I told my husband last week, “It’s just as hard to tell people you have cancer as it is to find out you have cancer in the first place.” So, let me take a deep breath and say:
I have breast cancer.
Everyone reacts with some degree of shock and sadness when I tell them the news. I feel like I’m hurting their feelings by saying it, like I’m responsible for upsetting them, even though having cancer is not my fault.
In an attempt to soften the blow, I focus on the good part of the bad news. I have Stage 0 breast cancer: ductal carcinoma in situ (DCIS). This means that the cancer cells are still confined to the milk duct and have not yet invaded surrounding tissue and become potentially lethal. Stage 0 breast cancer is not life-threatening and it does not have the ability to spread around the body. It’s a gray area between normal cells and invasive cancer cells.
One of my doctors described my cancer as “very curable.”
Still, DCIS has the potential to become invasive cancer and there is no way to tell whether it will or not, so DCIS is treated as if it is already invasive. I will have surgery to remove the cancer, and then I will have radiation therapy and endocrine therapy to destroy any remaining cancer cells. Layering these treatments together significantly reduces my risk of cancer recurrence.
My treatment for breast cancer will be complicated by my ME. I’m worried about crashing after surgery, and worried about how I’ll manage daily radiation appointments for several weeks. I haven’t found any published information about ME and breast cancer, although plenty about cancer-related fatigue (not helpful). Except for informal input from a few friends with ME, I’ll be making this up as I go.
I am very lucky that the cancer was caught at such an early stage, and I am also lucky to have an excellent medical team. My surgeon has recently treated two other people with ME-like illnesses, so she and her staff understand my concerns about surgery causing a crash. I’ll get extra IV saline at surgery, and I’m taking in extra hydration and protein to try and support my body.
But to be perfectly honest, breast cancer is a lot to carry. Even though all my doctors have reassured me that I will be ok, I still have moments of fear. My mother died of breast cancer in 2015 and following in her footsteps this way makes me sad. I try to gently remind myself that all these feelings just come with the territory.
I considered not saying anything publicly about this diagnosis. It feels more personal and private than ME, although I don’t know why. Ultimately, I decided that sharing my experiences might be helpful to someone else, and so it was worth doing. In that way, I guess, this is exactly like my approach to ME.
My surgery is this coming week. If you are so inclined, send me good thoughts and healing vibes. I’ll be back to let you know how it went.
Oh Jennie I’m sorry you’re having to deal with this. Many good thoughts and healing vibes from Colorado.
Thank you!
All the good vibes, strength and healing energy your way 💞💓💌
My advocacy before ME was cancer as that is greatly affects my family.
Please check out local resources that could possibly help with rides to treatment, lodging, etc https://www.cancer.org/support-programs-and-services.html
Thank you, Melinda. I’ll check it out!
Sending oodles and oodles of love your way. I’m so glad they caught it early. Please lean on your friends. We are here for you.
Rivka
Love you!
Jennie,
I’m so sorry to hear this. Anything on top of ME seems to compound, not add.
I had this very thing back in 2006. I opted to have a lumpectomy with no further treatment, and I’m fine, but I don’t have a family history. If I did, I would have chosen your exact treatment. I’ll be sending healing thoughts and hugs.
Laurel
Thank you for sharing that, Laurel! I’m glad you are doing fine. It’s hard to balance acting from panic with acting from science!
That’s so true. The word “cancer” sucks you into this whirlpool that it’s hard to get out of. Did they tell you what grade it is? Mine was low to intermediate.
Mine is also low to intermediate, and it’s small. I’m right on the edge of qualifying for a study that compares “active surveillance” to normal standard of care. But given my family history, I’m taking the aggressive route.
Thank you so much for sharing this. I know it is helping people. I”m so glad it was caught at this early stage.
Sending you all the love and giant healing vibes for a full and crash-free recovery.
Thank you so much for this message Jennie. As one of those people out there who turn to you for information and support- but have never met you- I can tell you that each of us has leaned on you for the columns you send, the support and information you provide.
I hope you can feel our support for you coming from all over.
Yes. ME/CFS compounds every medical problem. I have experienced this myself as I imagine many of us have. From personal experience, I know that the extra IV during surgery is a great idea.
I hope you have some good movies/tv shows to watch, books that are light reading and lots of love surrounding you.
Sending you love and support from Durham, NC.
Anne
Thank you so much, Anne. I have a stack of books picked out, and an EASY crochet project ready to go. I was quite relieved when a nurse told me that I can knit and crochet as soon as I feel able!
How could I have left out the knitting and crocheting? Maybe because my main prior surgeries involved my right arm and hand! Glad you can knit and crochet!
I’m sorry to hear this happened, but so glad they caught it so early. Thank you for sharing. You’ll be in our thoughts. Hoping the treatments have as small an impact on your ME as possible.
Thank you, Matt!
Sending love
Oh Jennie, I’m so sorry you’re going through this. My first thought when I saw this was, “Geez, hasn’t she been through enough?!” But of course I learned a long time ago that experiencing great adversity doesn’t protect us from MORE adversity. Life just isn’t fair. I wish you all the healing thoughts I can muster. And I know you will face this utterly crappy experience with the strength, wisdom, and grace you always do in order to help others.
Thank you so much, Lisa! That means a lot.
I wish you the very best! I was diagnosed and treated for stage 1 breast cancer 10 years ago, so I know how you must feel. I had a double mastectomy and chemo. I thought at the time, “this is not so bad – I can do this”.
I think I did better than my healthy friend because CFS gives us a wisdom about how to handle fatigue, with lots of practice resting!
I think you will do very well. You are tough and smart and your stage 0 diagnosis gives excellent prognosis. It will be a challenge, but you are ready for it!
Wishing a quick recovery!!
Oh Kathy, I am so sorry that you had to go through all that!
Sending you so much appreciation for your ongoing reports referencing ME. You are well respected!!!! I hope all goes well for you. I am a parent of a woman with ME, Rivka Solomon, and I have been following your writing for a few years. I hold you in my heart.
Thank you, Bobbi!
Hi J-Spot, Make sure the surgeon gets plenty of tissue. I had a good surgeon, too, but it her margins were too thin and itwas back within a year, faster growing this time. Also,(quickly) look into a radiation implant so you only have to go once. My college roommate had that in Seattle.
Yes, the margins are so important. I am really sorry that you had to go through this. And yes, I will ask about radiation implant. Thank you!
I’m sorry that you have to deal with this. Sending hugs!
Thank you!
I’m sorry to hear your diagnosis and I am wishing you well with surgery.
For surgeries, I advocated based on my comorbidities (dysautonomia, MCAS) to modify treatments. I can send you more detail obtained from Dr. Kaufman at the Center For Complex Diseases. For dysautonomia, it was basically more IV saline which you’re already doing. For MCAS, it was avoiding any morphine products during anesthesia or or follow up medication for pain. The specialists were very cooperative as there are a number of options other than morphine derivatives. Also EDS modifications were included on the hand out.
Yes, you can send me the handout at jspotila at yahoo dot com.
I am so sorry. Sending you prayers for full recovery, cancer free.
My ME specialist Dr. Bruce Carruthers (RIP) said when meeting with Anaesthesiologist ask for lightest anesthesia. It takes ME patients longer to pump the toxins out of our cells and recover.
Thanks for your advocacy!
Yes, I have a really hard time waking up from general anesthesia. The surgeon agreed that we will try to do the surgery under sedation instead of general.
Sorry to hear. Sending you prayers for full recovery, cancer free.
My ME specialist Dr. Bruce Carruthers (RIP) said when meeting with Anaesthesiologist ask for lightest anesthesia. It takes ME patients longer to pump the toxins out of our cells and recover.
Thanks for your advocacy!
Jennie,
We’re very sorry to hear this news. K and I are sending you all of our good thoughts for the surgery and recovery.
Thank you, Carla!
My heart is with you and all those who will tend to you throughout this process. I so appreciate your big heart and mind, and how you give words to feelings with such tenderness, lighting the way for others.
Thank you, my dear friend.
I had breast cancer 3 years ago. It was aggressive and, by the time of surgery, was about 3 cm by 5 cm by 7cm and was near the chest wall. I was not able to do any chemotherapy due to being at a very low level of functioning. I had a modified radical mastectomy and 5 lymph nodes were removed. I was only able to do once a week radiation therapy because everyday would have been impossible. The radiotherapy doctor had done some research and found that once a week had been studied on 80-year-olds with lung cancer and it helped them. I am post-menopausal and the cancer was estrogen receptive so I am taking Anastrozole. I have two more years of taking it. So far, so good.
I made up a package on ME ahead of time and made lots of photocopies. The first page showed Whitney Houston’s webpage so the doctors could see what I was trying to avoid by asking for accomodations. The rest was the Canadian Consensus Criteria, a few abstracts showing a selection of the latest research and the Nice Guidelines skewering the psychological theory. The doctors were very receptive. I gave it to them and they put it in my file. I brought a copy to each new doctor and also highlighted the similarity to long-Covid.
Here is how I managed: I ordered dinner delivered everyday and let dust build up in the house (I live alone) and reduced every other inessential activity. (Cleaners come once a month but I stopped doing the in-between light cleaning.) My sister made all my appointments because the cancer centre’s policy did not take my type of illness into account. Their policy was no appointments after 2:00 pm but, because I spend most of my day in bed, that was too early for me. I asked for accomodation of my illness and the doctors were fine with that but the appointments were made in a central office for all the doctors and every single appointment had to be changed for the whole year. It took my sister 45 minutes every time and she had to talk to three people every single time to change the appointment to about 3:30 pm. This would have been impossible for me to do. I wrote an authorisation letter for her to do this. At our centre, you could ask for a volunteer to help with appointment making. Your hospital might have something similar.
I brought a foldable stool and cushion to the appointments so I could put my feet up on the stool and support my back and head with the cushion while waiting for my appointments. This helped with the orthostatic intolerance and reduced exhaustion.
The time of the surgery was at noon but I had to arrive at 9:00 am for all the preparation, which of course was very early. Changing it would have meant a delay of weeks, which in my case would have been life threatening. I thought about it and asked to have a gurney so I could be wheeled everywhere. My surgeon was happy to accomodate me. It was the best decision I ever made. I was wheeled to 4 different locations and was able to get cat naps while waiting for procedures to be done. I made a huge difference to me.
Ask for every accomodation you need and reduce every unnecessary activity. It sounds as if you have family who can help and do things that you may not be able to do. I can be hard to admit when something is beyond you but it will be the only way to get through it. If you think I can help in any way, you may email me. My thoughts and prayers are with you.
Note that “radiotherapy doctor” should be “radiologist”. I couldn’t think of the right word at first.
Barbara, so much good information and tips here! I am very sorry you had to go through all that. Sending you best wishes for you to remain cancer free!
Barbara, perhaps when you wrote you referred your team to “Whitney Houston” site you were intending to refer to “Whitney Dafoe” site (Janet Dafoe’s and Ron Davis’ son who has been public about his condition) about more severe ME?
Wishing you the best throughout this difficult time. You have determination and strength and a lot of people praying or thinking positive thoughts for you. Take care
Thanks, Faith!
That’s incredibly brave, to make this know to all of us in the first place, Jennie.
With you in my thoughts and with my heart.
All the important things have already been said by others.
If you wish I’ll share this revelation further.
Hugs,
rob
Thank you, Rob. You may share this blog if you like.
Thanks yo so much Jennie.
Take good care, all will turn out well. Indeed an accident of luck that it has been discovered rather soon.
At least hopefully they are aware of ME in the hospital: in that case you’ll be treated very well, even pampered. That’s the big difference…
Dear Jennie,
I’m so sorry to hear this, on top of your other problems. I too would be terrified, with the addition of the ME/CFS problems!
I wish you lots of strength and the best possible outcome!
Susanna
Thank you!
Very glad it was caught early, Jennie. Best of luck with the prompt treatment!
When the ME study on WASF3 protein came out, noticed that WASF3 is already well-researched for its role in cancer metastasis. Because, ya know, research connections are the FIRST thing on one’s mind with a cancer diagnosis. Right?
Much love and hope for recovery.
Praying for you this week and beyond, Jennie. Thank you for sharing your story. It won’t be easy and I’m sorry you’re faced with this but, after following you all these years, I know that you know how to listen to your body, advocate for yourself, and reach out for the support you need. You’ve Got This Jennie!
I’ve had ME/CFS and FM for 37 years now, most of my adult life. I lost both of my sisters to breast cancer and then I, myself, had breast cancer and a bilateral mastectomy in 2013. I’m now ten years cancer free. The lessons I learned from living with ME/CFS helped me greatly through the cancer journey, especially listening to my body, pacing, and asking for help when needed. You’ve got this, Jennie and lots of people are cheering you on. May you find comfort in that.
I was just wondering today … how is Jennie? and thinking it had been awhile since I had checked in, as I do sporadically. So sorry to hear of this latest hurdle in your journey but sending supportive thoughts and best wishes. You are an amazing person and an inspiration to so many of us.
Oh, Jennie – I’m so very sorry to hear this. You did NOT need anything else to deal with! I’m glad it was caught so early and that the prognosis is good, but especially given your mom’s history, I know it’s a lot to deal with.
Thinking of you and wishing you the best possible outcome –
Sue
Live with ME/CFS
Dear Jennie,
I’ll be thinking of you this week as you deal with this, I hope, permanently.
I’ll let the people with ME who’ve done that give you what information they can share, and just assure you that you should not worry, you can write about it or not exactly as you feel comfortable, and please take care of yourself and don’t overburden yourself. This is a good time to be self-centered!
We care – but you will have to say what you need. You are not responsible for people’s reactions – this is your time to accept comfort and best wishes. Some people just don’t know how to behave, but you don’t have time right now for that – it’s not your job to educate them, just to get better.
Looking forward to you being more yourself when you’re ready. First things first.
One of your supporters from way back.
Love,
Alicia
PS Let me know if you need reading material and would like some of mine (see website)
Jennie, so sorry you face this now. Wishing you strength & courage with best possible care & outcome.
Jennie S., sympathy & support for great care & successful result.
Dear Jennie! I am so sorry for you!
Wishing you strength & courage, and the best possible care & outcome.
Jennie, I’m also wishing you strength and courage, may you be guided and guarded through this.