards, Dean
Hi Nancy,
You are brave. You are determined. You are graceful and find the silver linings ("If I had to get this, now is a better time ...").
In short, you are a role model for all of us.
I'll be thinking of you and wishing only the best for you.
Mike
I'm very sorry to hear this, Nancy! I'm already praying for you! You got this, Nancy!
Hello Mrs. Shamanna. This struck me personally it seemed. But I love you for your brave and "bring-it-on" approach. It indeed is a relief to learn about the treatability and curability of your new-found challenge. My best wishes are with you. Get well soon and come back stronger.
Dean - I hope your cousin has beat this DCIS and it doesn't recur. That is encouraging to know.
Mike - I feel very privileged to be able to write and to have such encouragement from the Beacon community. I felt much better from reading everyone's kind words. We cannot know the future, but try our best in the present day to overcome obstacles in our path. Here is a Robert Burns quote from 'To a Mouse' (1785)
the best laid schemes of mice and men gang aft a-gley,
An' lea'e us nought but grief and pain for promised joy.
Still thou art blest compared wi' me!
The present only toucheth thee;
But oh! I backward cast my e'e
On prospects drear!
An forward tho' I canna see.
I guess an' fear!'
In the times of Burns, there wasn't much in the way of modern medicine. But now we have a lot better treatments and outcomes, so I feel encouraged by that.
Thanks Sue, I always enjoy seeing you! We have a lot in common; see you soon!
Upasana - Thanks for your kind wishes. I am feeling a lot better now that I am recovered from the surgery. I hope that the radiation treatments won't be too difficult either.
Hi Nancy,
Thanks for sharing that Robert Burns quote. I'd read the first part of it, but not as much as you shared. Very appropriate!
By the way, did you know that my father was Robert Burns? But not *that* Robert Burns.
Best wishes to you and Dilip. I hope things go smoothly and successfully with the radiation treatment.
Mike
Thanks Mike, you must have some Scottish heritage too then! (I am a McDonald). I played at so many Burns dinners (January 25) that sometimes the famous poet comes to mind. No, I didn't know your father was also named Robert Burns!
I hope you are well! As far as the myeloma goes, I am fine, which I suppose gives me time to deal with this other health issue. I would rather just be enjoying the autumn, but sometimes we have to slow down and take the medical treatments we need as they present themselves. Dilip is always there for me, and I rely on him so much! We are juggling what we had already planned to do this fall between medical appointments and treatments too.
Hello Nancy,
I am saddened by the news of your secondary cancer. Your writing always buoys my spirits, and I feel a lovely connection with you. I'm so glad that the treatment team recommends taking a break from multiple myeloma treatment while you undergo the DCIS breast cancer treatment. One thing at a time. Plus your body can take a break from the side effects of Dex/Revlimid.
I know several individuals who have successfully navigated DCIS breast cancer successfully. That being said, the treatment is still not minor. So glad that you have a loving partner by your side.
I count on your columns, so keep on writing.
Maureen
Hi Nancy,
It's rare that I actually have two columns to respond to – yours and Tom's. Being the caregiver for my husband's myeloma, I am also a 12-year breast cancer survivor myself. I'm so sorry you're having to endure another cancer issue, but this is a very treatable and curable cancer, as it is so nicely contained! My heartfelt and best wishes to you for your strength and endurance through both of these ordeals. My prayers are with you! Keep up your strength and optimistic attitude!
Maureen,
Thanks for the kind thoughts! I enjoy your column very much, but hope that you were able to get over the infusion reaction you described last time. You are strong to cope with all of that!
Being on a break from the myeloma treatments is really helping me now! I am glad that my doctor 'prescribed' that, and according to recent blood tests, my counts are still good, so I am super thankful for that. As it turns out, the pathology report showed that there were also some cancer cells in the lymphatics, so now I need to have sentinel lymph node mapping and biopsy. (Oh no! Not another day surgery!) However, the surgeon was hopeful that the cells were all removed from the first surgery, since the 'margins were clean'. I am learning 'surgeon speak'. It is a new language for me.
Mary G,
Thanks for sharing that you are a 12-year breast cancer survivor. I am sure that your husband was your caregiver in the past, and now you can help him! I hope he is not too ill though.
Hi Nancy,
I am following the same path, only in a much more compressed time frame.
I was diagnosed with multiple myeloma in May 2016 and had just finished my induction therapy when I was diagnosed with DCIS from a routine mammogram in August 2016. No treatment was suggested for the breast cancer because I was in process for a stem cell transplant. I am now 3 weeks post stem cell transplant and will meet a surgeon in early November to discuss my options. I too feel that a 'curable' cancer sounds better than an 'incurable' one. Let's knock this latest one off the table!
Susan
Hello Susan, I totally agree that we should knock this DCIS type of cancer away! I hope that your upcoming meetings and then treatments work really well. Same wishes for the stem cell transplant results. That is a lot to contend with in one year, but you have a good attitude!
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