Ductal carcinoma in situ
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@RR @JEC I was diagnosed with invasive DCIS Dec last year following my first mammogram! I had no node involvement. I went into my first appt with the surgeon head spinning as I was sure I would have to make the decision of lumpectomy v mastectomy v bilateral v radiation v chemo!!!! SO much to take in when it is only early in your journey & there is still so much I don't know BUT you only learn about what YOU have to deal with. Everyone's cancer is different, different areas, sizes, risks so each case will be taking into consideration by your surgeon.
When I went into the appt, my surgeon looked at the scans, looked at me & then SHE made the decision for me...weight lifted. As my DCIS was lower in my breast, she would do a lumpectomy & fill in the gap with tissue from under my breast. She did a wonderful job, clear margins so no further surgery. My team recommended me have 16 doses of rad as a precaution as my DCIS was invasive & it would make sure any left-over cancer cells would be zapped! I was happy with that as the treatment was shorter than normal. As my DCIS was in my left breast, I also had to do Deep Inspiration Breath Hold during my rad treatment which basically means you hold your breath for up to 30 secs to get your heart out of the way of the rad beam. It sounds scary but it isn't. You have total control over the beam so if you have to take a breath, the beam stops. It is just another way of safeguarding our body during this treatment.
Also, I was recommended by my rad onc to wear a "plastic skin" over my chest area called Mepitel which they stick on you for the length of the treatment plus the 2 weeks after as the symptoms peak 2 weeks after you finish the rad. The Mepitel is waterproof so you can shower & as your skin is covered it protects your skin from the beam & it also stops any reddening/blistering & you don't get any friction from your clothes. It is a bit fiddly & the rad nurses will see you every day to make sure it hasn't lifted or bubbled but they are used to it. Anyway, I had it on for 5-6 weeks & I had NO reddening, blistering of the skin & you wouldn't have even known I had treatment as both sides of my chest looked the same colour. You also don't need to use any creams during treatment as the Mepitel protects you but I still used calendula after I took off the Mepitel just to keep it supple.
I did get a little fatigued but still tried to keep exercising, walking when i could, to keep the fitness up so try to do that if you can but if you need to rest or have arvo sleeps then do it as everyone is different. I only had a short course of treatment so that is probably why I didn't suffer a lot. Eat well & drink LOTS of water. You will need to wash with fragrance/perfume free body wash, I used Aveeno as it is gentle on your skin. I got on really well through my rad & now I am just having followup visits with my surgeon as I don't need any drugs or chemo. let's hope you both have as "good" an outcome as me.
You will hear a lot on this website & I have been blessed with the advice & support from these ladies here. One thing I have taken on board early in my diagnosis, was to only worry about what I KNOW & not what MAY happen. Your goal posts constantly change & you may end up worrying about something you may never have to encounter. Use your energy wisely to focus on what you need to. I worried early about every possible scenario but my surgeon has made all my decisions for me & I have been happy with those she has made so the worrying about mastectomies/chemo or further surgery, never eventuated for me & I hope they don't for the both of you. One step at a time, keep breathing & know we are all here for you & will help any way we can. Hugs to you both xx2 -
Hi @RR and @JEC
Good outcome with radiation here as well. I had 30 rounds, breast, nodes under arm and chest nodes as well. The last week was a boost week aimed at where the breast tumour was. They nuked everything. Skin held up well until the last week. No mepitel on offer where I went unfortunately but Moo Goo, Manuka gold honey cream did well. No fatigue, no real issues. Just a pain in the ass driving there every day. As @Anne65 has said, the goal posts move and you just have to focus on whats next in line. All the best. xoxoxo1 -
Hi everyone,
I have moved from DCIS to invasive within a week. I had a biopsy last week and MRI, CT and bone scan yesterday - exhausting is an understatement! I have an appointment tomorrow with my surgeon to ascertain where it has spread to. What a whirlwind ......0 -
@RR Please don't panic yet. I also had invasive DCIS as mentioned above in my story & you know how well I got on. If caught early you could have a good outcome like me. I know my words won't help your anguish but i do remember how I coped early on & I remember my sister telling me how proud she was of me & my handling of it all & how strong I was. I told her I was only focusing on the cards that had been dealt to me & I wasn't panicking about surgery/treatments that may never happen. i do that through life as well. If you can't change it, then you have to deal with it the best you can & move on accordingly. Don't panic about things that may never happen as that worry eats you inside & for no reason sometimes. You have to be strong & you will come out the other side even stronger. You will be amazed at how you will find strength through this & we are here to help you. take care & good luck tomorrow. I know you won't sleep well tonight but may i suggest taking someone with you to the appt tomorrow or tape it as you will hear a lot of info & 2 ears are better then 1 especially when your head is already spinning. Take notes & write down questions to ask. Loads of Hugs & let us know how you go xx2
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Thank you
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Hi @JEC the side effects of radiation just like with chemo vary from person to person, some people fly through it without a skin reaction or fatigue while others can get quite a bad reaction needing a break from treatment, there is just no way of knowing unfortunately. The main side effects are localised to the area so a skin reaction, loss of armpit hair on that side, possibly a sore throat if your nodes are being treated and then there is the fatigue. The side effects typically begin about 2 weeks in and peak 2 wks after as it is a build up effect. There is usually 25 treatments to the whole breast and then 5 treatments to a ‘boost’ area which is where the rumour was. There is a hypofractionated regime of 16 + 4 but this is not suitable for all women. Left sided patients may be asked to hold their breathe for treatment. You will be given a few permanent tattoo dots at your planning session. Care is taken to minimise dose to heart,lungs,ribs,spinal cord etc.
I could go into lots of technical details all day haha.
Best wishes and always happy to answer any questions xx1 -
Good luck with your appointment today - take someone with you if you can. It's always good to have another pair of ears.0
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Chemo and full mastectomy for me! It wasn't what I had planned, but better than it could have been.0
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@kmakm @Finch - thank you! I know it probably is strange, but I am really only worried about the chemo - not losing my breast or surgery etc. I just don't want our girls to witness what i had to with my own mother. My husband and I are going to talk with the oncologist the pros and cons of 4 month intensive versus 6 month, as he isn't too keen on watching me be smashed with toxins to where it is tricky for me to function - I actually tend to agree!0
