Fatigue, Depression, Guilt about DCIS - Help!

Lily, and all of you, I have been following this thread very closely, and I admire *all* of you so much for making hard decisions, no matter what they are.

I have also been reading closely about your treatment decisions, esp rads. I see an RO tomorrow. My grade of DCIS was low to intermediate grade, and very small, lump. came back clear of any cancer. I am not sure how I feel about rads. I started out not wanting to do it at all. Came to terms. Now I am not so sure if its worth it since my DCIS was so small. But then on the other hand, I worry about making the wrong choice and having a bigger issue down the road. The biggest factor IMHO, that I have to consider is my age. I am "young" --45 yo, so I am plan on having decades more living to do.

I guess that I will know more after my appt tomorrow. But this thread has given me a lot of different perspectives and I appreciate that so much.

Thank you all for sharing your experiences and knowledge on this site. Also, thanks for letting me vent about my first anesthesiologist's  comments, I had really not thought about it for a long time, until I had a new occurrence of DCIS recently, surprised me that I still felt that strongly about it, but I feel much better after being able to vent about it here : )

My first DCIS experience was high grade ER/PR negative, so had lumpectomy with rads. Second DCIS was in the other breast, medium grade, had lumpectomy with good margins, so decided against rads. I had been given the option on rads and decided since it wasn't high grade, it was a small area and they had good margins and I had very low risk factors, that maybe rads would be overtreatment, so hard to know what to do. Now, just over 2 yrs later I have two new areas of DCIS in the unradiated breast. I told my BS, I guess I should have done those rads,  her response was, not necessarily, could have done the rads and still had a new occurrence. So, this time I am going to have BMX with immediate reconstruction. Just got my surgery date today for surgery in about 3 weeks.

Lilyluv,

I've been wondering how you are feeling?  Are you any less depressed or fatigued? I hope that as time goes by, you'll be feeling better!

Lilyluv,

I'm glad to hear you're feeling a LITTLE better.  Did you begin to feel more tired after radiation was over or had you been feeling tired during the last weeks?  I hadn't realized that the fatigue, "burns" and SE's sometimes don't peak for 7-10 days after radiation is over and here I am two treatments of boosts from the finish line.  (Learned all this here.)

My doctor, nurse and techs hadn't mentioned this and, in fact, more or less told me that now that the whole breast radiation is over, I'll begin to heal.  Of course, I'm not surprised that they had held back this information.  I like them a LOT, but they also didn't mention ahead of time that the last five treatments would be boosts. The tech handed me an appointment card for a sim (for the boosts) and started to explain what it was about.  I told her I knew about boosts and she was surprised I knew - said that sometimes women got very upset at something else happening.  SO, I think their philosophy at my clinic is to hold off on telling some things (like fatigue increasing or skin issues still peaking) until the time comes.  I'm glad I'm reading here, or I wouldn't have been so prepared.  BTW, I'm not yet very tired - but I guess the next couple of weeks will tell.

Thank you for posting this!  I have had the dubious distinction of going thru DCIS twice, and it is still easy to feel as if I'm a bit of a fraud to say I've had breast cancer, despite all the treatments.  I think of it as if having a time bomb in your chest.  Even if there's only a 30% chance of exploding, would you leave it??

So here's my story.  My 1st DCIS was found on my very 1st mammo. in 2002  After a very uncomfortable 4 hour stereotactic biopsy and a 2 week wait, I found had DCIS and LCIS in my right breast. I don't recall being told of grades or er/pr status.  I was rushed off to a surgeon, and had a lumpectomy, followed by radiation. 

Fast forward to 2013.  I was diagnosed with DCIS in the right breast again, but in a new spot. This time, I consulted an oncologist/ surgeon, who was just wonderful.  She went thru my pathology and family history very thoroughly. Since I had radiation, I couldn't have lumpectomy + radiation again.  We decided on a double mastectomy with a TRAM flap reconstruction after an MRI found a suspicious area in my left breast. The spot that found by the MRI turned out to be benign, but the final pathology report showed, I had pre-cancerous cells in my left. So I guess my decision was the right one.  My surgery was just over 6 months ago. I still have discomfort in my chest and abdomen, and a bit of fatigue 

But most importantly, my time bomb is gone!

That must be such an odd state to be in Lilyluv - as if you are disconnected to what is going on around you. I haven't experienced that fatigue, not having gone through radiation. It seems like it would be very difficult to go day after day in that state. I hope your fatigue will lift soon:)

I think it would be scarier to not know what the side effects are. I didn't realize lymphedema was SE of a SNB until after the procedure and it freaked me out know that was a possibility. Luckily I haven't had any swelling, but I am still numb under my arm and down half way to my elbow. That in itself was very upsetting to me at first, partly because I didn't expect it. But then on this path I have come across many things I didn't expect:) I think the hardest part is feeling so vulnerable physically. Even when it is just a small thing like not having sensation under my arm - it is a loss of part of my physicality.

I had to post that b/c my cat (real name Heather, alias, Catzilla) is all over me, my keybd and tablet. She has absolutely no concept of personal space or the words Get Down!

Rads appt:

The rads nurse was a doll, very reassuring even as she had to read all of the potential SE's beofre I could give consent. (Loss of feeling in your arm/hand?! Eep! She said that she had never seen that in all of the years she has been doing this) RO- as soon as he walked in, I could tell my DH was shutting down.He doesn't want me to do rads, at all, and very firmly feels it would do me more harm, as in would kill me. Literally kill me. *sighs* RO gave me two schedule options, 4 weeks at a higher dose or 6 at a lower dose. Either way would be the same amount of rads and the same outcome of success. I am leaning toward the 4 week option, get it done. If I can't tolerate the higher dose, then I am pretty sure I could drop down to the other schedule. I'll ask tomorrow.

Unfortunately, DH and I are barely talking b/c every time the topic comes up, it ends up with both of us yelling.:(

Lily, I guess I can see why doctors don't always want to mention any and all SE's that may occur - it might be overwhelming to the patient (or her husband, Faerywings) - and possibly there's only a slight chance of the patient getting them, so sometimes they may just want to keep the anxiety level down and just be there for them if the situation arises.  On the other hand, as you said, it's really important to be aware of the SE's that could occur after treatment is done, because fatigue might be thought to be from another cause - as well as the cough (pneumonitis).  My last boost is on Tuesday and I'll be having a meeting with the nurse and doctor.  I think they'll feel comfortable at that time telling me everything I need to know.

I agree that some people just don't want to know everything.  My sister and one of my friends agree that they fall into that group. 

Faerywings, We should probably have a thread here to dispel some of the total fear that the mention of radiation brings to patients and loved ones.  After all, we've tried all of our lives to have as little radiation as possible and here we are, having to have it every day.  I've felt like that myself, questioning dentists as to the need of more x-rays, worried when I was told I'd need magnifications (little did I know where that would lead).  The experts just feel that the benefit outweighs the risk of not having them.

I've thought of a few ways to try to help your husband.  What helped me was knowing that my mother had radiation after her mastectomy in 1978.  In those days the machinery and expertise was much less advanced than it is today when it's all carefully planned by a team of RO, physicist, dosimetrist.  I always think that if my Mom had it and lived for 33 years (until age 93) and with no recurrence of her invasive cancer or effects of radiation, even with the equipment and planning of that time period, then certainly we, these days, are exponentially safer.

You also might find a profile here that shows that someone who hadn't had any treatment got DCIS again - and THEN opted for treatment.  Or, you could show him all the profiles of so many women who have had radiation treatment and have done well and moved on.

I think of it as a "treatment" that I have to go through to be cured, such as when my son showed that he had antibodies against TB in his blood (he had sat beside a man who was coughing terribly on a bus in Morroco) and he had to make the choice of whether to risk coming down with TB or undergoing treatment.  He chose treatment and then could think of himself as TB free. 

You seem very worry free about it, so hopefully your husband soon will feel more at ease, too.   

Faerywings, sorry that your husband isn't in agreement with you on the radiation, but I'm sure it is because he is afraid of the affects of the radiation to you. I had DCIS on the left side and had radiation after lumpectomy, 4 1/2 years later and that side has been clear on every mammogram. Then I had DCIS on the right side, had lumpectomy and decided not to had rads, 2 1/2 years later I now have 2 new areas of DCIS and I had very low risk factors. Because I have already had one lumpectomy on that side, with 2 new areas I am now going to have a mastectomy because having the 2 new areas removed would not leave much behind. So now, yes, I think I should have done the rads last time. If you want to have the radiation treatments you should, it has to be up to you, what you feel is best for you. Have you asked your husband how he would feel if you don't do rads and then the DCIS comes back? Some women don't have rads and are just fine, it's a hard decision, but it has to be yours.

I am so glad I found this discussion board.  All of the posts summarize how I have felt through this whole journey.  When people learn that I have been diagnosed with Breast Cancer the first thing they say is "I am so sorry. I hope you are ok" then when I tell them that it is DCIS and non invasive they say that I am so lucky that if you have to have cancer it is the best one to have.  Part of me feels very lucky but the other part of me wants to know that it is ok to feel scared, sad, anxious, etc.  I keep it to myself and tell people that I know I am very lucky--no chemo just surgery, radiation, and tamoxifen for the next 5 years.  Getting ready to start radiation on April 1st.  My time at the gym keeps me going.  Hope I do not get the fatigue associated with radiation.  

Hi, Faerywings!  I'm sorry to hear that you and your hubby are getting in conflict because of decisions.  I know, it's really hard; I've been there, too.  Deciding to have double mastectomy right away was not an easy thing as well.  But, we must understand how that the male hormones work differently than ours.  For them to disagree without reason is also a sign that they are in fear and, at the same time, they care too much.  The only problem is that they just can't seem to accept the fact that, one way or the other, they have to show those feelings and be open about it.  I hope all will go well with you both throughout your journey.  Not that mine is over.  I still have my ups and downs with my husband, esp. now that my last path report showed positive margins so my surgeon has to go back in again.  But, after all that's been said, my hubby has no choice but to take over my place in the kitchen, driving my daughter to school and her other activities, and all other mom-stuff at home, while I'm still recovering from my procedure.... so, yeah-- I'm just taking it one day at a time.  Yesterday, he even drove me to the salon for hairwash, cut, and color. [Though, I think he was just getting tired of washing my hair, combing, and putting it up for me -- (: ]

And yes, Lilyluv, I agree with Faerywing's food suggestions.  Most times, I just steam or microwave for 1 minute or less a small bag of spinach and sprinkle crunchy garlic.  Or with fish or chicken breast, I have tossed sesame salad.   For breakfast, I also love Special K-cereals or oatmeal, and I add blueberries in them.    

My oncologist has referred me to a nutritionist, although I have yet to make an appointment.  But, in general, she has suggested to stay away from sweets and animal-hormone-fed foods as cancer feeds on them greatly.  We have to eat lots of leafy vegetables, and load ourselves with berries (anti-oxidant and very good for the immune system).  Stay away from beef and pork.  More fish (but watch out for farm-raised ones, and the ones high in mercury).  Brown eggs are best, along with organic foods.  Prefer almond milk than cow's milk.  Other nutritious source for us are citrus fruits, grapefruit, and watermelon. In cooking, grill is best; also poach or blanch.  

I hope this helps.

Happy Monday, everyone!

Another snack type food idea-- kale chips! OMG so addicting! Wash and dry kale leaves. tear the leaves from the stalk. Lay them on a cookie sheet, drizzle with olive oil, sprinkle with sea salt. Bake for 10-15 mins until they are crispy. Yum!

lettie, when is your next surgery scheduled? Good luck!

Futuregolfer- welcome! I am a newbie here too, and this forum has been so informative and supportive. Good luck to you!

Hi, Faerywings!

Yes-- KALE Chips!!!  Thanks for the step-by-step recipe.  A friend of mine made it for me 2x already, the second one I observed, but still didn't get it right.  I'll try following your instructions.  Truth is, I'm not really good at baking, where instructions are rigid to the letter; otherwise, food will not come out right.  Actually, it's my husband, this time, who will make the Kale chips for me since I'm still restricted to lift, push and pull with my arms (like putting the baking sheet in the oven and opening the oven door I presume)-- maybe he'd be better-- LOL!   

Without the positive margins, my second surgery would be in 3-4 months for the TE/implants swap; and with the positive margins, my breast surgeon and oncologist agreed that it is still best to keep that schedule also to shave off more skin and ensure clear margins.  But, this had to be cleared with my reconstructive surgeon.  In fact, he called me the other day, and said that he would have to talk to my breast surgeon to know exactly what she needs to do.  I am guessing  that, with more skin to shave off, my reconstructive surgeon is concerned that he might not have enough to work with for my implants.  

This afternoon, I go to my breast and reconstructive surgeons to find out more about their plans. Hopefully, they have talked by then and have agreed on something.  Otherwise, again, I am back to the waiting game.--  

Hi, Lilyluv... Faerywings!  The answer I got today was probably the fairest I could get. Not that great, but I guess I should be able to live with it.  My surgeons were able to talk and according to my reconstructive surgeon, as far as it was described to him by my breast surgeon, her shaving off the tissue should be manageable for him on the second surgery.  BUT, (he said emphatically and probably also just being safe, which I don't blame him as the 2nd surgery is really his surgery), if anything changes on my breast surgeon's plan, then we would have to re-evaluate as the date draws near.  As of now though, we go as usual... as originally scheduled and planned, since the main goal of my breast surgeon, he said, was to give my body time to heal so she may have more leeway to shave off more skin as may be necessary at that time, and which he also agrees.  

So, I guess, given that, I really have no choice but to patiently wait and, in the meantime, just focus on helping my body heal as well and get ready for the 2nd surgery.

My first shot of saline solution was done today on both my breasts-- a little sting and coldness inside, and that's it.  I was warned of more numbness on my chest, and a little more tightening whenever I move, as the local anesthesia wears off.  And so far, nothing yet, except that I fell asleep right away as soon as I got home.  Probably also due to Tylenol I took prior to the doctor visit just as a precaution on the procedure.  

Overall, I guess I should be glad.  Except for one of my drain holes kind'a healing funky-- like there's a little hump and the skin didn't close flat, the shot of saline solution should tell me that my body is cooperating with the timetable my reconstructive surgeon has set.  Although, I am still restricted to do any exercise (except for very simple arm and shoulder exercises), I can now start driving and lifting/pushing/pulling with my hands or arms, but only less than 10 lbs.  In the mean time, he gave me some kind of special tape-- a sealing sheet, I think they called it-- which I have to cut just enough to cover the drain incision site and tape on it for several weeks; and it should help my drain incision site heal better.  In 2-1/2 weeks, I go back to work, and he said, by then, I should be ready to resume my normal activities and exercises.  Yey.... can't wait!... Going back to work and zumba will hopefully help me cope with the waiting game better.

Until next time, DCIS sisters...

Good night.

P.S.  By the way, Lilyluv, don't worry, I understand about your not liking kale.  It actually has a bitter taste, and I also did not like it at first, esp. when I first had it as salad.  But somehow, the kale chips appealed to me.  It may be a lot of work for you if you try doing it at home, esp. for something that you're not even sure if you will like.  I think they have kale chips now in some groceries; maybe just try a small bag.  As for garlic, I was not a big fan either; but my husband loves it, so I guess I learned to love it on my food as well. But yeah-- you are enjoying other healthy foods... and that's what matters. -- (: