IF YOU ARE WAITING, please let me to share my experience
Dear Fellow Members:
I started this thread because I know the anxiety of waiting, of being very afraid of not knowing what to expect, where to start, who to approach, and where to find information etc. etc. etc. I felt as if out of the blue, I was struck by lightning!!! After the initial shock on Feb. 26, 2015 confirming I had cancer on my right breast from an MRI, I started writing down everything...
As I was writing these experiences elsewhere, it suddenly occurred to me that I should share them here at BC.org as it happens at each stage, which are: pre-surgery, surgery, post-surgery, pre-chemo, chemo, post-chemo, pre-radiation, during radiation, post radiation, post treatment and so forth. Why? Because when I first came, I was only able to find bits and pieces of information, not an entire journey. And I want to share my journey so those who are new can at least know what to expect later on..
If I can help to alleviate your fear at this point in your life, then I am happy to have contributed. Please bear in mind that since every patient's cancer is different in terms of grade, tumor size, ER/PR, HER2 status, genes and other critical info. that should be the basis of your treatments. Some fellow members may have more serious diagnosis than I, others may have less serious diagnosis. In the end, our experiences and journey will be different. However, you will, at the minimum, be sent for some of these tests I've already done (see under My Diagnosis). So, getting an early overview CAN enable you to prepare for what LIES ahead, and for you to craft your journey THE WAY YOU WANTED...
*** Please remember that this is only one person's journey to give you some idea @!@
*** Scroll down to *** And So The Journey Begins *** if you want to read the details and skip below <Introductory Information>.
*** Scroll down to ***My**Initial**Diagnosis*** if you wish to get a summary of my treatments.
The National Library of Medicine's (NLM) pubmed section have tons and tons of scientific info relating to practically every type of cancer topics and combination that you can read & harness...YES! This effort requires much of your time, and you must do it quickly too...Naturally, you will be feeling very anxious. Who wouldn't? But in your anxiety, reading up will to reduce that anxiety coz you would at least feel you are doing something productive, and adding towards your own knowledge of the what, where and how of cancer and treatment of your upcoming journey..... Also, the National Cancer Institute (NCI) too have many, many more detail specialized (not general) info of cancer than any other sites. They are quite worth your time to visit.
***There is a "NEW" custom cancer treatment which is a current hot topic, with seemingly fewer side effects, called IMMUNOTHERAPY. If this is of interest to you, the link that follows has a very comprehensive VIDEO symposium of this exciting therapy entitled Cancer Immunology & Immunotherapy: Delivery the Promise chaired by the National Cancer Institute (NCI). I genuinely believe it's worth your time watching as it is moving in the possible direction of "custom cancer therapy"...such hope by so many dedicated and passionate immunologists, doctors, scientists and researchers that their work could bring to us cancer patients.....
To continue, I have had 1st consult with my Surgical Oncologist (SO) on March 5th, all the various and necessary tests between that and my Biopsy (March 9th) and surgery to remove the tumor & lumpectomy reconstructive surgery (done simultaneously on March 25 by my SO and the Onco-plastic Surgeon - OPS). They are written under May 4th, 2015 Chemo #2 section below.
I am lucky that all these moved rather quickly at my Cancer Center because all the doctor specialists work as a team here i.e. My SO, OPS, Medical Oncologist (MO) and Radiation Oncologist (RO). I am also fortunate in that everyone of these specialists who saw me are the Senior Doctors of their respective department. My recommendation is that wherever possible, try to find a hospital that has a team of specialist such as mine for it will make your visit far easier to coordinate, as oppose to having to run and drive here and there, which can place even more stresses on you. If it is not possible, then try to plan the location within distance of each other. On Monday, April 27th, 2015, I started my 1st chemotherapy. Details are written below as well.
It may seem like I'm jumping the gun here for you. BUT, I strongly feel that if you have more ideas of this journey you will be embarking on, then I have no doubt that it'd be easier to travel forward. I have included a lot of details that I hope can help you know what you need to do when it's your turn. Some of the terms and names of drugs will seem daunting to you now, but believe me, you will want to learn all these terms, names and procedures very, very quickly. When I first came to this forum page, I tried to find such details of each segment of others' journey, but was unable to. Which is why I wanted to do it this way.
Also, at the very bottom are listed several links for you to go to, including one discussing various oncoplastic surgical methods available for breast reconstruction after lumpectomy based on your tumor location and size...Forgive me, if some of you may find my info too lengthy.
While you are waiting, this very site has a pdf on Your Guide to the Breast Cancer Pathology Report. Please download, save and print it out. It is a terrific guide to keep you up to speed very quickly about your cancer. Keep it by you so you can look at it again and again until you remember the terminologies. This pdf did help me very much to acquaint me of the basics of cancer in the initial leg of my journey. So, I believe it will be useful to you too.
Regardless, I wish you well in your own unique journey. Be Brave. You WILL OVERCOME !!!
MAY PEACE & STRENGTH BE WITH US, & KNOWLEDGE TO GUIDE US IN OUR EVERY DECISION...^!!^
**M Y *** I N I T I A L *** D I A G N O S I S** - A SUMMARY OF INFO
Stage IIA, Grade 3, IDC, tumor size 2.5, 2.6 and 3.0 cm respectively (via MRI, Ultrasound, Mammograpm)
Pre-Biopsy: Had ultrasound, MRI, bone scan (pix at bottom), chest X-ray, full blood test (FBT), mammogram, abdominal ultrasound test done.
Post-Biopsy: Confirmed IDC with some degree of DCI. tumor malignant, ER/PR - (negative) HER2 + (positive 90%), No genetic testing for BRCA1 (BReast CAncer gene 1) and BRCA2 (BReast CAncer gene 2) since there is no family history. Possible lymphovascular involvement.Surgery: Confirmed malignant tumor size 2.5 cm, 4.5 cm taken out with margins, 0/1 Sentinel Node, NO ALND authorized. Chose to have Lumpectomy on right breast via the Round-Block Technique (this is an onco-plastic surgical method where the areola is cut out. Then the tumor is taken out from there, The areola is then sewn back with using dissolvable sutures. This is method is used by plastic surgeons for women who wants breast augmentations too) Healing gradually + beautifully.
Post-Surgery Recovery Time Before Chemo Start: Asked for 4 weeks recovery time for breast to heal before chemo starts. My MO originally wanted me to start chemo in 1-2 weeks, but I declined. I wanted my lumpectomy and reconstructed breast to heal some more first..
Pre-Chemo: Had Full Blood Test (FBT) and MUGA tests done before Chemo #1. FBT and weight + height must be taken every time before each chemo. Follow up visit with MO every 3 weeks to review chemo progress, to discuss previous FBT, and to make any adjustments to treatment plan (TP) where needed.CHEMO DRUGS: 9-12 Weeks of Concurrent weekly cycle of Herceptin + Paclitaxel. Please see my spreadsheet at bottom of this thread, listed in infusion order + dosage amount. Herceptin doses are calculated based one's weight = total dosage. Initial Herceptin dosage (1st chemo) usually higher. Subsequent dosages are lesser and remain the same thereafter. Please ask your doctor to give you the details.. For paclitaxel (a taxane drug) both weight & height are used to calculate your dosages.. After chemo completion, I was sent for a Transthoracic Echocardiogram (TTE) to test for cardiotoxicity from Herceptin.
Post Chemo Recovery Time B4 Radiotherapy: Asked for 5 weeks recovery time before starting radiotherapy. Again, my cancer center is good about not making me start radiation therapy when I was not ready. Since chemo already takes a lot out of our body, I wanted mine to heal as much as possible before proceeding onto the next stage. I strongly urge that you please consider and think through all these timelines. If you are weak from chemo, best to let your body heal first. Otherwise, you might feel overwhelm by it all. Of course, if you feel otherwise, you don't have to take my word for it. Everyone should gauge their own strength and ability... What I'm trying to say is you do not have to accept the start date of chemo or radiation. Let your body be your guide. and never be afraid to push back the timeline so long as it does not compromise your treatment.
PRE-RADIATION: Sent for CT planning scans and tattoo markings to my entire right breast section. A day before actual radiation, had simulation done to make adjustments to markings to ensure accuracy of RT. RADs started on Aug 12, 2015 for a total of 5 weekly sessions only.RADIATION: The waiting for my turn time took far longer than the actual radiation session, which took about 5 minutes each time. It was painless. Each patient had to change into the hospital gown. As soon as it is over, I went to the locker to take out my 100% Aloe Vera and apply them throughout my breast before changing. You may bring freshly cut aloe vera if you so wish. At home, I will apply it everyday and more often if the area feels dry or itchy. If you get radiation burns easily, do it more often.POST RADIATION: I did not have any side effects from radiation treatment. Everything seems normal thereafter. Just waiting for the surgical part (areola) to heal.POST TREATMENT: Was scheduled to each doctor specialist every 4 months the 1st two years, then twice every subsequent year. Must do mammogram every year. No additional pills or drugs given either.
NOTE: I am an American who chose to have my treatment done in Singapore. My insurance covers my treatment there.
***AND SO THE JOURNEY BEGINS ... ***
When I was first diagnosed with breast cancer in Feb 26th, I flew home on Mar 1st to get treatment at the National Cancer Center there. After my 1st consult with my Surgical Oncologist (SO), I was sent for test after test within the first 2 weeks : Bone-scan test, full blood test, Chest X-ray, ECG, mammograms, abdomen ultrasounds, and so forth, followed by Biopsy^^.
Since my SO (a most approachable elegant lady) had to fly to Europe for a conference, she informed me that her colleague, an Onco-plastic Surgeon (OPS) will cover for her for a week. And that the latter will discuss the results of all my tests. At first, my OPS informed me that "most people choose to do a mastectomy..." I was instantly aghast at even the thought of anyone not even attempting to save their breast especially if it is savea. Naturally, I replied that I won't even consider it because my research indicated that the size of my breast in relation to the tumor size & type suggested lumpectomy to be a better alternative, that my SO was already aware of my decision. End of discussion.
Then she presented another option – & that was to do Neoadjuvant** Chemo >> Surgery >> Chemo >> Radiation (**Neoadjuvant Therapy - the purpose of which is to shrink the 2.5 cm tumor).
Having pre-read about the effects of chemo, I declined this option as I did not wish to go into surgery in a weakened physical state. Also, based on my research, since my tumor size is of 2.5 cm, at one location, and my breast is not small, neo-adjvant was not a necessity either. True, I have the most aggressive type of cancer – Grade 3 and HER2+. I had made it very clear during my initial consult with my 1st SO that I wanted breast conserving surgery BCS (aka lumpectomy, of which I had spent many hours reading about prior to the first consult). Yes, I understood that that would be contingent upon whether cancer has spread or not into the Sentinel Lymph Nodes.
>>>> Please read my post entitled " EVERYTHING U WANTED TO KNOW ABOUT LYMPH NODES" below where I have pasted an enlightening and wonderful article by a group of doctors, along with their link.
NOTE: I might have considered neo-adjuvant therapy had my tumor size been > 4.0 cm. Our breast size is among one of the factors determining whether it's advisable to go for neo-adjuvant or not.
^^ Biopsy was a painless 10-15 mins outpatient procedure. First, a local anesthesia using lignocaine was given. Then a 0.5 cm incision was made. Next, my SO used an ultrasound guided fine needle procedure to do the biopsy. The ultrasound is to accurately guide the needle into the tumor to take out 5-6 cores of tumor cells from various angles for pathological analysis. These cores are later examined for the type of hormone receptor for estrogen (ER) and progesterone (PR) (positive or negative), for the HER2 status (positive or negative), for cancer genes and other relevant info. These results generally determine the course of one's (probably standard) treatment. The incision heals within 24-48 hours. In my case, the results came back within 4 work days.
You could always ask your doctor's office to call and inform you of your results, ahead of your scheduled appointment. This then gives you enough time to start your research before your meeting with your SO. If they say they would prefer to wait until you see your doctor to discuss, insists very clearly that they give, fax or email it to you too (nicely). Some office will cite "it is not their policy" and so forth. But you insist on being given because (a) you have the right to it, (b) you PAID for it and (c) you are an adult and they should not be treating you like a child. After you get it, start reading the details, and start getting yourself so well verse in your own case (there's a link below on how to read & understand pathology reports).
I further suggest that you going to pubmed (in NLM) to do your research on standard and alternative treatments. If you spend enough time researching, you may even come across a treatment plan that was used before, and may even be applicable to yourself or your love one(s). That was how I found my treatment plan, from a proven clinical trial that is adopted by the New Zealand Pharmaceutical Agency for cancers similar to mine. If you really want to be proactive and protect your body, that's what you will do. And you will NEVER, under any circumstances, GIVE UP on yourself or your love one(s). That's the committed kind of proactivity you will engage in when you love yourself or your love ones.
Example of possible ER/PR and HER2 combinations are : - - - | - - + | + - + | + + + | - + - | + + -
DO BE sure to get hard copies of results of every test you are asked to do. Keep them in a file in chronological order. Learning to read and understand the results of our pathological reports ahead of time puts us at an advantage in that when we meet up with our doctor, we'd already know what further questions we wish to ask. For me, I quite rather enjoy this part of the learning process.
The 3rd option was presented: surgery >> chemo >> radiation. This was the preference I had in mind all along, after my research. (although at that time, I still wasn't sure about whether I even wanted radiation if I had chemo). So we discussed my upcoming surgery, to be performed by my SO, and breast reconstruction, to be performed by her, now my OPS. She explained all surgical risks involved, type of anesthesia, about SLND, ALND, breast reconstruction details and how she was going to do it and why she elected the method in question, estimated total surgery time, estimated recovery time, and other related info.
In my questions to her about SLND, I discovered that my cancer center's protocol during surgery is this -- in addition to taking out the tumor with an all around 1 cm margin, between 1 to 4 sentinel lymph nodes will also be taken out. It is then tested on the spot to see if cancer cells have spread. That if EVEN 1 sentinel node is found to be positive (cancerous), my doctor(s) will immediately proceed to do a complete axillary dissection. This means that the ENTIRE lymph nodes from the breast upwards to ones' underarm will be taken out. Every BC patient can have from between 20 to 40 nodes, some perhaps even more. That's an awful lot of precious nodes to be cut out of one's body, and NOT a decision I would lightly give without serious due consideration. This is especially critical by virtue of the fact that lymph nodes do not re-generate, and once taken out, would be gone forever!
I think this is how my SO determines the no. of sentinel nodes to remove. If the tumor with margins removed comes back with clear margins, then only 1 lymph node is removed for further testing to ensure that that is so. If the margins are too close to call (meaning cancer has spread more than halfway to margins), then more sentinel nodes are cut out for testing. If those nodes come back negative, no axillary will be done, If, however, those nodes are positive (even 1), then axillary are automatically done unless you specifically not give permission for it (as in my own case).^^^Please refer to the picture below for the location of our lymphatic system. See those green colored bean-shape cells at 45 degrees from the left and right breast towards the arms. Well, that's all those nodes that will be taken out as well as those in the underarms, whichever that arm will be. It's not meant to scare you. Its meant to make you MORE AWARE of what's AT STAKE here. These pictures were taken from MissBennettScience ppt presentation and graysanatomyonline.comFrom all that I have read of axillary lymph node dissection (ALND), it's a very, very scary thing because once the nodes are taken out, they're gone forever, and will NEVER regenerate. In addition, the underarm without the axillary nodes will essentially be weak and your entire arm cannot lift anything over 5 pounds. Also, you cannot have any blood extracted, or infusion or vaccines done to it, and you have keep exercising it to reduce or prevent lymphedema. I was not prepared for that to happen and decided I will do whatever I can to keep my axillary nodes.When my OPS went on to explain how she was going to re-construct my breast (which was quite different from the method recommended in current literature ), and explain how her method** will make my breast look more natural and closer in size to my left breast, I was not really listening because I had thought it would be done that awful way. But when she repeated that it would be quite good, I was fascinated though I really had no idea what she was talking about. I thought well, if she can make my breast looks better than current practice, I wont complain. So I asked her the name of the technique and made a mental note to read up more about it. Thereafter, I was asked if I had any questions, before being asked to sign the Patient Consent Form (for surgery, SLND and ALND clearance).^^^ Now that I have had my reconstructive surgery, I will say that my OPS did a fantastic job on the reconstruction of my right breast. I am a size 38D. After the surgery that took out the 2.5 +1+1 cm = 4.5 cm or 20% (1/5) of my right breast, it is now a 36D (see pix much further below). Can you believe it? God, the method she used, called the the Round Block Technique, retains the natural looks of my right breast. I have a scar around my areola from where the incision was made, and from where the tumor was taken out. But this scar can fade with the application of the Mederma Scar Fading cream, but I have to wait for the incision to heal first before applying. Current literature recommends cutting from the top or wherever the tumor is located, which leaves one's breast with a very ugly pothole and/or distortion, where-ever it is cut out. NOT SO with the method my OPS did. As of this writing, my nipple, areola and breast still retain it's sensation. That's the beauty of this method. I'd be more than willing to send you a picture in my private email if you wish to see it. I gave my SO permission to use pictures of it in any conference presentation she will make in the near future. I think any method that can preserve one's breast beautifully, and make it less distorted is a welcome thing for us breast cancer patients, agree?^^^It has just occured to me that should you choose the flap BCS or other methods where flesh are taken from your abdomen or other areas, please ensure that your lymph nodes in those areas are not disturbed or inadvertently taken out as well. Please check with your OPS to ensure that this does not happen. You really don't want those good nodes "accidentally" taken out because they are really an important part of our lymphatic system and our body. You will see why after you read the link on "Everything U Want to know about lymph nodes" posted below. Note: However, if you have had SLND or ANLD dissection, then doing arm exercises are a must. They helped to facilitate healing your underarm faster, and to reduce and/or prevent the chances of lymphedema. It is to your advantage to start exercising the arms the very next day after surgery. Your physiotherapist will likely be the one to show you some of these exercises before your discharge. I only stayed a night for my surgery. For some people, you may feel painful after surgery and thus may be reluctant to move... So, olease do just a little at a time than none at all as lymphedema is not a pleasant condition to have. "Lymphedema aka lymphatic obstruction, is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system, which normally returns interstitial fluid to the thoracic duct and then the bloodstream." - from Wikipedia. I have posted alternative exercise pictures link under the Fitness and Getting Back in Shape section of this Forum Page that I found that could be useful.Truth be told, I did not sleep at all for 2 nights about the ALND consent. I went into the NLM website under PUBMED and read for hours and hours about SNLN and ALND. I found new literature stating that even if 1/4 (meaning one of four) , 2/4, 3/4 sentinel nodes are positive DOES NOT NECESSARILY JUSTIFY AN ENTIRE AXILLARY lymph nodes dissection (i.e. removal) under certain conditions^^^. These articles provided strong and compelling explanation and alternatives to ALND. With that in mind, I called and left a message with my SO's nurses (she was in conference in Europe remember? ) that I wanted to cancel the ALND portion of the patient consent form. ^^^ These NCI & NLM link offers more articles about sentinel and axillary nodes:http://www.cancer.gov/about-cancer/diagnosis-staging/staging/sentinel-node-biopsy-fact-sheethttp://www.ncbi.nlm.nih.gov/pmc/?term=sentinel+lym...
To further continue, My surgery was scheduled for 1500 hours on Wed, March 25. My message to my SO was on Sunday, March 23. I even wrote her an email to make sure she got my message. My SO returned my call immediately after her Monday morning surgery. Naturally, she asked why. I told her my findings and my concerns. She respected it, and asked me to think through and give her my answer on the day of surgery. Come surgery day, just before I went under, she asked** if I still wanted to cancel axillary clearance. I said yes, and she brought my consent form, cancelled the ALND part of consent, had me initialed it in front of the surgical team, and told me they will still give me the care that I deserve, and that we can re-visit this issue after results of the SNLD comes back in a week's time. If I not cancelled, then the SNLD results would be instantaneous. I said that I understood it all. I felt so relieved for having done that before I was placed under general anesthesia. I 've also requested my SO to please take a picture of my tumor as I want to know what the sucker looked like (see below bottom)
Tumor and reconstructive surgery were performed consecutively that day by both my Surgical Oncologist & Oncoplastic Surgeon respectively. It saved time, pain and money. Surgery took about 2.5 hours with another 2 hours recovery time. I awoke about 5 hours later in my ward. My SO stopped by to check on my breast again before leaving. I experienced only a low grade pain that was quite bearable. The nurses came to check on me periodically. Had a good hospital porridge dinner. Had to pee in a bedpan over the next 2.5 hours or so until I could go to the restroom myself. My SO's residents came early the next morning to check on breast. She too came with her senior resident in her morning ward round. I felt relaxed and so well cared for throughout.
**If my SO did not bring up the subject of the ALND cancellation, then that means my SO didn't get my message. So it is up to me to bring the subject up. Do not be afraid to do so when you are absolutely convinced of your decision. As a patient, you have every right to make changes to any part of any procedure you are uncomfortable. I wanted my surgery to proceed, sans ALND, that's all. I'm not encouraging you to change your mind without rhyme or reason. You must take the time to weight in the consequences.
Post surgery visit a week later with my 1st SO gave me the best news I've ever had. I had clear margins and the 1 node taken out was negative. I will say too that that 2.5 cm cancer grew sometime during last August 2014 when I felt the unusual itchiness and growing lump in my right breast, but chosen to ignore it. I have myself to blame for postponing my bi-annual mammogram because I was studying for my GRE, and doing other things. Once that was over in January this year, then went to have it checked up in mid Feb 2015 while I was in Beijing. Ultrasound showed tumor. Had MRI done confirming cancer. So I flew back home beginning March. Well, better late than never.
Excuse the detour, but back to what I was saying. With this cancer, I don't intend to be passive where my body is concerned. Like many of you, my world was shattered and all the plans that I had been making had to be put on pause. For instance, I was so looking forward to getting (hopefully) my Ph.D in Education Leadership scholarship at Harvard University for the 2015-2016 school year to which I have applied, and joining my daughter back in the States, amongst the many other ambitious plans I have. So getting news of breast cancer sucks! sucks! sucks! big time. After the initial shock and some tears, I decided from that VERY moment on, that I wanted to be in charge of this part of my life's journey. That it was no time for self-pity. I knew that I will be as pro-active as I can. I will not accept everything that was recommended to me without understanding why, without checking on its validity. I will guard and protect MY BODY at all times. No one will do this job better and with more enthusiasm than I, ourselves.
That is not to say that the majority of doctors in this field are not doing their job.They are, and to the best of their abilities, and within the confines of the available time they have. Oftentimes, they are so very busy having to deal with so many details of so many different types, stages, grades of cancer patients and procedures that I believe they are overwhelmed, thus making it even harder for them to keep up too. The adoption of standard treatment plans are thus inevitable.
I'm not saying that that is bad. I'm saying that by helping ourselves through reading and researching from as many legitimate sources as we can, and even recognizing bias reports and trials especially from the tons of information available from the National Library of Medicine (NLM), we are doing ourselves a very important favor. We can engage in intelligent conversations with our very busy SOs, MOs, ROs and all the specialists we will have to deal with throughout this entire journey.
It is not short a journey by any means. It is emotionally, physically and psychologically taxing, exhausting and at times stressful. So, isn't protecting our physical selves worth our time? Isn't knowing what's being done to us and put into us better for us? I do realize that reading medical reports and clinical trials are daunting or difficult for some people. but please, please, please try, try harder. Really, it's not so bad after all. If you treat it as another learning process, something to acquire to your benefit, you may just find this world of medicine interesting, albeit not by choice.
It is important that you involve your spouse (or family) and children (depending on their ages) in this process. When you educate yourself, can you then help them understand the process and what they can expect to happen to you to prepare them so that they, in turn, can provide the support you will need. You must try To be their anchor wherever possible. If not, ask your spouse or family to be the anchor for the family. If you're having lumpectomy or mastectomy, read it first yourself and then explain to him/them. If you hold yourself together, you are giving them strength as well. Believe that you are capable, believe in your own strength, just believe. If your spouse or family member can accompany you during your consult with the SOs, MOs and other specialists, that would be great. Always try to make a list of questionnaires to bring along. Listen to their recommendations, but asks why.
If you have been reading up, you would then have some idea of what you'll want? If what is being recommended is not what you want, asks about your alternatives. Great doctors will listen to your concerns, and address it, NOT push it aside or insists that only his TP will work for you. In the beginning, my MO kept harping on my Grade 3 HER2+ cancer aggressiveness which I was already very aware, and wanted me on the 12 months Herceptin plan. But because I read and done my research (quite thoroughly I believe), I wouldn't budged. I explained my points, and why I wanted the plan I had chosen. I sent him articles based on clinical facts and statistics that supported my decision. We "conversated" via email for about a week, back and forth until we both reached a compromise that are acceptable to us. I am grateful for the patience my MO extends to me, as did my 2 SOs. Throughout it all, I feel like a part of their team, and that I can approach them anytime. I am truly blessed our paths crossed. I hope you too will find the doctors who will give you the care you deserve. Do not give up on your search. You would instinctively know during the 1st consult if the Dr. you are speaking with is the doctor who will care for you. I went online to look up the credentials of all the doctors at my cancer center, their education and work background, their experiences should be clearly stated in their website.
From my experience, I have found that when I can engage my doctors, they love it! And they are willing to discuss my findings with me, and more willing to come to a compromise with me. Great doctors would, anyway. There will be a few doctors who will feel defensive or hostile when we start asking questions. If that is the case, I besiege you to find another doctor who won't have this attitude towards you. You m-u-s-t ! Your life thereafter depends on it. It will make a BIG difference on how you will experience this journey, and you'll want to make the most of it.
Doctors who treat you as a member of his team, NOT just a number, will make this unpleasant journey, PLEASANT, so pleasant that you won't dread going in for tests, for surgeries, for therapies. This journey is something that you are unlikely to forget for the rest of your life because the scars will be there to remind you of it. So, as strange as it is to say this - you'll want it to be an unforgettable yet pleasant experience that won't cause you to be sad, or frustrated or bitter. At the end of it all, you want to be able to say, "YES, I've conquered and survived it ! I'm stronger and it wasn't so bad after all." You paid for it, for the entire treatment, one way or another. So, you have the right to expect professionalism and empathy at all times and not be treated as a sub-species of the human race.
How to find these doctors? Ask around – your friends, colleagues, neighbors, relatives, even from forum pages,and your GPs. That means there are a lot of legwork that must be done before embarking on this journey, before your first visit to good , patient specialists, including your commute time, their availability after office hours, what timeframe can you can expect to get answers to your questions and so forth. You'll want to find a medical practice where most of the doctors and their nurses who will go that extra mile to make your journey less frightening. Whenever anyone recommends any specialist doctor to you, ask what it is about them that make them special. NEVER be afraid to ask, ask, ask, and clarify until you are satisfied. NEVER, NEVER EVER short change yourself, no matter how tired you are, please.
But you too must do your part to educate yourself since doctors cannot explain everything to you as they allocate certain amount of time for each patient. You could find which days are less busy for them so they'll have more time should you think you have lots of questions. I generally like to get the first appointment in the morning or after lunch or the last appointment of the day, wherever possible.
Finally, I am only sharing my experience thus far with you. There will be members out there who may disagree with my decisions and what I have written They have every right to be since we are all different in our cancer stages, grades and so forth. We all choose what we are most comfortable with. So, if you are here to want to share your experiences, I truly welcome it because it enriches my life. But if you are here just to criticize, I respectfully ask that you refrain from it. Please go start your own thread and offer another perspective.P.S. Please leave me a comment to let me know if the above section is helpful to you. Thank you.
***S T A R T *** O F *** C H E M O T H E R A P Y ***
April 13, 2015 - Ist Consultation with my Medical Oncologist (MO) to discuss treatment plan. We discussed much about the treatment he wanted me to be on, and the treatment I want to be on. Eventually, he asked me to think over our discussion and to give him an answer of the TP.
April 15, 2015: Sent for a MUGA test and Full Blood Count Test (FBC or CBC)April 20, 2015: 2nd Consultation with MO to review the results of MUGA and FBC. Given OK to proceed to chemo. We finally agree on a TP as listed below.
***APRIL 27th, 2015: START OF CHEMOTHERAPHY # 1***
Initial Duration: 4.5 hours (including pre-chemo questionnaires + pre-medication infusion)
Treatment Plan (TP)::
12 weeks weekly cycle of concurrent Herceptin + Paclitaxel (the synergies of these two drugs have proven to give better results for HER2+ patients per FinHer clinical trial. Details reasons given below under Chemo #2). Dosages for Herceptin is based on one's weight (@ 2mg/kg), and for paclitaxel based on one's weight & height (@80mg/m2 - there's a formula which was given to me after I asked about it).
(I) Pre-Herceptin Medication: Panadol (2 oral) + Diphenhydramine (25 mg, aka Benedryll) 30 mins, including recovery time. The purpose of these is to help patient deal with the chills and cold that Herceptin can caused.
(II) Herceptin: 60 mins (initial dose, 4mg/kg. Subsequent dose 2 mg/kg). It was OK for me except that during the last 15 mins of infusion, the benedryll wore off and I did indeed felt cold and chilly in my body. The Panadol caused my brain to be a little groggy. So, I made it a point to reduce panadol to 1 pill and to request for continue benedryll in subsequent treatment so that I don't feel the chill and cold coming on in my body. (Note: if you are allergic to any medication, then please speak to your MO for alternatives drugs)
(III) Pre-Medication for Paclitaxel (Ranitindine 50mg, Diphenhyramine 25mg, Dexamethasone 20mg) - When asked, it was explained to me that these pre-medication help to reduce/prevent allergies of paclitaxel in patients. (30 mins + 30 mins recovery time). I found these to really help reduce side effects for me except that the dexamethasone (aka steroids) caused sleeplessness in the week following Chemo #1.
(IV) 30 mins before the start of paclitaxel - Icing of both hands & feet to reduce or prevent neuropathy. My MO recommended that I do this though it's optional. But I have to bring all items myself. (see pix below of item lists). I wore double layer food preparation gloves, and soaked my hands in a basin of water filled with lots of frozen blue ice. I also wrapped each of my feet in plastic bag before soaking them in another basin of water with sufficient frozen blue ice to last me through 2 hours** (30 mins before paclitaxel, 60 mins during, and 30 mins more after infusion end). He said it worked on the majority of his patients, although it didn't work on two of his patients. He did say it was optional, that it's somewhat inconvenient because I have to bring all these items myself. What's a little inconvenience if both my hands and feet come out of chemo without loss of sensation, right? I explained to the nurse how I wanted it done since only my MO recommends it to his patients. I rang for the nurses in the chemo room to help me with taking the melted blue ice ones out and replace it with new ones from my Coleman cooler box (please feel free to send me a private email if you want pictures, instructions and list of items) or if money is no object for you, you could buy hypothermia gloves and slippers at Amazon.com. They cost about US$100+/pair, and you will need at least 2 pairs of each. I prefer to go with the cheaper version. I did go to the NLM and found trials confirming this icing effectiveness. If you want to have this article, either email me or go to the "Venting About Neuropathy" Thread where I have posted it.
(IV) Paclitaxel (80 mg/m2) - 60 mins infusion. That rate of infusion can sometimes affect how you feel. If you feel uncomfortable at any point of any drug infusion, it's OK to call the nurse to ask that the rate of infusion be slowed down. I did that during my pre-Herceptin infusion of benedryll. When it was done too fast, my head hurt. After the adjustment, the hurting stopped.
(V) 30 more mins icing of hands and feet.
During chemotherapy, we are allowed to drink to keep ourselves hydrated, and to eat (I brought crackers) between infusion. I always bring along a 1.5 litre bottle of green bean soup that I had boiled earlier that morning. In traditional Chinese medicine (TCM), green bean soup (no sugar added, beans crushed to extract max nutrient then discarded) is believed to help to detox our body. I drink it between infusion. During infusion, we will go to the toilet several times. The nurses where I have my chemo are helpful, patient and wonderful. At this cancer center, there are two rooms for chemo, one with 76 comfortable seats and another with 28 seats that can be reclined any way you want. I requested to be scheduled in the smaller room. In front of every seat is our very own TV to watch any channels we want, with our own remote and call buttons.
When my infusion was over, I was anxious to go to the toilette for the 4th time. I stood up, forgetting that having soaked my feet in cold, cold water for so long, it would be numbed and red (not painful). I almost fall over but someone caught me. Lesson learned. Then I gulped down the rest of my green bean soup. I will say that I drink at least 4-5 litres of fluid every day. It seems to lessen any side effects. Luckily, my tastebuds did not change drastically. Though I read it did for many people here in the forum pages. I believe drinking lots and lots of fluid helps to reduce the change in taste as well.
I was grateful that my sister was with me. When we got home, it was dinner time and I was quite hungry. I had a bowl of baby oatmeal with dried cranberries/raisins/honey. Then I gulped 1/2 liter of water. Then proceeded to have 2 large slices of cranberries/walnut multigrain bread, drank another 1/2 liter of water, took my immune system booster supplement, brush my teeth, and gargled my mouth with biotene (effective and important to have) to prevent sore mouth. Then to bed. I slept like a baby.
Tuesday, April 28th - got up late not knowing what to expect. I was happy that I felt normal. As always, I drank 1/2 litre of water, then made a bowl of baby oatmeal (my usual morning breakfast food). My sister made a protein and fiber rich smoothie for me. Took several supplements: Immune System booster, red wine/grape seed extract (anti cancer oxidants) and fish oil (for heart, mind and joint health). I spent the day relaxing, reading online, watching TV and going for an hour walking and exercising during late afternoon. I found my appetite was still good. Ate mostly fruits, veggie soups, porridge with quinoa and fish (mostly Salmon or Red Snapper) or noodles. NO raw salads until chemo over. Dont go to any Japanese restaurant was an advice given to me. My gf did even though she didnt eat sushi. She ended up somehow with stomach upset and was hospitalised for 3 days. Watched Masterchef, then did my usual nightly ritual - shower, brush teeth, gargled mouth, then to bed. Slept well.
Wednesday, April 29th - got up early. Ate as usual. Same routine. Went for a walk and do arms swingin exercises by the river. So far, still feeling and eating OK. Same routine. Same supplements. Went to bed around 2300 hours. Woke up in the middle of night to pee. Felt a hint of stinging. Might be the chemo settling in...
Thursday, April 30th - Got up feeling an ache all over my body...finished eating my oatmeal, and drank my smoothie...appetite still good, taste buds still unchanged. Let's see what the rest of the day will bring...(decided to lay off fish oil next time the day before, day of and day after chemo after reading about an article about it in this site). Continue taking immune system booster supplement. Got up several times at night to pee.
Friday, May 1st- Early morning, hint of constipation. Had usual breakfast and 1/2 litre water. Had noodles late morning. 1st bowel movement. Noticed bright red blood in stool water. Drank more water. Late morning, went for 2nd bowel movement. Again, blood in stool. Drank more h2o. No pain, didn't panic, but email my MO about it (Labor Day holiday today, so don't expect him to reply soon). @ Noon, had 3rd bowel movement. This time, not constipated but blood was darker in color, pieces of red muscusy chunks like those one used to have during heavy menstration. Email my MO again. Drank some more H2O. Went to lie down. Just gotup to update this. Will see what happens.
Saturday, May 2nd - Had 2 bowel movement this am. Again with blood in stool...called hospital chemo nurse. She suggested going to the hospital's emergency, which I did, at about 10am.... Wow, what along wait with so many people waiting. Finally, after 3 hours, got to see a Dr. After checking my bottom, he said I have a few small hemorrhoids in my colon. He also took blood samples to do a Full Blood Count. Gave me a prescription called Proctosedyl Ointment to apply just before bedtime and after a shower. I did it Sunday night since the Pharmacy was out of stock on Saturday.
After waiting for 2 hours, blood report came back. Everything's normal! Yipeee! So, I don't have to go for a blood test for my upcoming Monday Chemo #2. So that's good...except that now, I need to go for a colorectal follow up in 2.5 weeks time. Also got a text reply from my MO who is on holiday. He suggested the same, and didn't think it would be serious. Filled him in on my status.. I just love all my doctors at this hospital. BTW, Sunday morning's bowel movement and thereafter has had no bleeding. So the Proctosedyl Ointment worked!
Note1: My girlfriend who had cancer 10 years ago said she regretted not taking the immune system booster whereas her girlfriend with breast cancer did. She said that she gets infection easily whereas her gf does not. So I took what her gf recommended to her. The ones She got was extremely expensive. My older sister found a comparable supplement called the agaricus blazei immune system booster. Read research on it. Seems to work on mices. Japanese pharmacy sells them for same use too.
Note2: I read somewhere that taxanes drugs like paclitaxel/docetaxel causes our nails to be sensitive to light. One patient painted her nails with dark color nail polish on both her nails and toes, and did not get any cracked or darkened nail. She recounted that on the last day of her chemo, she forgot to repaint her nails the night before. When she got out of treatment, and got home, one of her nails turned dark and cracked. So, I'm going to follow this advice faithfully and see how it goes, and will report back.
Note 3: My doctor said that by Treatment 2 at the earliest, and Treatment 3 at the latest, I should see my hair falling. I had long hair before, but had cut it short. Then I saw a lady in the chemo room had the same short hair as mine. But hers have already started falling in blotches. So, I've decided to go for a crew-cut next Tuesday, after my Monday T2. I'd rather not get up finding batches of hair on my pillow. I'm not afraid of hair loss coz I know they will come back...
Note 4**: When I asked my MO why I need to wear double layer plastic gloves on my hands and feetwhen icing, he said it would make soaking in the cold water bearable. But said I could try it out without and find out for myself. I found his advice to be absolutely true..
Below is a list of neuropathy preventing items I bring with me to chemo each week. Except for the Coleman cooler, you can probably get all these items from the 99 cents store. They are, from left to right:
1) Food gloves (double layers for the hands),
2) Roll of vegetable bags (one for each foot, secure with velcro),
3) Velcro tapes (for securing to prevent water from getting in) -
4) Blue ice (I got various sizes because I wanted the water to be extremely cold. eg 6 large ones that last 4-5 hours, medium size ones that last about 3 hours and the soft plastic ones that last 2 hours),
5) Rectangle square plastic basin for icing both hands (which sits on my lap over a folded blanket - yeah I sit in an upright position where my chair is angles at about 100 degrees. I can still talk to my neighbors or sleep. It's not uncomfortable for me),
6) Round or rectangular plastic basin to soak and ice both my feet in, and
7) 2 quarts Coleman cooler box to keep the blue ice frozen - the Coleman is useful because I am petite. So, I lay the Coleman on its side with the lid facing outwards should I need more blue ice). Then I sat the round plastic basin on top of it before soaking my legs. This put my feet in an extremely comfortable angle/position. Now before I do my icing, I will go to the restroom first. During this part, I may have to go to the restroom as well. So you'll probably need the help of the nurse. But since our large restroom inside the chemo room is within a few seconds walking distance, I can go myself, along with the IV stand. But the nurses and health care attendants are very quick to come to my assistance if when they see me getting up by myself. When they are busy, I don't bother them.
Note 1: Since Herceptin infusion is given last, I will call my sister an hour before so that she can time correctly to leave our home to bring all of the above stuff. That's because I want the blue ice not to melt too early. Our home fridge was too small to freeze the blue ice. Luckily just in front of our apartment is the Supermarket. They have a walk-in freezer. I went and spoke to the Manager, explained my situation, and he kindly allowed me to put in Coleman with all the blue ice the day before so my sister can pick up it just before she leaves for the National Cancer Center. This works out very well as it's only once a week. After my 9 weeks treatment, I went and ordered a large cheesecake for him and his entire staff to thank them for being so kind towards me.
Note 2: It seems like a lot of things to carry. But you only need to carry 2 pair of glove to double layer it, and a pair of vegetable plastic bags (thick ones). The blue ices would be in the Coleman, and the gloves, vegetable bags, Velcro would be on top of it, along with a handwash cloth to clean any splashes I may inadvertently make). The pastic basins are stacked together in a large bag. When you buy them, check to make sure the size comfortably fit both your hands and feet. You can buy any shape you want.
Note 3: If you think this is a hassle, then feel free to buy the hypothermia gloves for hands and feet. You will likely need 2 pairs of each. They cost about $99 - $105 per pair. So, if money is not an issue, then, yeah. But I do like the cheaper version because the water can be really cold. Actually because I put on 2 pairs of gloves, it act as an insulation so it's comforting cold. Same for the feet. When infusion is over, I continue with icing for another 20-30 minutes. Then the gloves and veggie bags are discarded together. I try be considerate and not make a mess because the nurses are extremely busy at this center. If I get water on the floor, when I'm all clean up, I'll call for the attendant to help mop the floor. And I'll certainly clean up whatever other mess I've made before leaving, including folding the blankets they've given me to keep me warm and place them on the chair before leaving.
Note: Both feet are standing on 2 pieces of blue ice below with more pieces above it to ensure the feet are totally soaked in cold water. Both feet are covered with plastic wraps.
***CHEMO #2: MONDAY, May 4th 2015**** Duration: 3.5 hours
All went well as listed in Chemo#1 above except that:
Pre-medication for Herceptin was reduced to 1 Panadol, with Diphenhydramine (benedryll) remaining at 25 mg. I read in this forum pages that some sisters here cannot tolerate benedryll. If that is the case, please discuss with your MO on an alternate pre-medication. Again, the purpose of this pre-medication is to reduce chills and colds you may experience during the Herceptin part of the infusion. It has worked well for me, so I wanted it to continue. And it did worked well yesterday too.
My hair are still there…the falling hadn't happen yet. I had long hair but had it cut short back in March. I was supposed to go for my crew cut today, but decided to wait and see what happens next. I must confess that I am not unduly worried about hair loss. I read that most people's hair starts falling between the 2nd and 3rd Chemo session. My MO said so too. I supposed it's vanity that stopping me from getting the crew cut done this week. And I wanted to take more pictures before my head goes all commando on me involuntarily. I also thought I am in no hurry to join Charliz Theron in all the fun in that department. Yeah, I've got my 7 headscarves waiting to be adorned LOL @!@ Is it too optimistic to hope that the hair wont fall off? Hehe...time will tell and I shall be back to share it with you..
Note: I read that wearing cold caps during chemo may reduce the chances of one's hair falling out. My MO confirmed that to be so, athough it was too cold for a few of his patients. If you can tolerate the cold, then try it if hair loss is worrisome for you. At least something positive. Yeah!!
My taste buds have not gone crazy on me, yet. My appetite is still good, and food flavors have not changed either. Matter of fact, I gained about 1.5 kg between Chemo #1 and #2. I suspect the reason my taste buds have not changed is because I drink at least 4 to 5 liters of
water, fluids, soup, fruit juices or combination thereof everyday. During chemo sessions, I would drink up to 1.5 liters between infusion. Whenever I feel my mouth going dry after chemo, I would drink at least 0.5-1.0 liters of water. The reason our mouth gets
dry is because the chemo drugs are soaking up fluids from our body. So we replenish it to hydrate ourself to prevent or reduce side effects. If one's taste buds changed during chemo and one cannot stand the taste of water, try sorbets (no ice cream or dairy based products), freshly squeezed juices (I heard citrus works every time - one must try to find ways to put whatever fluids one can into your body, seriously!). Sure, one'll go a-peeing often, and that's good coz one's detoxifying.
It seems the standard protocol at this Cancer Center where I am at (they have something like 180-250 cancer patients a day!!) that they only give these pre-medications on one's 1st treatment. If one does not show any symptoms of Herceptin allergy, they do not give them on subsequent treatment. But since my Chemo #1 went very well, I asked that this pre-medication continue because during the last 15 mins of Herceptin infusion, I felt cold and chilly as the benedryll have worn off. I talked to a few patients sitting around me during check-in. They told me that they felt so so chilly during their subsequent treatments without realizing that they could ask for this pre-medication's continuance. See, a little knowledge goes a long way, doesn't it?
Now, just behind the registration counter is their pharmacy department which dispenses all the drugs and dosages one gets after they checked one's weight/height for that day (yes, we have to go and weigh ourselves at an automated machine located right next to the waiting reception for correct dosages to be calculated for you). Every treatment has different dosages which means charges are different too) . Also, 2 hours before every chemo session, we have to do a Full Blood Count test to ensure that our WBC, RBC, platelets and other things are within acceptable range for chemo to proceed or be postponed. I always bring my excel spreadsheet and go and talk to one of the Pharmacists (they have like 10 in there) to confirm my day's dosages and infusion time for all my drugs, and that my previous request for the pre-herceptin medications are noted in their system. The Pharmacists here are really good about things like this. Naturally, they will always on be the phone to let my MO knows about my request(s).
It seems many cancer patients don't do this, but I made it a point to create an excel spreadsheet (see pix below) listing all the weeks, types and dosage of my preliminary Treatment Plan (TP) when discussing these with my MO to work out a final TP. Originally, my MO wanted to put me on the 1 year Herceptin TP, whereas I wanted to get the FinHer 9 weeks concurrent Herceptin and Docetaxol TP/ That's because being a HER2+ Grade 3 Breast Cancer , I discovered that the synergy of Herceptin + a taxane drug is more effective than just Herceptin alone. The TP I wanted also happens to be the recommended plan that the New Zealand Pharmaceutical Agency aka PHARMAC offers to all NZ early stage breast cancer patients who are HER2+. However, due to "political pressure" from the PM's office and other self-interest groups, PHARMAC now offer the 12 months Herceptin plan. This request must come from both the patient and their doctors. I think this is wise because then the onus would fall back on the MO + patient should they choose to do the longer TP, and that could result in cardiotoxicity to the heart.
Based on PHARMAC's comprehensive comparison research analysis of 5 MAJOR clinical trials (namely NSABP-B31, BCIRG-006, HERA, N9831 and FinHER), they have found the FinHER TP to be the MOST OPTIMAL TP for HER2+ patients in terms of safety, efficacy and reduced cardiotoxicity to patients. Of course, it's cheaper too because of the shorter duration versus that of the others that wants patients to go for longer treatment plans, which are 12 months to as long as 24 months. Example of my Chemo #1 session, not in NZ$, was about S$2100 at the initial dosage was 4mg/kg for Herceptin + Paclitaxel at 80 mg/m2. There are 8 more sessions to go before radiation kicks in after a 5 weeks rest from chemo. See, I told you I'm pro-active, even about things like this (again see details in sprea