Forum Discussion
ninica
6 years agoMember
37 year old - just diagnosed
Hi ladies,
I have been diagnosed with early stage, grade 2, DCIS in early January (ER+, PR+ and HER2 negative). Since then I had lumpectomy with clear margins and sentinel node biopsy. Sentinel node biopsy found a tiny speck of cancer cell (less that 0.5 mm) and oncologist is pretty sure it did not spread anywhere else and they call it micro metastasis. I have done CT scan and bone scan just in case which are all clear. I was expecting radiotherapy and hormone replacement therapy as a treatment as mentioned by my surgeon. I was totally shocked to find out that oncologist is recommending invasive chemotherapy as a treatment (i believe it is called AC chemo). I am totally scared and petrified and can not come to terms with chemo. Just thinking about it makes me go into panic mode. I have seen another oncologist for a second opinion and he also suggests chemo as a treatment for me purely based on my age and the other indicators which are kind of on border line. I have just ordered Prosigna test as recommended by oncologist. Just waiting for results it's making me so nervous. I have two kids aged 8 and 4 and don't know how am I going to go through chemo if I have to (i know it is totally up to me).
Wondering is there any ladies with similar age and in similar position and what is your opinion on chemo? Like I mentioned I am totally petrified of chemo and how would my body handle it. I am very skinny person and don't believe I would handle chemo good. Even breast care nurse told me I am too skinny for chemo and to try to eat up in case I decide to do it.
Any experiences shared would be greatly appreciated.
19 Replies
- SisterMemberJust joining the convo and I have to say that I think the nurse's comment about being too skinny is a bit bizarre. For what it's worth, I stayed exactly the same weight throughout chemo without doing anything special (it's been after that's been the problem).
As for which one, as @Afraser and @kmakm have said, it's important to ask why the onc recommends that type of chemo. I had AC-T but I know many others have TC - the reasons why my onc chose that one is forever lost to me although I did ask at the time. I do remember that he preferred to use AC-T if nothing indicated a particular need for the other so maybe it just came down to preference.
Believe me that, while chemo for most is no walk in the park, it is manageable. With AC, the first and the last treatments for many people are often the hardest. Do a search on this forum for a list of things to have on hand to make life a bit easier. If friends offer to help, have some practical things on hand to offer. I think you said that you had young kids so maybe school runs, sports runs, play dates - stuff like that. I had teens and pre-teens when I went through it and one of my childless friends went right outside of her comfort zone, drove across town to pick my daughter up from the hospital I was having chemo in, then drove the other side of town to take her to a swimming meet hanging around until I could get there. It meant a lot to me as the meet meant a lot to my daughter. These things can be way more important than a fridge full of food that no-one in the family really likes. If you can afford it, get a cleaner. Use online shopping. Shortcuts in meals won't hurt anyone for a few months.
See if your clinic has recommendations for exercise classes during chemo - it helps a lot. I was fortunate that my clinic was affiliated with a rehab exercise program and my health fund paid for it as part of treatment but depending on where you live, there may be other options (including getting a plan done by your GP) - just make sure that any place you go to is equipped for bc chemo folk. There may also be the YWCA aqua program available in your area - the name of which escapes me at the moment ( @Romla?). If you can't get into an exercise program, just walk each day - some days you may manage kilometres, some day metres might be an achievement - just do it! Look up the Look Good, Feel Better courses as there may be one in your region (not exercise but something positive to help).
That's a lot of stuff for the future that you may or may not want to consider. I'm sorry if it's a bit overwhelming when you're just trying to get your head around treatment but you also might be like me and like to know in advance what to plan for.
My other piece of advice is (and I offer this to everyone), if the medication they give you for the first few days doesn't cut it, don't hesitate to ring the clinic and ask for something better. Find out who you ring if it's after hours. I spent an utterly miserable first weekend because I needed better meds as the Maxolon wasn't working and I didn't know that I could contact my onc for something else. Once that was sorted, I was okay.
Good luck on Wednesday! - kmakmMemberTC is generally given for tumours under 25mm in size with no, or up to three positive nodes I believe. AC is usually given for larger or multiple tumours with or without node involvement.
But I'm not medical, so I agree with @Afraser, it's very important to ask your oncologist to explain their treatment choices for you. You want to be on the same page. K xox - AfraserMemberStarting chemo is scary but look at it as a first step to being well! I can’t answer your question about comparisons, sorry - I was recommended to have ACT by my oncologist, and I did. However your query, which is perfectly reasonable, does beg the question have you asked your oncologist about his/her recommendation? Even in identical situations (pretty rare given the variability inherent in breast cancer), oncologists will have their own reasons for preferred treatment in individual cases - experience regarding effectiveness, tolerance, research etc. You and your oncologist are in this for the long run so you need to understand each other. Chances are his/her research may be answer your question. Best wishes for your first session.
- ninicaMemberHi everyone, Just thought I would let you know I got my Prosigna test results back yesterday which suggest I fall in medium range (almost high range), my score is 38 and anything over 40 is high risk of re- occurrence. So my oncologist suggests ACT chemotherapy. I am booked in for my first treatment next Wednesday. Still nervous as hell about it.There was also mention of TC chemotherapy to me by another oncologist and I am kind of doing some research at the moment to see what the real difference between ACT and TC is but struggling to find relevant info in terms of long term survival and side effects.Anyone here has an advice or done an extensive research for ACT versus TC chemotherapy?
- mtansyzMemberHello,
I was 35 when diagnosed in 2018. I was diagnosed while pregnant, and had my first 3 months of chemo while pregnant, then had baby and went on to have a different sort of chemo for another three months. I found chemo challenging...but somehow managed to get through it...one week at a time. We have two other children, who were 5 and 3 at the time...I let them cut / shave off all my hair before it started falling out...(which they enjoyed WAY to much ;) )
I get what you are saying, chemo is scary...and not a lot of fun.
At the end of the day, its your body and your decision.
My husband took 7 months unpaid leave from work as soon as the baby was born, and he was able to access a government carers pension of some kind...so he become the primary carer for all three kids, while I was recovering from surgery, going through second lot of chemo / radiotherapy. (I'm not sure if you have a partner, but having someone who can step in and care for kids when are feeling a bit rough from chemo can be really helpful!)
I wish you all the best, whatever your decision!!! - jintieMemberYep - you get weighed in before every chemo treatment. They will alter based on your weight and height.
- AfraserMemberJust to reiterate @primek’s point, your chemo dose is calculated on your weight and height. If your weight alters during treatment, your dose will be adjusted accordingly. I don’t have any stats but it certainly appears that more people put weight on during chemo than lose it (I did lose weight and could afford to do so). As everyone says, the first few weeks can be very stressful but things often improve when you and your medical team have agreed on a course of action and you actually start treatment. Best wishes.
- ninicaMemberThank you everyone for your answers and for being so encouraging. I am still waiting for the results of my Prosigna test, it should be ready in about week time. Still nervous as hell about it. Most of you ladies say chemo is doable so I guess I will be able to manage if I have to go through it. @youngdogmum I am even slimmer than you, I am 58kg and have been like that forever plus pretty tall as well, whatever I do I can not put weight hence I am even more worried how to go through chemo if needed. I have also lost 1kg since I found my diagnosis, from stress I suppose as every time I am stressed it affects my appetite.
- jintieMemberMy scenario is similar to yours, except I was 3 years older than you when diagnosed and my cancer was grade 3, multifocal with lymph node involvement. I said to the BC nurse that I was worried about putting on weight. She told me not to worry and said I’d probably lose weight. She was wrong - I put on 8 kilos (most of this weight gain was during taxol and I put on 500gms a week over 12 weeks).
Everyone reacts differently. We all got through it. I think being younger has its advantages. - Hi ninica , welcome to this forum full of information, and understanding on what you are going through and how you’re feeling. stay positive, you can do this...........
Chemotherapy,most of us have been there and you will see that depending on your dose, how it will affect you. But one thing you will notice is that we all got through it, for one I put on around 6 kgs during chemotherapy from all the drugs, never lost .
Side affects affect everyone differently, some of us were able to work and some of us couldn’t.
I suppose it comes down to you in the end and no one can make that decision for you.One thing that I had in my mind was I’m going to throw everything possible at this hideous disease and live with no regrets, that I have done as much as I could to beat this.
Your oncologist and team of specialists would of discussed your case and made a decision on what facts they have in front of them, I listened to what my specialists had to say as hey they deal with this everyday and see the results, me I had no idea! But at the end of the day it’s your decision.
Chemotherapy, yes it has side affects and we all deal with it differently, I just went with the flow, and there is so much medication available to assist with the side affects
Let us know how you go and what you decide, either way we are all her for you .
Be kind to yourself, sending gentle hugs your way.