Learning so much

Trinity789 · January 2011

In order for me to get through the treatments and even adjust to the idea of having cancer I have been on a quest for knowledge. Why and how does cancer happen and what triggers it. Its been hard to accept without being able to understand "WHY". Dr Loves book is good. Guess I had a "bad neighborhood" for the cells to go wild.

These boards have helped me accept and learn that "IT" happens. Everyone is great on this thread. Thank you! I have decided my attitude needs to embrace the chemo treatment. I have been so worried about the tests or understanding whats next that its not healthy. I admit I am a control freak and cancer has made feel out of control. I need to control my treatment or my bodies reaction to it and chemo scares me becuase its an unknown.

I met a women last week who told me that I should be happy that we have chemo treatment as some cancers do not. I had been explaining how scared I was of my fast approaching date. I did not know that some cancers did not have a treatment of some sort and she made it clear that she was in that scenario. I thought about her and how much of a baby I may have sounded. I am lucky to have something that can help me prevent a reoccurence. I kept thinking of it as all of these big bad chemicals and what they would do to my healthy ones. Do I take the chance? The answer is yes...

Does anyone visualize the chemo as pac men gobbling up the beast? The nurses keep saying chemo isn't like it was before and that I will be fine. Is this true? Or are they trying to keep me calm. Starting TCH on 2/11/11.

Kymn · January 2011

Hi Trinity, I too am on a quest for knowledge. I am 41 and just found out I have breast cancer. I had a lumpectomy yesterday and am still sitting here trying to adjust to the fact that I have cancer let alone this huge scare now on my right breast and so much pain under my arm where they took the lymph nodes. this is all happening too fast yet its like I am in slow motion dont know if that makes any sense i am on meds right now for pain . I dont find out for a week now if it has spread to my lymph nodes and dont get to see my oncoligist until the 17th to find out what my next steps are. i am terrified of chemo also and I know I have to do whatever is going to be best to make sure this never comes back but it really scares me too.

Trinity789 · January 2011

Hi Kymm,

Sounds like we are on the path with a recent BC. I am 41 as well. I had my lumpectomy on 1/5/11 and feeling great. Went back to work on 1/19/11. The node surgery hurt for 2 weeks. But each day it was better. They gave me a small fleece heart shapped pillow to place under my arm pit. It was the best thing ever.

Keep us posted and best of luck to you. You will love these boards its great to have people to turn to who have been though it.

skmarm · January 2011

Dear Trinity,

I was where you are about a year ago - my lumpectomy was on Jan 11, 2010. I, too, turned to research for answers and as an educator, found myself reading absolutely everything in sight - still do to some extent.

My best friend's mom was diagnosed with serious kidney cancer the same week that I was diagnosed with breast cancer and I found out then that not all cancers have chemos or treatments that are as effective as what we have for breast cancer. So, yes, we are fortunate to have chemo and I will be the first to say that. On the other hand, and this became really important to me over the past year, it is also perfectly acceptable to be mad as hell that you have cancer, that you have to take harsh chemo (which is barbaric by any measure) and that you will have side effects that are sometimes unpleasant.

I say this not to scare you, but because I for one, just got tired of people telling me to "be grateful". It was almost as if I was expected to "put up, shut up and just get on with things" without dealing with my anger. Well, let me tell you...you have to deal with the anger or it will tear you up. Deal with it however suits you best....read like crazy (which is what I did), scream a little, cry when needed, find a friend who will let you vent, find the dark humor in "the cancer world" (and it is there, if you just take a look at it and be willing to laugh at it and yourself). Just don't, under any circumstances, let someone make you feel guilty for being afraid, or feeling bad, or just being angry for having this awful disease.

Trinity, I was more afraid of chemotherapy than of surgery or dying. I watched my dad go through chemo 28 years ago and I was terrified. The truth is that your nurse is right - it is an entirely different situation today. Many of the chemos are the same as the past 25 years, but the medications that are given to cope with potential side effects are miraculous, just miraculous. I have to say, hands down, that I suffered more with the mental anxiety and just the difficulty I had in surrendering to how all consuming cancer treatment is, than I did with the actual side effects of the chemo. I do tend to "overthink" things, but in retrospect, the actual physical side effects - though you certainly knew you were taking medication - were not NEARLY what I expected.

And of course comes the good with the bad - we HER2+ gals have herceptin and more to come (tykerb and neraptinib) - some of the greatest meds invented for breast cancer. There is no "good" cancer, but there are those that are far more treatable than others and that is what you and I have and for that, I am immensely grateful.

I certainly don't want to frighten you, dear. I just had a hard time through surgery, chemo and radiation, with all the medical professionals telling me to "be grateful". Sometimes, not all the time, but sometimes, I felt like I was being told to "shut up and be a good girl". I've never been that kind of person, but especially now. If I can stare down Adriamycin, I can stare down the best of them!

I wish you well. Fill ALL the prescriptions they give you for meds for side effects, so that you can keep yourself completely comfortable. The chemo is doable...it is all doable...and get yourself a buddy or a group or someone who has been through this to be your personal sounding board...for those days when you aren't feeling so "grateful".

Blessings,

Kelly

Kymn · January 2011

Good morning Trinity and Kelly, thank you for your response Trinity I kind of find these boards overwhelming as there are so many of us going through it its hard to make a personal connection.I feel better today not great but definetly better than yesterday I like that pillow idea i will get one of those as I am going back to work on monday only booked the week off figured I would go crazy just sitting around the house with me and my cancer haveing a pity party everyday.

Kelly thanks for writing all of that to Trinity, it really helped me also as I am just in the beginning stages of fighting this I sure hope I have the same kind you two have and its easier to fight. I just dont know anything yet and I feel so helpless and uneducated. There is so much to read on these posts and it doesnt all make sense to me. I will add this to my fav posts and let you know what kind I have when I find out.

thanks again from Canada

Kymn

Trinity789 · January 2011

Hi Kelly,

I appreciate all the feedback and feel better. I enjoy reading as well. I have good and bad days. I have to chuckle about peeing in the "bucket" for 24 hours and keeping it cold. This I can do Cool but its just another inconvenience.... I guess we have to get used to it all.

I am not familar with the other drugs you mentioned. Maybe they did not want to share it with me yet. I remember the oncologist saying you will feel normal in about 5 years. He said its mostly emotional and if theres no reoccurence by that time you will relax. I was sort of hoping that by this time next year I could move on a bit. But since I did the lumpectomy and possibley have a false negative on the brca1 & 2 with my moms history of bc at 41 they are scaring me a bit about a new bc. I just need to get through this treament first. Are you done with chemo?

skmarm · January 2011

Kymn, you h ave probably heard it before, but you are in the darkest place you will be in during your cancer journey right now - the place where you don't have all the answers and don't know which path you will take yet. I promise you, you will feel much better after you have met with your oncologist, get your pathology report, know what type of breast cancer you have, and then have a plan for dealing with it.

Someone told me this before I had my lumpectomy and I didn't believe them. I was still hoping at that time for ER positive, low grade, small tumor (less than 1 cm) and no nodes involved. I did not want chemo, I wanted tamoxifen and I wanted to keep my nodes. Well, while I don't have the worse cancer in the world, I certainly got more than I bargained for - estrogen negative, Her2+, 1.7 cm tumor, 2 positive nodes, axillary dissection...and it made the difference between having no chemo and having very aggressive, dose dense chemo - and still, the devil you know is better than the devil you don't know - so once I found out, at least I had a plan, I could settle into the plan and push forward. You will do that too.

It is odd, but once I got into the chemo, my world became about dealing with chemo and the whole issue of "OMG, I have cancer, I can't believe I have cancer, am I going to die tomorrow" just faded to the background. I didn't have time to think about having cancer, I was dealing with chemo. I didn't have time to worry about dying, I was dealing with chemo. It's odd, but it is a better place than just worrying.

Trinity, I had dose dense (a 3 week dosage administered every two weeks) Adriamycin and Cytoxan for four rounds and then Taxol and Herceptin every week for 12 weeks. After I finished the Taxol and Herceptin, I continued Herceptin every 3 weeks for 1 year. I have three more rounds left to take of the Herceptin, and then I hope to be enrolled in a clinical trial for Neraptinib for a year (Neraptin is a biological chemo that targets the Her2 receptors. It is a lot like Herceptin; however, Herceptin targets the receptors from outside of the Her2 cell and Neraptinib targets the Her2 from within the Her2 cell. It is believed that the Neraptinib, like Lapatinib, is a smaller molecule than Herceptin, and as such, may cross the blood brain barrier. That is important, because Her2+ breast cancer is a little more likely to metasticize to the brain if it spreads than Her2 neg cancer. The Neraptinib (or Lapatinib) helps with that.) From the looks of it, my cancer has not spread, but I want to take every measure.

My chemo combo is considered more aggressive than yours (although some TCH ladies might disagree), but then again, my tumor was larger than yours and you don't appear to have any node involvement. That is probably the reason why. So if I understand correctly, your course of chemo may be shorter; however, your Herceptin will be administered for a year, like mine. The Herceptin is the easier part of it by far and many folks have no side effects at all from the Herceptin.

I don't know about the BRCA false negative, Trinity, as I was not tested for it. Can you have it redone to give you some peace of mind? I would think that the results of a BRCA test are very important, because if it is positive, you may want to consider more aggressive surgery. That is a very important decision and not one to be left to a "maybe" result on the BRCA test. I don't want to worry you, I want to see you have some peace, so please consider having that test redone or taking the result to another oncologist for a consult.

Lastly (and I know this is a long post, sorry, I have lots of words in me), my oncologist told me that the good news with Her2+, ER/PR negative cancer (if there is any good news to be had with cancer) is that although its risk for recurrence is higher in the first 3 years, after the third year, the risk decreases CONSIDERABLY. It remains decreased (though not completedly gone) for the remainder of your life. This contrasts with ER/PR + breast cancer in that, while the risk for recurrence initially and throughout is lower, it remains at the same level throughout the patient's life - it is just as likely to come back in 10 years as it is in 3 years or 20 years. Of course, I don't ever want it to come back for ANY of my breast cancer sisters, but somehow knowing that the risk will remain low throughout my life past the 3rd year mark, sort of makes up for the higher risk of recurrence through these first three years.

And even though I am a little paranoid (aren't we all?) about recurrence even now (at the one year mark), I promise, I am less so than I was a year ago. You will relax, slowly but surely, every step of the way. You will not maintain this level of high anxiety for five years...you just won't.

You have to live every day, in the moment. It is a hard way to be forced to do this, but it is about the only "gift" that I am sure of from this journey.

Take care and please let me know how you are doing. If I can answer any questions for you, I am happy to do so. I got a lot of help from these boards in the past year and it was invaluable.

Blessings,

Kelly

Kymn · January 2011

thank you Kelly, I will hold on to your words that this will get easier to deal with I didnt understand all you said yet but I'm sure once I see my oncologist and he explains some of these terms to me it will all make more sense. I am feeling better today from my lumpectomy so I will take that as encouragment it doesnt feel like my arm has been ripped off and stiched back on anymore now its just like a really deep bruise. I tell my kids today am a bit worried about that. They have been staying with their dad this week so I could go through this surgery without having to worry about freaking them out.Thank goodness their dad and I are best friends it sure helps to have people around you doing what they can to make things easier on you. I will let you all know how that went and when I find out more.

thank again, Kymn

Trinity789 · January 2011

Kelly,

Thanks for all the info. It really helps. I will ask about the additional treatment your talking about. Hope it all goes well for you, please keep us posted.

With the BRCA1 and 2 I can be retested in a couple years or if something changes healthwise that directs them in another path. Basically their message to me was you are really positive but we have not found your genetic mutation.

I will make it through the chemo then decide about the MX before the radiation starts.

Shelly1953 · January 2011

Hi Ladies,

I just wanted to give a little info since I've finished the TCH and Herceptin treatment. (TCH in April '10 and Herceptin in August '10). Read the TCH thread for help with symptoms but here's some things that I did. You may not have all of these but it's good to know

1. Fluids, fluids, fluids. Washes the chemo out of your system faster. And helps with the "foggy" feeling

2. If you are prone to nausea, TELL the Doc before you start and ask for a stronger anti-nausea med.

3. TCH can cause numbness in hands and feet. I took frozen water bottles and held in my hands off and on during treatment so the chemo didn't go to my hands. Really helped. Had numbness in toes but none in my fingers (Toes are fine now)

4. Eat whatever sounds good to you, but in little amounts, often. Don't overload your stomach.

These are some of the things that helped me through chemo.

You can do this.....it's not a walk in the park, but take it from someone whose a big baby, you can do it. Just tell yourself with every symptom you get that it's working and killing the cancer cells.

If you are tired, rest. Listen to your body. This is a traumatic time in your life and don't let anyone sway how you handle it (except this board, ha!) But the best advice I can give is how I handled it....talk about it, read about it (but give it a break when you get upset, and you will) and find what humor you can. (I would throw up/have diarrhea and when I was done I'd weigh myself to see if I'd lost weight, gotta get something out of it") Anyway, by me talking about it to whoever wanted info, I found I took the "mystery" out of it for me and it became just another "disease" if that makes any sense.

Learning so much

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