+ Reply
Log in or Register to participate in these discussions
Chemo or not? On to next steps
rtama
24 Posts

Hello to all the wonderful people who have been a constant support since I joined the community over a month ago. A few weeks back I asked if I should take Chemo or not? and thank you to everyone who shared their experiences and guidance. I have IDC, stage 2, grade 2 breast cancer, ER/PR positive and HER2 negative. I met the oncologist last week and he is now recommending chemo. I emphasized the Oncotype DX test, however, a Mamaprint test was done on my biopsy that resulted in a low score. He is retesting for HER 2 on the tumor to ensure it is negative. According to the oncologist, with being premenopausal and having one positive sentinel node, chemo should be a part of my treatment along with radiation and hormone therapy. He thinks Oncotype is not part of the standard of care. I have been advised of the TC chemo for six weeks. I am starting my treatment end of June (before hitting 8 weeks after the lumpectomy).

I am really nervous, and scared and cannot stop worrying about how I am going to go through chemo and radiation. I am looking for suggestions on how best I can mentally and physically prepare for the next steps. Being a mom to a 6-year-old and caregiver to aging parents, I am hoping I can deal with all that is coming in the next few months.

I was hoping I did not need chemo and sometimes I doubt if I am doing the right thing. I am going through a series of emotions. It is really hard to mentally be strong and positive.

Also, I was given the option to have a PICC line or a port. I do not like needles (am sure no one likes them) however, I have not given thought to other options as these are stressing me out more than needles.

Any suggestions on how I should prepare for my first infusion, and, upcoming chemo rounds.

Thank you!

18 Replies
Mosi
117 Posts

@rtama There are no easy decisions with cancer. Given a choice I would have skipped the surgery and radiation but that really wasn’t an option if I wanted this BC gone. I did not have a port or picc but have had pretty good veins. Lots of fluids at least one day before infusions helped.
When I experienced muscle\joint pain after the sessions the last thing I wanted to do was move. Slow short walks proved to be the best thing for me. Sometimes the walks were just to the kitchen but you do what you can.
If you can before the first round find out from your medical team if something like Claritin is allowed. I found it very helpful with the aches.
We are here with you. Please reach out with any questions. There is a fountain of knowledge and support cheering you on

BEVC
28 Posts

@rtama I am in the exact same situation as you. my mammaprint gave 7yr survival percentages…97% w chemo/hormone therapy and 96% w hormone therapy so my medical onc backed off of chemo, and went straight to radiation. Prior to the mammaprint stage 2, grade 3, she thought For sure I’d be into chemo….got lucky I guess

elle29
1281 Posts

That is quite a different but conventional preventative therapy treatment . I did not get an oncogene nor Mamaprint where is that written to be informed !
Amazing they did do both rad and chem for you , for IDC but a common approach . Many here do hope the toxicity was not strong or low red blood cells tested and for those Vitamin B complex too . I lost making me tired . Some cannot get out of bed and have to rest a while or day or 4 . You were so courageous and which feels worse the treatment or the cancer ? I wondered , so the pple here give you tips or suggest things to take make you more comfortable during treatment . Even suggest what to pack in your bag ! How to read your labs or pathology report was my lack of support I needed . Even when I speak to my Onco I have to refine fine tune my talk to Oncology only ! No general health matters . I then ask my GPO an GP with Oncology training in studies of m2 week crash course, only 2 weeks ! How many years does it take for an On ologist ?

My MacDreamy Onco lol said , it would only be preventative and I asked does the radiation work long term in the blood stream to keep the cancer away from growing spreading . And bc lymph nodes are involved where cancer goes hide and travels too attaching to other organs and spread too .
IDC was removed clear margins with one sentinal for surgery/ lumpectomy Partial Masechtomy done in 1.5 hrs quick in and quick out ! . And which is the First Line treatment for some .
2020 I was IDC then discovered 4 mths of several scans done . Only confirmed but later after PET, that I became MBC . The primary oncologist MacDreamy consult was the only time I say him in person . Who said best not do radiation nor chemo would kill. I guess in exam with his opinion experience as an Onco , it was my general health with diabetes weight factor .Giving me 2 year to live but also in his tender kindness confidently said “we want u to live longer ! “ That was my prayer my mantra ! My focus !

2021 Gave me the AI treatment orally pill form of Ibrance and Aristrozole CDK 4-6 inhibits growth ! Monitored every. Mnth for my wbc cell counts with blood tests and also CT results every 3-4-6 mths now . I suffer similar side effects as other here. But protocol does not allow nor do I get the booster shots to maintain my blood cells from dropping low . My own body must do that from my own bone marrow when I get 7 days off that treatment cycle to recover . I do not know many who do their treatment for 15 months and longer ! I am still on , will be 2 yrs by December /Jan 23 .

2022 OMG 🎊 Celebrating since 15 months on these meds . I was declared NED by 2 Oncologists by CT results proving “no evidence of disease “ and no longer MBC stage 4 ! I am in clinical remission ! But still on treatment of lowered dose and asking for Exemestane combination . I do get weak , got a clot , tired , was very thirsty putting out a lot of fluid , and fatigued by the end of the week careful not to get my hands dirty from outside work or cleaning hired someone to this instead as I hope for my yard terribly neglected . But Eh we need the focus on ourselves to follow the Onco‘s directives ! In care for ourselves .
Lost weight before changing to Exemestane usually a maintenance or drug or Aristrozol most are given when cleared all c gone . And lost 30 lbs or was it 60 math not great . Keep on persevering strong 💪🏻 as u can and when asked by others what to do . Ask for help to lessen that demand of getting possible low infections and be able to rest when tired . Or maybe your all better by now ! Smile 😃

elle29
1281 Posts

Oh and MacDreamy changed my prognosis to 10 years ! It’s funny how they are use to their response to their patients , who ask and challenge more . He was use to hearing I guess many others say treat the cancer with Radiation as a preventative and Chemo ! The Radiation Oncologist asked me how I felt with 2 more found in my lungs I said fine . It’s this kind of reality check they like to draw u in and scares us ! Even the short life prognosis . But the ladies , men here said the reasons perspective in how and wny doctors as Oncos do this . Many here have heard and shared ! Mathematics algorithm s and experience with Morbidity numbers and seen by them losing patients . So let’s just make sure bombard the patients with more treatments . Check their blood cells counts and see if they are suffering low wbc , neutrophils and all those others some even grow larger Macs to make you mor tired sick and weak . He looked at me and I know myself I have diabetes, too my main concern . I am older but have had Osteoarthritis a long time with pain from injury or minor car accident or any injury I get . Know your body , sure tough it out if you can . If they can pump your body with mega dose with little or no effect , your tough , your strong u. On in e yourself . The. Go for it ! But I have heard grown men share they use Saran Wrap to keep their skin on as they shower 🚿 another said after treatment he could not walk up stairs not even a few , he felt he needed oxygen . So he started by getting purchasing his own O2 and climbed small hills , then more to mountains ! This was on U tube . This was from FB cancer page many shared from all over the USA 🇺🇸 and England 🏴󠁧󠁢󠁥󠁮󠁧󠁿 Sharing their cancer experience honestly .
Because we do want to live longer , to defy the odds or the dr saying look we did it , we rang that bell. But that is with encouraged medical supports as our food nurses who care and laugh with you I. Treatment . And sitting there for 6 hours in a chair .And workshops they had for patients in the hospital . Many of did not have from the pandemic , removed , shut down and gone were those supports . Yeh u know 2020 have cancer even my own doctors office did not allow me to see her . It was like the most uncaring staff as security guards were put on reception blasting you to stay out . And then the dr saw us rarely to even do a breast exam palpitation of your lump . And mine was painful ! I had both the surgeon and the Oncologist advocating as other patients with cancer , blasting the Diabetes specialist for not giving me a consult pre cancer surgery even with a pre booked appointment !

My first visit, after listening , I challenged him as an Oncologist I hope , by saying how was Radiation and Chemo going to work on my whole body system in the possible spread , and by lymph nodes or blood cell system . Impossible to target it all . At the end of these months he said how I was a good student . It is only bc of CC and other cancer reading online I did , had to to try understand all this up almost day and night . At first with a broken iPad screen splintered and broken glasses too . You do it bc u have to do it . Somehow my brain consumed it but I could barely write , talk being so saturéd with c information . I stored on my page that CC wanted me to remove in links . Hoping this helps others .

Good News : Cancers as Mets / Advanced that some R suffering here and stay on steady to help others and diagnosed Stage 4 ! Some call terminal now an obsolete word like prognosis I shared with my Onco He agreed & shared back yes we no longer use that word terminal . Even Prognosis and Palliative,have changed in their meaning .

I told him and is so iffy , others here said yes, “ bc doctors do not want to be wrong ! “ or afraid I guess choosing words carefully so as not to be sued !

Now Immunotherapy with proof at Sloan Kettering Hosp New York just made incredible development for many cancers cured in a 6 mth trial of 80 patients , presented by the doctor in excellent results and their cancers were gone ! This was on all media news June 2022 !
If u qualify !

supersu
1170 Posts

@rtama

good morning and thanks for your update. sounds like things are moving along in the right direction for you.

my experience: I was on the fast train to chemo for my breast cancer diagnosis 2 years ago….until I asked about the OncoDx. it was performed and poof! chemo was then off the table…..but here is the funny part…..once they took it away from me, I was super anxious that maybe I actually ‘needed’ it. so I know EXACTLY what you mean, by going through a series of emotions. I think this is normal……

this newer mamoprint sounds like a wonderful tool. I have done some googling and it seems that it covers more markers than the OncoDx…..if you got the low result(s), and then get a confirmed HER test will the chemo be taken off the table???

you have many family obligations, but right now, you are the priority 😘.

re: PICC line - this is perfect if you don't like needles! if you in fact do need access, then an indwelling line will save you lots of needle anxiety, for sure!

let us know how the mamoprint/HER testing turns out….sending all the best vibes from over here.

cheers
su

#mamoprint #oncodx #her2 #treatmentoptions #piccline

Mandy88
8 Posts

I am in an almost identical situation (but stage 1b or 2 depending which Dr you ask!?) My Dr chose not to do the oncotype test as they didn’t want any reason for me to not do the chemo. An entire panel of Drs unanimously agreed. I’ve now finished my third round of 8. It is difficult, but I know it is saving my life. It is giving me as many years as I could possibly have with my young family. I also chose a double mastectomy instead of just the diseased breast bc I am terrified of reoccurrence. If you do chemo, you will need to lean on family and friends for emotional and physical support. I recommend asking for home nursing care if you need it. They are fantastic. In the end it is your decision, but listen carefully to what your Drs have to say. They want to help you. They know you will get through it but it will be a mountain to climb.

I ended up getting a PICC line and it is great. I now receive home IV hydration after each round which helps with my recovery. Hydration is 100% priority! And walk. Force yourself to walk even if it’s just short. Keep your body moving. Before my next round I usually do a laundry blitz and clean the bathrooms so my days are not burdened by every day chores. Buy some ready made meals and don’t be hesitant to boil some hot dogs or make a box of KD. Go easy on yourself! All the best.

rtama
24 Posts

@BEVC

Thank you for sharing. I am so glad that your prognosis does not require chemo. My husband and I went back and forth on the chemo decision due to the Mamaprint scores. With chemo, the recurrence rate is 10% and I think it's my age. Being 45 and pre-menopausal is creating a risk for me. I wish you all the best with your radiation treatment.

rtama
24 Posts

@elle29

Thank you for sharing your journey and experience and wishing the best for you.

rtama
24 Posts

@supersu

Good morning and thank you for your reply. The mama print score is low for me but I think it's my age and being pre-menopause that the oncologist is recommending chemo. The recurrence rate with chemo is 10% and without is 15%. The mama print results do indicate the low benefit of chemo but the oncologist is still recommending it - maybe as a preventative step. It has been really confusing and when the oncologist mentioned chemo in my last appointment, he seemed confident so guess have to trust him.

rtama
24 Posts

@Mandy88

Thank you for sharing. Your situation sounds so similar. My oncologist too told me the same thing that we want you to live another 40 years and that he would not do an Oncotype for me. I so wish we could do without the chemo. Thank you for the suggestions. Please can you let me know how should I enquire about the hydration IV and is it something the hospital would prescribe? If you do not mind, would you share which hospital you are getting your treatment from? And, is there anything I need to do in addition to the first round.

BEVC
28 Posts

@rtama wishing you all the best ❤️

rtama
24 Posts

@Mosi

Thank you for sharing and the suggestions.

supersu
1170 Posts

@rtama

who woulda thunk that 5% was so significant??!! the decisions we make based on numbers are amazing.

BC, (before cancer), I would have said, ‘shoot--5% doesn’t seem worth it'
but NOW that I am cancer girl I would definitely consider 5% a HUGE benefit.

I am glad for you that you have a doctor who wants to treat you so aggressively and completely. I really do hope things go smoothly for you.

there are no doubt many folks following your story; let us know what next steps are when you are able.

cheers
su

#numbersgame #recurrence #breastcancer #chemotherapy

rtama
24 Posts

@supersu

Thank you for your message. I think after cancer even 1% makes a difference if it gives us back the quality of life.

i am not sure how to respond as a general post for everyone but I am going for my first round of chemo on June 28. I believe it is TC regiment.

i need to now prepare for June 28 and months after that.

Cyf
30 Posts

@rtama Hello! I wanted to mention that the nurses/doctors are really on top off the side effects we may get from the chemo. And, while there are lots of side effects, people look to Facebook or ask on sites like this one for help or guidance with their side effects, so there is list of help out there, but my point is that many of us go through the chemo grind fairly unscathed. I have been one of those, both on the TC and now on the taxol. I wish you well but don't let it hover over you or scare you. With the exception of losing my hair I've done just fine with minimal side effects.

rtama
24 Posts

@Cyf

Thanks and I am hoping my care team is good and can help me deal with my fears. I am also thinking alot about my hair. I have thick black and long hair. i do not want to just chop it all off before the treatment starts. Will do it once I start losing them.

Mandy88
8 Posts

Hi there - Yes being premenopausal was a major factor in the oncotype discussion for me too. I’ll be having lots of endocrine therapy after chemo and radiation as well. Straight to menopause for me!
After every round of chemo, my oncologist and I sit down and discuss my symptoms and medications and what’s working/not working. I mentioned to her that I had trouble keeping up with drinking water and staying hydrated for the first few days post chemo because my palette is very affected (everything tastes awful) and I’m nauseous. She suggested home IV hydration which she prescribed to me via CCAC (I’m in Ottawa at the General Hospital). It was all organized through them and they called me when they received the referral to make further arrangements/schedule visit times. They might not suggest hydration for you unless it becomes a problem. Who knows, you may not need it! Prior to your first round, you will need to have your blood work done but I’m sure your Dr explained the whole schedule to you. They will make sure your blood levels are safe before every round. I always try to walk to my bloodwork app to give my white cells a little boost ;) I desperately want to stay on schedule. I hope that answered your questions. Chemo is something that is constantly being tweaked and the Drs are there to help you manage as much as possible. As a side, I also speak with a social worker at the psychosocial oncology program to help me manage my feelings, frustrations and family life. It’s been a great help for me…but to each their own! Take care!

Mandy88
8 Posts

This is so true. Chemo really does affect everyone differently. For me, the first week is brutal, then the following week, I’m 85% my old self. It’s a grind but I know in the end it is worth it!

+ Reply