Posted by LoveSwimming on Feb 11, 2019 3:35 pm
Posted by Brighty on Feb 11, 2019 3:57 pm
Posted by ashcon on Feb 11, 2019 4:13 pm
Nice to meet you as well, and glad you have found this site. There is so much to say (and ask, and cry, and scream about) at the start of this journey, and yet it is easy to feel speechless at the same time.
I did the deer in headlights look for about 2 weeks.
Ductal Carcinoma is the most common type of breast cancer, so you are not alone, and will find many like-minded and like-hearted souls here.
You may find these discussion forums helpful, or at least a good place to start: "Cancer Types - Breast", "Treatments and Side Effects" and "The Emotional Roller Coaster". Feel free to respond to pre-existing posts or start a new one.
I got my diagnosis of invasive ductal carcinoma (IDC) in July 2017 (triple negative with 2.4cm tumour and 4 positive lymph nodes) and after a full gamut of treatment - 2 surgeries (a lumpectomy first, then bilateral mastectomy 6 months later), chemo + radiation - I am on the other side. You will get there as well, and you will have to patient and gentle with yourself through this journey.
What surgery are you having?
Tagging Kims1961 who is a BC survivor and is also an avid swimmer!
Posted by LoveSwimming on Feb 11, 2019 4:41 pm
Thank you for your kind welcome.
I am having a lumpectomy next month. I am ER+ and HER2 -ve. Don't know yet re lymph node involvement. ugh. I am just coming out of the shock and why me phase. My loved ones are terrific but they have not had cancer so it is really helpful to have a place to go to talk to those who know. I am so sorry Ashcon for the journey you had. But so grateful for your and Brighty's kind words. :)
Posted by Kims1961 on Feb 11, 2019 4:54 pm
So glad you posted. You are not alone and so many of us are or were in the same shoes as you. I was diagnosed with IDC - on my 56th birthday ( for extra sympathy)...I was totally shocked and like ashcon felt like a deer in the headlights. I moved through - positivity and upbeat to I"m going to die and how do I tell people? I reached out to this community and have found it so very very helpful. Helps to chat with others about any fears, questions, vent or share...this has really helped me.
I found the nice part of this community is that people don't "tell" you what to do but rather honour that we each have our own "journey". We can share what helped or why we made the decisions we did, but mostly its about connecting.
In the early days of my diagnosis - I felt like it was hurry up and wait. The "limbo" of not knowing what was going to happen - what type of surgery - what kind of treatment etc etc. I wanted all the answers right away. What I did find was it does get easier - even knowing you may have to do other treatments. This early stage was the most difficult. I had surgery - bilateral mastectomy with no reconstruction. My surgeon was recommending just a lumpectomy but I was 56 and felt I was ok to let my breasts "go". I had chemo and radiation as well.
Coincidentally - it was through swimming that I gathered some courage. I worried after my surgery that going "flat" would be uncomfortable in the swimming change room. I was worried I would "scare" kids/adults ....weird eh? Anyway, I met this wonderful woman - 75 yrs. young - with just one breast. She was very comfortable in her own skin and being breastless on one side. It was so empowering. Swimming was a great stress reliever throughout my treatment. Once my surgery scars had healed, I went swimming. I swam during periods of my chemotherapy treatment and even went swimming in the early days of radiation treatment. It's a great distractor and so soothing for mental health.
Sorry for the long message. Please try to do some things that are good distractors for you during this "wait" time. We are here for you. Let us know how you're doing.
You may also want to check out this free download book - Silver Linings in Cancer. at www.thesilverpen.com
Posted by cancertakesflight on Feb 11, 2019 8:27 pm
You don't say in your post whether you have IDC or DCIS (Ductal Carcinoma in Situ).
I was first diagnosed with DCIS in 2011 after experiencing blood coming from my nipple in 2010. I didn't even know this was a sign of breast cancer. I knew it wasn't normal, but I didn't know how abnormal it was. Ultimately, after a lot of tests, several tumours were spotted within the DCIS. A lumpectomy wasn't an option. The DCIS made up about 3/4s of my breast, so I had a mastectomy. It never occurred to me to have both breasts removed.
During surgery, they found cancer in two of my sentinel nodes so 20 more lymph nodes were removed. None of the 20 test positive for cancer, but having cancer in two sentinel modes meant that chemo was recommended in addition to radiation.
As for waiting, I have never met a cancer patient who didn't hate all the waiting. As Kims1961 said, I felt much better once I knew what I was dealing with. I felt even better when I had a treatment plan and knew exactly what steps I would take to get to the end of my cancer journey. Kim is absolutely right that distracting yourself is the key. Physical activity is great. Don't hate me, but I don't like to swim. For some reason, I don't even like water. I have no idea why, but I'm sure I'm missing out on some activity that would really be good for me.
While cancer is such a physical disease, it is also a very emotional and mental one too. As ashcon says, you have to acknowledge and deal with your emotions as they come. You have to find the balance between dealing with dark moments and trying to remain positive.
Ultimately, only you can decide what is best for you. Just know that you have a lot of people who have been where you are and can help you along the way. Please keep us posted. We are genuinely interested in how you are doing.
Thanks Brighty for the tag.
Posted by Sew On on Feb 12, 2019 2:42 am
I feel I have been very fortunate with the outcome but am having a difficult time with the visual reminder everyday of having been left with one breast. I don’t know if I really want to stay this way. I do have a consultation pending with a plastic surgeon for reconstruction but am not ready to for more surgery or what options (implants or Diep Flap). Now I just want what is most expediant and least amount of surgery and recovery.
Now I feel that I am ready to go to the pool for exercise and as a de-stressor. However I am concerned about how to handle the process of what is usually the open change room. Your comments about your experiences in this situation have perhaps given me the confidence to just get on with it, Thank you.
Posted by Minus2 on Feb 12, 2019 6:38 am
So, I don't have much to add to the excellent feedback you have already received, but know we have all done this and been okay and you will be too. You will find stable ground again so flexibility is key - so much easier to ride the wave than fight it. Thought that was an appropriate analogy given your love of water! :)
Take care and let us know how your surgery and treatment go.
Posted by Cynthia Mac on Feb 12, 2019 8:38 am
Kims1961 , that’s a great story about meeting the older lady who’d had breast cancer and that helping you over your trepidation’s about “being flat.” It’s also good to hear from all of you who share your stories about being able to “let the girls go.’ You ladies know far more than I about what a personal decision that is, and as a woman who statistically has a very slightly higher risk of contracting BC, these things cross my mind from time to time, so these conversations can help with those thoughts, when they show up.
Great thoughts, too, Minus2 , about taking care of your emotional health!
If I can slide into the topic of swimming, neither Kim, nor Brighty nor ashcon have any evidence that I love to swim, but I do, and Kim’s comment about the lakes being a little cold right now reminded me of the spring when I was 13. I grew up about 150 feet away from Lake Simcoe, one of Ontario’s larger inland lakes. It’s the visible blue blob on the weather map north of Toronto and east of Georgian Bay. That year, I was anxious to go swimming, and I went in on the Victoria Day weekend. Now, I have to share with you that the ice usually “goes out” or “comes in” sometime in April. Yeah. Never did that again.
Posted by Kims1961 on Feb 12, 2019 9:43 am
The first time i put on my bathing suit - after going flat - was a big of a shock. It's not the "flat" look so much - but more of a concave vision that bothered me. That and my port was sticking out . Yet...I realized in the water - although i didn't have the same breast "buoyancy" - the joy of swimming came back and i forgot if i had breasts or not. There is something about swimming - how it regulates your breathing - like yoga - that is soothing. I also realized that other people don't care. In fact, it can be empowering to return to "regular life" again .
Thank you for this great thread...as "Snowpocalypse" is about to descend on Ontario...the thought of swimming again provides comfort!
Posted by Dielle on Feb 12, 2019 12:09 pm
I'm so glad you are feeling hopeful. That can get you through the tough times. As well as being able to talk to the wonderfully, supportive people on this site. I have also found that people who have not been through it, even though they are trying to be supportive their efforts at trying to cheer us up may not be very helpful. And we often find ourselves in a position of not wanting to burden or scare them. So feel free to let it all out here.
Posted by LoveSwimming on Feb 12, 2019 2:39 pm
One day I am taking my health for granted and the next I am wondering if I am going to die/ or be so sick that I will want to/ or lose my independence because I have to stop working (I am a sole income household). Or if I can just get through this with my sanity intact.
I am scared that I will lose the chance to swim. It was nice to hear that some were able to swim for periods during treatment. It relaxes me more than anything. Better than sex! I do laps at the local pool and I feel like it is my own personal Cuba vacation when I am in the water. Sometimes, I can hear the disco music from the aquafit class in the shallow pool and that just adds to the pleasure.
Speaking of which, did anyone else notice that the MRI machine sounds like a nightclub playing electronica music? Ooompa, ooompa, oompa, clang-clang-clang. I had to stop myself from laughing; didn't want a blurry image.
I have great people in my life but it is starting to irk me how little they seem to understand what this is like. I feel like I am in a small boat drifting away from my former life. Good to have people I can talk to who really know.
I send my love and support to all of you.
Posted by Mom2kurtis on Feb 13, 2019 6:08 am
Posted by Shari on Feb 14, 2019 11:02 am
Posted by Minus2 on Feb 15, 2019 5:44 am
I remember reading your posts about whether or not to take Tamoxifen. I know most of us have to investigate the benefits and risks of meds we are prescribed in order to wrap our heads around it. If you don't mind me asking, what was the thing that led you to decide to take Tamoxifen? I am always interested to hear other's thoughts.
When I first started on it I was very concerned about side effects. They haven't happened, and even following a hysterectomy and bilateral oophorectomy, I have elected to stay on the Tamoxifen rather than switch to an AI.
Posted by Diana BC on Feb 16, 2019 9:20 am
I’m really newly diagnosed with Breast cancer. A week ago yesterday I was told I have breast cancer. I’m waiting for the lab results so at this point I don’t know what kind of cancer I have or exactly what path I will be on. I really appreciated this conversation..
I’ve been told likely lump removal, radiation and then hormone therapy will be my path. I’m most concerned about radiation. That scares me the most at this point. I’m fair and burn easily.
One thing that is arising for me at this point, is food. I don’t know what I should/shouldn’t be eating. I worry about feeding the cancer. Is it just me that worries about that?
Posted by Kims1961 on Feb 16, 2019 8:17 pm
Above are links to excellent publications from the Cancer Society. If you go to www.cancer.ca - under publications you will see many others. One covers radiation and the other eating during treatment. The place you are right now may be one of the most stressful as you don't yet know what exact course of treatment you will have. I found once i knew my treatment plan and type of cancer, I also then had medical professionals to ask my questions. For instance - radiation. I was worried about burning as well but once i spoke to the medical team, I realized that they are there to help us through treatment. There are creams you can apply before treatment and during. They can also prescribe medicated creams to help with the burning. It's different than a sunburn as it's located a specific location and seems to develop from inside - out. I found the discomfort manageable in knowing that it was doing it's job in "curing" my cancer.
In regards to food - lots of opinions out there - but it's important to discuss this with your medical team. You want to be as healthy as you can be - so eating well is important. I tried to reduce my processed and junk foods - more about trying to get as healthy as I can to help me during treatment. I also tried to drink more healthy fluids. Some cancer centers will have dieticians that you can meet with that can help with this.
Let us know how you're doing. Glad you posted! Kim
Posted by Diana BC on Feb 16, 2019 9:12 pm
Posted by Kims1961 on Feb 16, 2019 11:27 pm
Posted by Minus2 on Feb 17, 2019 7:34 am
I am so glad you have reached out to ask your questions on this site. You are in a very frightening stage of the cancer journey - gathering of information - but once your medical team knows the characteristics of your cancer and formulates a plan, you will begin to settle and feel more "in charge." I was diagnosed in May 2016 with Ductal Carcinoma In Situ (DCIS) in both breasts with a 2.0 cm Invasive Ductal Carcinoma (IDC) tumour in the right. I was 54 and pre-menopausal. The combined diagnoses led to bilateral mastectomies with immediate implant reconstruction. My pathology indicates Stage 1A, ER+, PR+, Her2-, clear margins, and no lymph node involvement. ( I think I have that report memorized 😉) Chemotherapy and radiation were not part of my treatment plan, but I do take 20 mg of Tamoxifen daily and I tolerate the drug very well, like most women. So, while everything about the cancer journey is scary, we can and do manage it, and you will too, better than you expect. I have an aunt who is a 30 year survivor and I think about her every day.
You had asked a question about food and what to eat or not to eat. We are an estrogen saturated society, so reading labels on everything has become my new past time. My husband is very frustrated with the length of time it takes me to complete the grocery shopping because I read the labels. Oh well!
Because my cancer is ER+ and PR+, my Medical Oncologist advised me against alcohol, soy, and pomegranates. Alcohol raises the estrogen levels in your body, and interestingly, if I do have a glass of wine, generally speaking, I have a hot flash. Soy is a phytoestrogen and acts like an estrogen in your body. Research is not conclusive yet, but my Medical Oncologist is brilliant and if she says to avoid it where possible, I will do that. Pomegranates are high in progesterone, so none of that for me. I have also read studies indicating a link between a high dairy intake and breast cancer recurrence - dairy fat is not good for us because of the hormone content. Milk and cheese are the product of a pregnant mammal, so go figure. We need the calcium, just not the fat.
There was also an episode of The Nature of Things called "Lights Out" that explored the impact of artificial light on our health, specifically the link between its disruption to our circadian rhythm which impacts our melatonin production. It took 25 years, but the scientists were finally able to confirm a direct link between melatonin and breast cancer cell suppression. It aired in December 2012 originally and is no longer on the CBC site unfortunately. But the important thing is that now when I can't sleep, I lay in the dark instead of getting up to watch TV or read. It's not the sleep that was important but rather the avoidance of light.
Sorry for the long post Diana but hopefully there are a few nuggets in here that will be useful to you. Keep us posted on how you are doing. As Kims1961 said, this community is here for you anytime. Take care!
Posted by JenDavid on Feb 18, 2019 6:59 am
Posted by JenDavid on Feb 18, 2019 7:07 am
Posted by Diana BC on Feb 19, 2019 7:50 pm
Just found out I’m triple negative...so the standard approach isn’t going to happen. Feel scared. I know there are many on here that have walked this path before me. So now I’m back to waiting to find out exactly what my path will be.
Hard to believe two weeks ago I had no idea what triple negative means. Now here am I...facing that.
I know you all get it. So thanks for letting me just say ....yuck. Here I go.
Posted by Kims1961 on Feb 20, 2019 12:11 am
I'm tagging ashcon a wonderful member on this site who is also triple negative.
I am the reverse - Estrogen positive which is good but also HER2+ - which is not good. So you're right...yuck...is fitting for us. What i've found is that knowledge is power - as i started to get more info., even info. that was not good, it was still better to know than the "limbo" of not knowing. Being scared is being honest. We are here with you.
Thank you for sharing your news with us. Kim