Hi, I am new here
It has been a whirlwind of a ride that has left me spinning. Everyone says they can't believe how well I am taking everything, and for the most part I have, until this past Saturday, when I had a crying fit. Thank God I have my faith.
I have so many questions that I don't know where to start. I have to go to the doctor on Wednesday and make decisions on treatment. I have been reading as much as I can online until I am overloaded with information and still don't know what to do. I want to make informed decisions on treatment and don't feel I am ready to do so yet.
If the doctor says he "got it all" why is he telling me I need chemo and then radiation?
Should I consult my OB/GYN and family doctor for their opinions on treatment, or just do what the surgeon is suggesting?
If I take chemo, how long before my hair falls out? A trival thing I guess, but my husband has always loved my long hair.
How has your husband/boyfriend handled your cancer and treatment?
Comments
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Questions/Answers
I know it has been a whirlwind since your diagnosis ... but things will start to make sense ... I promise.
I had a lumpectomy on 1/21/09 ... and the lymph nodes were clear. At the time the surgeon said all I would need would be radiation however, after meeting with the oncologist it was determined that I also needed chemo. I was terrified. The thought of being sick as a dog for months was more than my mind could handle. Anyway ... it seems that there are lab results that come back AFTER surgery and those results are what determine much of the treatment plan. My treatment consists of 12 weekly infusions of taxol and herceptin. I had a port put in and that has made the infusions a breeze. Really. I can't imagine having them poking and prodding for veins every week. I don't think I could do it without the port! I've already had 9 treatments and I can honestly say I have not "felt" sick at all during this time. The only side-effects I've had are manageable. After my 12th treatment I will start 6 weeks of daily radiation ... and the herceptin infusion will continue every 3 weeks for a year.
Yes ... it's a lot more than the lumpectomy and the radiation I had thought I'd need ... but if it helps in any way ... I can do it.
As far as your hair falling out ... and other side effects ... it all depends on the drugs you are given. Different drugs have different side effects and even then ... everyone has different reactions to the different drugs. It is amazing what can me done now to keep the side effects to a minimum. Since my taxol/herceptin combination is NOT one of the "stronger" chemo treatments I convinced myself I could do it. And ... so far so good. I was told taxol would cause my hair to thin ... so I was prepared for that. The only thing is ... I thought by "thinning" it meant a few hairs here ... a few hairs there... but on day 15 from my first treatment I ran my fingers through my hair and had a hand full of hair. At that point I called a friend and told her I'd be over right away for her to shave the whole thing. I didn't want to mess with flying hair ... and bald spots here and there. So ... it was shaved and I've been fine with hats and scarves.
I would suggest that you make a list of your questions for the oncologist appointment Wednesday ... and try to take someone with you into the room as you talk. It helps to have that extra set of ears. And ... take notes. Don't leave until ALL of your questions have been answered to your satisfaction.
Also ... you will be amazed at the wonderful women (and a few men) on this discussion board. You can ask anything ... you can say anything ... you can vent etc. etc. etc. We are ALL here for each other. This is a wonderful "learning/sharing" place ... and we are all here to support each other.
Welcome to a club no one wants to be a part of.
hugs.
Teena0 -
Hi, Welcome. I can not
Hi, Welcome. I can not answer your question,s, to new to this myself. The other lady's on this site are just great. I do understand your overload of questions, and your fear. I know how everyone thinks and say's how great your doing when inside you are scare to death. I can tell you that there is some comfort in just having others who are going though what you are going though. I am sure all your questions will be answered. Hang in there.
Kathy0 -
Hi Ksstizme
Welcome to this site. We have all been on that whirlwind ride and know how you're feeling!I have the same faith in God,and it was really one of the times when I was glad to know that He was in control-because I definately wasn't!!
I was diagnosed in 2007 with invasive ductal carcinoma in my left breast,had chemo,radiation,and am now taking an estrogen blocker for a while. I am not a doctor,but I know by my experience that even though my surgeon had "gotten it all",chemo goes throughout your whole body and kills any of the cancer cells(and fast-multiplying cells) that might still be roaming around(just to make sure). And radiation kills any of those cells that are in the same area as your tumor was.
Like someone else mentioned here,whether or not your hair falls out all determines on what drugs your oncologist decides to use-and everyone's experience is different.And yes,it's a good idea to write all of your questions down to ask your oncologist-it's easy to forget things when you're overwhelmed already!
I knew that my husband was a stong person before I got sick,but he really proved himself during everything! Yes,I (and he) had our ups and downs to be sure,but we made it through and we're still together! And if you really wonder,just ask Aortus and Moopy on this discussion group site!!I can honestly say that my husband's and my relationship is stronger because of it!
Knowledge is power,but try not to do too much research online-sometimes you can really scare yourself and that isn't going to help you out right now.Your oncologist would be a good one to ask questions about treatments,the ACS website,Susan G Komen,these women and men on here can and probably will share their experiences with you and be able to give you advice.
I'll end by saying that you are definately not alone,and all of us here are making it through and so will you!!0 -
Not just making itoutdoorgirl said:Hi Ksstizme
Welcome to this site. We have all been on that whirlwind ride and know how you're feeling!I have the same faith in God,and it was really one of the times when I was glad to know that He was in control-because I definately wasn't!!
I was diagnosed in 2007 with invasive ductal carcinoma in my left breast,had chemo,radiation,and am now taking an estrogen blocker for a while. I am not a doctor,but I know by my experience that even though my surgeon had "gotten it all",chemo goes throughout your whole body and kills any of the cancer cells(and fast-multiplying cells) that might still be roaming around(just to make sure). And radiation kills any of those cells that are in the same area as your tumor was.
Like someone else mentioned here,whether or not your hair falls out all determines on what drugs your oncologist decides to use-and everyone's experience is different.And yes,it's a good idea to write all of your questions down to ask your oncologist-it's easy to forget things when you're overwhelmed already!
I knew that my husband was a stong person before I got sick,but he really proved himself during everything! Yes,I (and he) had our ups and downs to be sure,but we made it through and we're still together! And if you really wonder,just ask Aortus and Moopy on this discussion group site!!I can honestly say that my husband's and my relationship is stronger because of it!
Knowledge is power,but try not to do too much research online-sometimes you can really scare yourself and that isn't going to help you out right now.Your oncologist would be a good one to ask questions about treatments,the ACS website,Susan G Komen,these women and men on here can and probably will share their experiences with you and be able to give you advice.
I'll end by saying that you are definately not alone,and all of us here are making it through and so will you!!
I was just thinking as I signed off,I just wanted to let you know-we are not just making it through life. Life will never be the same for any of us,but we are still able to enjoy life and even live productive lives!0 -
the unknown is always scary but...
You will always have this site to come to for questions, Welcome Ksstizme. It is a good idea to write down a list of questions, because as soon as you hit the dr office, everything you said you were going to ask flies out the window of our brain. Let your doc give you all your options, then you will know which questions you will be asking in the next round. We all have our own stories, but every dx is different. But the main question I see is why do you need chemo and radiation if they say they got it all. That is also a choice you make for yourself, but most of us figure that anything that reduces the chances of recurrence are worth the side effects of the "cure". Hair loss being the big one, most breast cancer chemo will make you lose your hair, but most of us here have done it, and I don't think any one of us regrets it. Trauma yes, regret, no. Good luck with everything to come, and visit us often, you will find that the wonderful people on this site will be on your side from the "getgo". Take care and keep us informed.
Cat0 -
New Here
Well I am not exactly new here, but I am not old here either. I finished chemo in April and started Tamoxifen and Radiation in May. Your reaction to your treatment will depend on how you and your body. The best thing you can do for yourself is to rest when you feel the need, eat when you can and listen to your body.
I have a port also it is a blessing, and if they offer you one you should take it. Deffinatly take someone with you, it will help you rememeber what they tell you. Never fear to ask questions of your Doctor or your Nurses that is what they are there for.
Most importantly you are not alone you now have a whole bunch of brothers and sisters that will listen to you, and pray for you. I know that I will.
Tjhay0 -
Thanks to alloutdoorgirl said:Not just making it
I was just thinking as I signed off,I just wanted to let you know-we are not just making it through life. Life will never be the same for any of us,but we are still able to enjoy life and even live productive lives!
Your information and kind words warm my heart. I will diffently be watching this board for more info and encouraging words.0 -
Just like you...
Ksstizme:
Just like you, I had a cyst on the left breast in 1986 that was removed and benign. I have a yearly mammogram after the age of 40. Last year, the radiologist was suspicious about the same area where I had my cyst removed. She told me to come back in 3 weeks and then 6 months. Last Dec 2008, she did another mammogram and ultrasound. In the Ultrasound they found 2 lymph nodes that looks abnormal. She suggested that I get an needle biopsy on the lympn nodes but I told her I want to get an approval from my Primary Care Physcian (PCP). Had an appt with PCP and told her I wanted to see Dr Dugoni who is a surgeon in our area. Saw Dr Dugoni (surgeon) in Jan 13, 2008. Went ahead and did a needle biopsy on the lymph nodes. The following week, I saw Dr Dugoni and he told me that it was cancer. After this, I had so many tests done, like Chest Xray, MRI, MRI with Needle Biopsy and all my Drs - Surgeon, Oncologist and Oncologist Radiologist (they all work as a Team) decided in the conference that they had with me that it would be better that I have a bilateral masectomy on my left breast just becuase there were traces in the 3 o'clock and 1 o'clock positions.
I had my masectomy in February 28, 2009. Chemo cannot start until 6 weeks of healing. I had my first chemo in April 1, 2009. Like you, I was scared of losing my hair. I was not afraid of the chemo as a lot of women (old and young) that i know of, had done it before. It was the hair thing that really bothered me. After the 2nd chemo or 16 days after the 1st chemo, I noticed that my hair was falling - like 20 - 30 strands, not much but I went ahead and took the razor and had my husband shave my hair. At first, I cried but after he shaved it off, I was okay. I felt that this would be better, as I was still in control of the situation. So far, my family and I are okay with the way I look (no hair)....you will get used to it. I always tell myself that it will grow back. My oncologist told me that once I have the Taxol treatment after the adriamycin and cytoxan (May 13)....my hair will start to grow.
In terms of the treatment - chemo and radiation, that is something you will need to discuss with your Doctors and a decision you will have to make at the end.
Good luck and let us know if you have questions.
Joy0 -
Hi Ksstizme..........
I agree with what everyone here has already said. I would like to welcome you to the board, although I'm sorry for your dx.
As far as hair, mine started to seriously fall out shortly after my second chemo, so I went ahead and had my head shaved. But as already stated, loss of hair will depend on what drugs are used. And that will be decided once your path report is back and your oncologist determines which treatment will be best for you.
I can only speak for myself, but my husband really stepped up to the plate for me when I started on this journey and was by my side for everything. We leaned on each other to get through a lot of it and I can honestly say that we are probably closer today than we have been at any other time in our marriage.
Lots of hugs for you, and I am certain that you will hear from many more wonderful and knowledgeable people here.
CR0 -
WelcomeCR1954 said:Hi Ksstizme..........
I agree with what everyone here has already said. I would like to welcome you to the board, although I'm sorry for your dx.
As far as hair, mine started to seriously fall out shortly after my second chemo, so I went ahead and had my head shaved. But as already stated, loss of hair will depend on what drugs are used. And that will be decided once your path report is back and your oncologist determines which treatment will be best for you.
I can only speak for myself, but my husband really stepped up to the plate for me when I started on this journey and was by my side for everything. We leaned on each other to get through a lot of it and I can honestly say that we are probably closer today than we have been at any other time in our marriage.
Lots of hugs for you, and I am certain that you will hear from many more wonderful and knowledgeable people here.
CR
I know that this is not where you want to be right now..but welcome to a great group of friends. We are all here to support one another.
Both your treatment and the way your body handles the treatment will depend on your diagnosis and what your doctors think is the best for you.
My tumour was also in the location of a previous cyst. I had chemo before surgery. Lost my hair in the second week. I never liked wigs or scarves or hats and have come to like my bald head..just beginning to grow in and I will miss it. My reaction to chemo was pretty difficult, so it was cut short. I had surgery last week and will then do 5 weeks of daily radiation and then 10 infusions of Avastin for a clinical study.
As you can see, everyone has a different story...but we are all together battling the cancer and loving everyday..no matter how we feel.
My husband has been fantastic(there have been bad days!) He has survived 2 cancers and I think that has helped. I hope yours gives you the support you need...feel free to talk to us too. Welcome!!!0 -
I agree with the other
I agree with the other ladies here. This is my 2 cents worth in addition:
1. This is a great site to come to for the voice of experience, and to know you are not alone in your experience. You will also find out that, though we do have much in common, each survivor is an individual and each case is unique.
2. Keep a notebook handy and write down every question you have as soon as you think of it (like, why is he recommending chemo, what about the hair, etc?). Take the notebook to every Dr. appointment and write down his answers. Take a trusted person with you to help make sure you ask what you mean to ask and get the answers you need. Two heads are better than one. There is lots of information to absorb and there is a lot of emotion involved!
3. Do not try to do this alone. My faith and my faith community are my major supports, especially my husband and teenage daughters. If folks offer to help, take them up on it. You may not know what you need now, but definitely tell them you will let them know as you go along.
4. It is scary and it feels like you just have to get it over with right now, but you really do have time to make sure you are informed and make sure you are making the best decision for YOU.
That's all you get for 2 cents.
Live as well as you can for as long as you can. seof0 -
Warm Welcome, Ksstizme!
Though, of course, I'm sorry for the reason you're here. I joined about a month ago - to mark my own 5 year anniversary for completion of all invasive treatment (lumpectomy/chemotherapy/radiation). That particular milestone made me feel like a true long-term survivor.
You have found the perfect group of new friends, so very open-hearted and willing to help & share, support & encourage. There is nothing you cannot express to us here; because, we understand in a way that those outside of a breast cancer diagnosis simply cannot.
You have certainly experienced what we often describe as a "ride on a roller coaster" - very fast, with lots of stomach-churning twists & turns. Whirlwind, indeed! And if you've been "handling" it well so far, that's fantastic. However, don't ever deny yourself the need to cry - because tears relieve the body of built-up stress. Also, don't hesitate to reach out to others - as you've done by joining this group - whenever you need to. Please don't try to be strong for the sakes of others. This is YOUR time to focus on you.
As others have already explained - your final pathology test report following surgery will provide your doctors with the information they need to make their best recommendations for additional treatment. Even a very small tumor (as mine was) has the capability of throwing off cancer cells. Doing research online is great; but, your answers won't be found on the internet. Each patient, each diagnosis, each individual treatment plan is as unique as a fingerprint. All of us here travel the journey - yet, the road itself is different for each
Not all chemotherapy drugs cause hair loss. And if it does, and in terms of the bigger picture - truly, it's a small price to pay to possibly save one's life. Not having hair is temporary - it does grow back when chemo ends.
Husband/boyfriend? Well, I think that greatly depends. In my unprofessional, layman's opinion... If the relationship is very strong to begin with, including lots of love and commitment - it grows even stronger. (My husband and I just celebrated our 29th wedding anniversary a few weeks ago.) I sincerely hope this will be so for you.
Please do keep us posted as you learn more about your own progress. You will never be alone along the road. There are many here who are where you are now, many currently undergoing various types of treatment, those just finished, etc. ... Doesn't matter, we're all in this together, all here as companions.
Best wishes to you.
Kind regards, Susan0 -
Welcome to the club no one
Welcome to the club no one wants to join but here we are. Sorry you have to join us because it means another sister is fighting the beast. I, like you, was diagnosed with invasive ductal carcinoma on the right breast June 1, 2007. Had a mastectomy on June 7, 2007. The surgeon told me that I would need chemo from the results of the biopsy because they found stray cancer cells in the blood vessels of the breast. So, I met with the oncologist right after having the mastectomy. I had 8 rounds of chemo and did not need radiation because my lymph nodes were clean. Depending on the type of tumor you had, which they will know 1 week after your surgery, will determine the type of chemo you will be having. It also depends on how aggressive the tumor is, how large, etc.
I know you are overwhelmed and scared like all of us were, but keep a small notebook handy and write down all your questions, so that when you go to the doctor you won't forget what to ask. Also, take someone with you to all your appointments. Sometimes, we are overwhelmed with too much information and we tune out or don't hear everything the doctor is telling us so it's always best to have an extra set of ears.
Lastly, take a deep breath because you will get through this. We are all here to give you support and try to answer your questions. Post often and don't feel you are alone because you have all of us.
As for your life, it will certainly change, and many of us will tell you that it's not the same, post cancer as it was pre-cancer, but with the support of your husband, family and friends you will get through it. Hugs, Lili0 -
Hi Theremmontero38 said:Welcome to the club no one
Welcome to the club no one wants to join but here we are. Sorry you have to join us because it means another sister is fighting the beast. I, like you, was diagnosed with invasive ductal carcinoma on the right breast June 1, 2007. Had a mastectomy on June 7, 2007. The surgeon told me that I would need chemo from the results of the biopsy because they found stray cancer cells in the blood vessels of the breast. So, I met with the oncologist right after having the mastectomy. I had 8 rounds of chemo and did not need radiation because my lymph nodes were clean. Depending on the type of tumor you had, which they will know 1 week after your surgery, will determine the type of chemo you will be having. It also depends on how aggressive the tumor is, how large, etc.
I know you are overwhelmed and scared like all of us were, but keep a small notebook handy and write down all your questions, so that when you go to the doctor you won't forget what to ask. Also, take someone with you to all your appointments. Sometimes, we are overwhelmed with too much information and we tune out or don't hear everything the doctor is telling us so it's always best to have an extra set of ears.
Lastly, take a deep breath because you will get through this. We are all here to give you support and try to answer your questions. Post often and don't feel you are alone because you have all of us.
As for your life, it will certainly change, and many of us will tell you that it's not the same, post cancer as it was pre-cancer, but with the support of your husband, family and friends you will get through it. Hugs, Lili
My oncologist described the chemo and rads as a "Clean up operation" Just to get anything that might have slipped through the net and would cause summat nasty later on. I lost my hair on day 15 after FEC started. It is now growing back thick and fast and people who have just met me tell me they would never have known, and that my new hair suits me better than my long hair......10 years younger. That's OK, But I DIDN'T CHOOSE IT.
I am now less than 9 months out of treatment (Chemo/Rads) and I am in full time physically demanding employment, and I LOVE EVERY MINUTE of it!
I hope this info doesn't bore you to death. Huge Hugs and welcome to you. Jxxxxxxxxxxxxxxxx0 -
Hey kiddo. Sounds like you
Hey kiddo. Sounds like you have some mighty fine doctors who believe in being decisive and moving swiftly. It's always a shock. I was diagnosed with Stage I, but still I had chemo and radiation. Radiation is standard with lumpectomies. And I was told that Chemo is used because it was determined that I needed chemo as an extra precaution to prevent recurrence. I'm finished with treatment, life is still GOOD! I'm not Pollyanna. But, I'm here to tell you little by little, things get better. There will come a day when you don't wake each morning thinking about breast cancer and there will come a day night when it's not your last thought before going to sleep. Yes, life returns to "normal. It's a new normal, but it's good! Hang in there, kiddo. You've come to the right place to be heard and to be supported. Hugs, Marilynn0 -
Your new journey
Our lives take on journeys that none of us can explain or understand. However, after the initial shock---things will get better because you will start looking at all of these new medical procedures as your lifeline to your future. Hang in there and yes, you will have days of throwing crying fits as we all have. My journey with cancer began in 2003 and here I am just plugging along and still taking chemo.
My advice to you is to always have your list of questions you want to know about with you each time you visit your doctor. Be sure to write down the answers. Also, talk to your doctor about a port. I have had mine since 2003.
Be strong my dear and remain as positive each day as you can. Always remember that God walks right with us and we are never alone.
Keep all of us posted and know that you have a team of supporters all over.
NeNe600 -
They got it all
Oh how we wish. That was the first comment I made to my primary care giver.' If they think that they got it all why do I have to do chemo/rads and all of it"?I told him.. they said one cell had escaped and how do they know that? He said " they are just speculating that one has escaped and that the rest is all preventative. That is a big presumption, but I think it scares the B-Jesus out of us so we will do whatever we can to prevent the beast from creeping up on us again.
As far as your man...He goes through the same thing you are..denial..anger..bargaining..depression.. and acceptance, we will go back and forth through all of this, but he will be there. Mine emptied my drains, went to every apt., test, chemo, every emotion that i have and is still here cheering me on and waiting for rads to be over. I love him and he loves me very much or we probably could not withstand all of this.. I have 3 children and none are his ( I lost my 1st hubby to heart desease. and I'm no stranger to the rain, without our complete friendship and trust we would not be at the place we are now.
anyway i am babbling, but the thing i want you to know is that i will be here for you whenever you need me. I am wishing you all the best.
God Bless
jackie0 -
Hi Ksstizme,
Welcome! I
Hi Ksstizme,
Welcome! I know exactly what you are feeling, we've all been there. The first advise that I got was to take a deep breath in and slowly blow it out. Repeat doing this until things start to calm down inside. My next piece of advise is to get a pad and paper and start writing down all of the questions that you have for your surgeon and your oncologist. Then take one step at a time.
I would also make sure that you take someone with you to all of your drs. appts. It's better to have another brain to help remember everything that is said. If you feel comfortable with how your dr. treats you and your questions, then fine. If not, go to another oncologist for a second opinion. Most insurance companies will cover a second opinion. All of the other questions will be answered by your drs. We can give you how certain things and drugs affected us, but we are all different and you're body my not react like mine given the same exact med.
You will also have days where you feel the crying will never stop. This is normal. You have just been told you have cancer. Just remember that it's cancer, it is NOT a death sentence in this day and age.
We will be here for you 24/7 to lend what ever support you may need. You will be in my thoughts and prayers.
Love and gentle hugs,
Donna0 -
Thanks agian to everyonedjteach said:Hi Ksstizme,
Welcome! I
Hi Ksstizme,
Welcome! I know exactly what you are feeling, we've all been there. The first advise that I got was to take a deep breath in and slowly blow it out. Repeat doing this until things start to calm down inside. My next piece of advise is to get a pad and paper and start writing down all of the questions that you have for your surgeon and your oncologist. Then take one step at a time.
I would also make sure that you take someone with you to all of your drs. appts. It's better to have another brain to help remember everything that is said. If you feel comfortable with how your dr. treats you and your questions, then fine. If not, go to another oncologist for a second opinion. Most insurance companies will cover a second opinion. All of the other questions will be answered by your drs. We can give you how certain things and drugs affected us, but we are all different and you're body my not react like mine given the same exact med.
You will also have days where you feel the crying will never stop. This is normal. You have just been told you have cancer. Just remember that it's cancer, it is NOT a death sentence in this day and age.
We will be here for you 24/7 to lend what ever support you may need. You will be in my thoughts and prayers.
Love and gentle hugs,
Donna
Just reading your comments makes me feel better. Knowing I am not alone gives me strength. I will take all your advice and plod along. Tomorrow is my doctor's appointment post surgery and I guess he will then set me up with the oncologist to decide treatment. I will be coming back here daily for my daily dose of encouragement. Thanks :-)0 -
Best of luck to you...Ksstizme said:Thanks agian to everyone
Just reading your comments makes me feel better. Knowing I am not alone gives me strength. I will take all your advice and plod along. Tomorrow is my doctor's appointment post surgery and I guess he will then set me up with the oncologist to decide treatment. I will be coming back here daily for my daily dose of encouragement. Thanks :-)
...for that all important appointment tomorrow. I'll be hoping for the best possible outcome.
Kind regards, Susan0
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