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Hi Everyone - Newly diagnosed breast cancer

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Charper on Dec 26, 2019 11:01 am

Merry Christmas everyone (day late lol) BonnieCEssjayashconDaveNitscheTen_minutesKims1961Runner Girlmc2‍  and everyone else that has been so kind. I had a nice relaxing Christmas eve and Christmas day with my son and husband and I hope everyone else found peace and love. I am healing ok I guess, my armpit is a bit swollen and numb lol, pain is manageable without any pain killers which I am glad. Trying to keep the "waiting for pathology" out my mind and praying for the best. I have a question for you guys...about a year ago I started perimenopause, hot flashes...the whole nine yards. So I searched for a natural way to help and found this natural aid called "menosense" so started to take it.  I quit taking it around September since my hot flashes quit and then I got my diagnosis and my period at the beginning of  November.  When I went to see my surgeon she asked if I was taking any vitamins or supplements so I told her...she was concerned and told me to quit taking it and I also talked to my Dr and she informed my that alot of these "natural" supplements contain hormones and she did not think it caused my bc.  I am very annoyed since women who are suffering from hot flashes and sleep interruptions due to perimenopause or menopause look for relief but have no idea that it could feed a not found bc. My question to you guys I would like to write a letter or make women aware...any suggestions?  Anyways...sending love and hugs.

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Essjay on Dec 26, 2019 9:00 pm

Hey Charper‍ good to hear you are doing well.

There is quite a bit of evidence that hormones increase the risk of come breast cancers - the pill, HRT, etc. But women have to decide what risks they are prepared to accept. Menopause is difficult to cope with for many women, and the benefits out weight the risks in many cases. Be prepared to be told that you can’t take any hormones now as you are high risk for future breast cancer. There are other treatments for hot flushes though - clonidine for example, which I used to treat migraines as well as terrible night sweats, sleeplessness and restless legs. Worked a treat. My oncologist told me that some local estrogen products such as the Estring are suitable for me to maintain my vaginal health, even if I can’t take HRT. I haven’t explored this with my doc yet, I’m a bit doctored out at the moment!

hope the swelling goes down over the next few days - how are the range of motion exercises going? 
Essjay —————————————————————————- Triple Negative Breast Cancer survivor Diagnosed July ‘18, Surgery October ‘18, ACT dose-dense Chemo December ‘18-April ‘19, Radiation May ‘19- June ‘19, Zometa to 2023

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by ashcon on Dec 27, 2019 7:50 am

Hi Charper
So glad to hear of your peaceful Christmas break, and of your recovery! 
You ask a great question, and raise a good point about the possible need for more awareness on this topic.  Essjay‍ also makes some great points about benefits outweighing risks regarding hormone supplements or therapy in some cases for some women. 
In your case, the supplement you took may or may not have been a factor, especially (say) if your pathology report comes back as indicating your BC was negative for that hormonal factor (ER or PR)  or even comes back as triple negative. 

I applaud you for considering this as a way to help other women at least become more aware of the potential risks of things like this! 

Thanks for keeping us posted - I do read all your posts  even if I don't respond to all of them.
​​​​​​​Enjoy the rest of your holidays! 

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Runner Girl on Dec 27, 2019 10:34 am

Hello Charper‍ ,

Glad to hear your healing is coming along and that you had a peaceful Christmas time.

I applaud you for wanting to write a letter to warn women.  But there's more than just the hot flash herbals that can cause problems.  I learned from my oncologist that there are many other things we are using that are estrogenic also - like Cold FX.  My cancer is ER+ and HER2+ so it is estrogen driven.  The oncologist has given me a list of all of the supposedly safe herbal supplements that are estrogenic and that I MUST avoid.  The other thing to avoid are Parabens - they can act as estrogen in the body and have been found in breast cancers.  

It's quite scary the number of "good" things out there that really aren't, depending on your situation.

Runner Girl

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Charper on Dec 28, 2019 11:31 am

Good morning EssjayRunner Girlashcon‍ I think my biggest thing I have a problem with is that when women are struggling with perimenopause or menopause they are usually looking for relief but are unaware of the possible effects of hrt or herbal alternatives..and usually not made aware until breast cancer is introduced into their world. According to my biopsy my bc is HR/PR + HER2- i am not if that will change with the pathology report?  Anyways trying to stay busy trying not to worry about the pathology report results...hoping and praying for good results. Sending love and hugs.

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Charper on Dec 29, 2019 6:47 pm

Hi all BonnieCEssjayRunner Girlashconmc2‍ and everyone else, hope you are all well. I am healing well but I cannot stop thinking about the pathology report. I know it is weeks away and I cannot change that but the waiting is crazy. In the quiet times my mind goes to the worst places and I try to keep busy but the what its are always waiting to bite me in the bum. Feeling a little sad. Sending love and hugs

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by mc2 on Dec 29, 2019 7:19 pm

Hi Charper‍ - waiting is so though!! Hang in there and keep focussing on healing and distractions  when you can, and let yourself ride the feeling bummed moments.  I just checked my post-op pathology report and it actually said same markers as in the biopsy patology report  but percentages were sligthly differents.  More importantly, it was also added that the reader should refer to the prior biopsy pathology report for those ER PR HeR as a priority.  So I would not expect those to change.  What will be "new" in the next report is the actual results of the tumour removal, whether margins were clear, and whether lymph nodes were affected.  And that part welll... you have to wait and trust that the surgeon did his job well and hope for the best. Hope you are getting some R&R.  I find the Holidays tiring because I find people well meaning but ackward and my reaction tends to be discomfort regardless of what they say/do or do not do. So I have been hiding a bit and, surprisingly, not even feeling guilty about it ;)  Post radiation fatigue got better in a week or two and the rash was very minor.  

It is hard to beleive that three months ago I was waiting for my post-op pathology report and googling myself out of my mind.  I feel further along the healing continuum now.  You will too.  The operation was a big step - you did it!!!  keep it in mind.  Hope this helps a bit.  Sending big hugs.

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Charper on Dec 29, 2019 9:58 pm

Thank you mc2‍  your words are comforting. I worry about lymph node involvement...i am so scared of that. I read all this stuff (which I really shouldn't be) but I really want to survive this and want see my son graduate and get married and grow old with my husband...i hate these kinda days. Really kinda a poopy day...sending love and hugs.

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Essjay on Dec 30, 2019 8:49 am

Hi Charper‍ your worries about the pathology are understandable. You will have the answers you need soon enough and there’s nothing you can do to hurry them along. Keep healing and distracting yourself - enjoy time with your son, do some nice stuff for you. The days will pass and you will soon have your appointment and hear what the next phase of treatment is. You can do this 💪🏻

best wishes Essjay xx
Essjay —————————————————————————- Triple Negative Breast Cancer survivor Diagnosed July ‘18, Surgery October ‘18, ACT dose-dense Chemo December ‘18-April ‘19, Radiation May ‘19- June ‘19, Zometa to 2023

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by LPPK on Dec 30, 2019 9:09 am

Good morning Charper‍   I remember being in the waiting faze and just hating it.  I latched onto a few words in a post that helped me..."go with what you know right now". Don't stress about the what ifs.  I also wrote down my mood and feelings in a journal and that helped to get the whirlwind of thoughts out of my head.
Focus on your 2020 intention of getting better and living life to the fullest..
 

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by ashcon on Dec 30, 2019 9:32 am

Hi Charper‍ 
​​​​​​
Wise words from both Essjay‍ and mc2‍ .
I think lymph node involvement gets a lot of bad press based on antiquated stories from the 70's and 80's.
Yes, it means the cancer has spread beyond the site of origin, but that doesn't mean it's not just as treatable as if there was no lymph node involvement. 
I had positive lymph nodes at time of surgery, then more flared up while I was doing chemo. 
A second surgery after I was done chemo removed the remaining nodes. Good news:they all came back negative for cancer, which means the chemo did its job. And did it well.  I'm coming up to 2 years of being in full remission (touch wood!) 

With that said, everyone's case of breast cancer is different, I know.
I do hope your nodes are clear, but if they are not, please know that your doctors have a great handle on courses of treatment. Especially for hormone positive breast cancer. 
Reminder.. You came into this game not being prepared at all for being told you have cancer. And look at how well you have accepted the diagnosis and treatment plan so far!
You will handle this next step just as well. 
And the step after that. 

Thoughts about possibly dying from this disease are something we all think about.
When I have those thoughts, I entertain them for a bit, but then I put them aside and tell myself "today I feel fit and strong. And at my last follow up appointment the doctor gave me assurance that there is no indication that it has returned or spread."

The only time you will have to worry about not seeing your son graduate and marry, or not growing old with your husband is if the doctors say "we've exhausted all options and there's nothing more we can do." 
And you are so early in your treatment. You are nowhere near that point.

One day at a time  one test at a time, one appointment at a time, my friend! 
 

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Charper on Dec 31, 2019 10:13 am

Thank you ashconEssjay‍  mc2‍  LPPK‍  you are so inspiring and confronting, I am still amazed at the pure love and support I feel from you guys and all the other amazing people on this site. I am doing better today, better sleep last night, feeling more like myself. I am trying to focus on what I know and just trying to find comfort in that.  It funny I always feel sad around new years even before bc, but this year it is different I am happy to be leaving 2019 in the dust but scared of 2020.  I know I shouldn't be but there are so many unknowns upcoming with the bc and a ton of other stuff happening in my world. I know one day at a time. I do want to wish everyone a happy New Year and sending love and hugs.

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Charper on Jan 6, 2020 10:33 am

Good morning ashconBonnieCRunner Girlmc2LPPKEssjay‍ I hope the first days of the new year have been good. I have been keeping busy, taking Christmas decorations down and work.  Tomorrow I see my surgeon tomorrow not sure if there will be any pathology results...kinda hoping there is so I know what is next. Trying to stick with what I know for sure but the anxiety sure has a way to find it's way in.  Hope you all are well, sending love and hugs.

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Runner Girl on Jan 6, 2020 11:03 am

Charper‍ ,

I hope the surgeon will have your pathology report ready so you can get on with things.  Try to keep busy today so your mind doesn't get too worked up.  

Sending good thoughts your way!

Runner Girl

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by mc2 on Jan 9, 2020 9:34 am

Charper‍  wondering how you are doing.  Let me (us) know when you are feeling up to it.... no pressure.

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Charper on Jan 10, 2020 10:40 am

Good morning Essjay Runner Girlmc2ashcon‍ , so the follow-up appointment on the 7th was good news!  The surgeon got it all and no lymph involvement such an amazing relief, happy, happy, happy!  Looks like I will only need radiation as a preventive and of course the forced menopause also.  My suregon said it could be amout a month before i get a call from the cancer center to start radiation.  I also got a call from my other Dr from the breast clinic and she kinda dampered my happy saying they may order another test on my tissue that has to be done in the US to make sure that I will or will not benefit from a small round of chemo....but I got another call yesterday from the women's breast clinic to get on me so I asked " have no idea who orders this additional test", she said that my suregon would have ordered, but she did not since the margins were clear, tumour was 1cm and no lymph node involvement. So I am going with what I know, the cancer is out and radiation as a preventive.  I hope all of you are doing good, sending love and hugs.

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Wendy Tea on Jan 10, 2020 10:54 am

Charper‍  Amazing news! Congratulations! I am so very happy for you! You are on the home stretch!

Cheers!
Wendy Tea 

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by ashcon on Jan 10, 2020 11:18 am

So great to hear this, Charper‍ ! What a wonderful way to reclaim 2020 - and beyond!

Ann (ashcon) 

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Runner Girl on Jan 10, 2020 11:29 am

Congratulations Charper‍ ,

That is fantastic news!!  Thank you for sharing with us.  

Runner Girl

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Essjay on Jan 10, 2020 3:03 pm

Hi Charper‍ OOh that is good news, what a great start to the new year. I am so pleased for you!
So at your radiation appointment you can expect to be examined and the radiation oncologist will go through the plan - how many sessions you will have, whether you need boosters to the tumour bed, and what the benefits to you are of radiation based on their modelling of your tumour information. They'll advise you on cream to use - start before your radiation sessions and go through potential side effects.
Then you will have an appointment to get all the angles lined up for treatment and you may have small tattoos on your chest, and then they will schedule you for your radiation sessions. ITs like a well-oiled machine in radiation - you turn up at your allocated time, put on a gown, go in and they are prepped for you and it takes very little time. The first session takes the longest but once they know how to set up the bed in line with the machine it will be smoother next time.
I found radiation pretty easy after chemo. I started back to work part-time after almost six months off, and I returned to my happy place (aka the gym)!
Essjay —————————————————————————- Triple Negative Breast Cancer survivor Diagnosed July ‘18, Surgery October ‘18, ACT dose-dense Chemo December ‘18-April ‘19, Radiation May ‘19- June ‘19, Zometa to 2023

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by BonnieC on Jan 17, 2020 7:29 pm

Hi Essjay‍ 
i had my radiation planning appointment yesterday. I found out today that I must have 24 treatments with a boost. I was a bit disheartened as I was hoping to get through this quickly but I understand the reasoning behind spreading out my treatments.  Just making my mountain a bit taller to climb. 

My oncologist has told me NOT to use any creams until it’s determined that I have a rash or skin irritation. Is this common? What is other people’s experience?? I have only read that people recommend using the glaxal base cream before and during very liberally.  I also talked to one of the radiation technicians who said all the radiation oncologists recommend this approach at our local cancer centre. 
I’m also curious what are others experiences with radiation fatigue for a longer radiation treatment schedule. 
Also wondering if there is any benefit to having my appointments in the morning or afternoon? I plan to work during treatment so I’m leaning towards mid afternoon. That way I can go home after as opposed to working all day after a treatment.  Thoughts??? Any advice from those who have done radiation and worked during. 
Thanks all ;) 

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Essjay on Jan 17, 2020 9:53 pm

Hi BonnieC‍ I guess different centres have different approaches but I used a glaxol based product - bought so much of it I’m still using it 7 months later!
once you get started on your sessions they will go quickly and the staff will be counting down with you!

The fatigue builds up - you won’t notice anything the first few weeks it’s later and after treatment finishes. I was fatigued from chemo and didn’t notice it being much different. I was working a couple of mornings and I would go to the gym each day - exercise was my medication for fatigue and it works somehow!

My treatments were all over the place in terms of times - the hardest were late afternoon - I was so tired by then and had to drive home an hour. My best time was early afternoon - I could work the morning. ( I did 3 mornings a week), or go to the gym and do errands, then have my treatment and go home.
You can always try a time slot, see how it works and ask for something different if it doesn’t work. You will likely see your radiation oncologist once a week and so your appointment that day will align with your clinic appointment.

Hope that helps Essjay
Essjay —————————————————————————- Triple Negative Breast Cancer survivor Diagnosed July ‘18, Surgery October ‘18, ACT dose-dense Chemo December ‘18-April ‘19, Radiation May ‘19- June ‘19, Zometa to 2023

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by ashcon on Jan 18, 2020 6:56 am

Hi BonnieC
I was told the same as you at my cancer centre about the recommended use (or lack thereof) of creams and lotions during radiation treatment. 
But I went with the personal tips shared by the wonderful people on this site who had actual experience, and don't regret it. 
I used glaxal cream quite liberally. Started using it 2 weeks before radiation to help build up the moisture in the skin. Still using it 2x day, 2 years later. Truth be told, any scent-free lotion that has "aqua" listed as its first ingredient is likely fine. 

It was recommended to me to NOT put any lotion on 2-4 hrs before each radiation treatment. I was told the lotion in/on your skin may amplify the burning.
So here's what I did: my radiation appointments were always 1st thing in the morning, so I always "lubed up" the night before, then had a quick shower in the morning before my appointment to make sure my skin was clean and dry. Then, I took my lotion with me to the hospital and "lubed up" again in the change room after I had my treatment.

I'm sure you'll find many more tips in the discussion thread Let's Talk Radiation

As Essjay says, the fatigue hits you hardest about 2 weeks after the treatments are done and lasts for about 2-3 weeks. 
In my case, my fatigue was still an issue 6 weeks on.  As it turns out, I developed hypothyroidism shortly after my treatments were done and am now on medication for that. 

Good luck with your radiation sessions! Get a calendar and put a big X through each day that is completed! 

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by mc2 on Jan 18, 2020 7:49 pm

BonnieC‍  i was given he same advice by the radio-oncologist r.e. cream (or actually no cream).  I listened and my skin did not need it.  Even after when I had a small 1-week rash it was quite mild and went away on its own..  I was told there are also prescription creams they could recommend if I did have a bad rash.  For the scheduling of appointments, I was not given the luxury of choice but at least most were at the same time each day and efficient.  My fatigue was not much worse in the afternoon than in the morning.  For me, the fatigue crept up in week 3 and kept going worse until 1-week post-treatment and then gradually got better.  If I did not have a job that requires a lot of concentration, I could have worked part time throug radiation except maybe the week after the last treatment. I think the fatigue was also due to the relief of having been treated also.  But some people get big rashes and no fatigue so  my only advice is to try to build flexibility in your plan so you can adjust depending on how it goes.  Wishing you well.

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Charper on Jan 19, 2020 11:34 am

Hi everyone, BonnieC‍ , Essjaymc2ashconRunner Girl‍ sounds like you BonnieC‍ got some good information, I am taking it all in and storing it for when my time comes.  I have not heard from the radiation oncologist as of yet, they said beginning of February and I guess that's when I will hear "for sure" if they have or will be ordering the oncotype dx test. Always waiting...anyways I have healed good from surgery, had a laugh with my suregon when she asked to have a look...i said you wanna see my flat bottom boob 😊 haha. I hope you are all well, sending love and hugs.