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Giving up before starting

13 REPLIES 13
lovemama
Member

Re: Giving up before starting

This lengthy reply disappeared 3 times and this is my 4th time trying to post. 8-(

Hi Vaneysha, I just want to share the experience of my primary BC diagnosis.

My 1st diagnosis was in 2011. ER+, HER2 +. My 2 kids were 4 and 8 yo. I had mastectomy before chemo/radiation(standard in the old times). In my 1st onco meeting after surgery, been told my cancer was grade 3(the most aggressve grade) and at stage 3A. Very serious but curable. All visible cancer and 27 lymph nodes (out of which 8 were cancerous) were removed. Based on my cancer grade and stage, chemo was given for killing the possible microscopic cancer cells (not visible on scans) which were floating around in the body. My chemo started 4 weeks later. In between, I had a (whole body) CT scan, a MRI on the affected breast and a bone scan. All were clear and had no evidence of further spread. My original chemo regime was 6 cycles ACT with Herceptin + 15 cycles only Herceptin. My chemo was delivered in an aggressive schedule- chemo every 2 weeks (what so called Dose Dense therapy). On the day of my 2nd infusion, my needle was in, my onco called into chemo room saying the MUGA scan which was done after 1st infusion was showing my heart function had dropped to 46%. He requested to stop that infusion and changed my regime from ACT to 6 cycles TC. I was lucky. SE were minimal. Mouth ulcers, ear infection, swollen infected finger, 0.0 WCC counts happened one time only and cleared up in max. 1 cycle with the help of various meds. My appetite and energy level was quite OK. My husband was out of town for 6 months on my 1st chemo day due to an emergency occasion. Except I called volunteer drivers to drive me to and from hospital for treatment. I had no problem to drive daily and took care of my kids.

After all my active treatment, my onco did tell me I had ZERO cancer and my tumor marker was close to 0.

 

Re the Herceptin, I understand it may be more efficient when taking with Taxol.

 Below table extracted from an article which was created by BC cancer agency of Canada Provincial Health Authorities.

 

AGENT

EFFECT

MECHANISM

MANAGEMENT

anthracycline chemotherapy

increase in trastuzumab- induced cardiac dysfunction

negative inotropic effect on the heart

avoid use of anthracyclines concurrently with trastuzumab

paclitaxel

1.5 fold increase in trastuzumab serum levels

mechanism unclear; animal studies report a 2 fold decrease in trastuzumab clearance

monitor for signs of cardiac dysfunction

 

 

Re nutrition during chemo, my mom was given the "PROSURE for patients with cancer-induced wight loss" when she was too weak to eat and might not be able to finish the chemo. But, PLEASE check with your medical team before you take any.

 

 

 

lovemama
Member

Re: Giving up before starting

My lengthy reply disappeared twice. This is my last try to post....

Hi Vaneysha,  I want to share my first BC diagnosis experience.

My first diagnosis happened in 2011. ER+, HER2+.  My 2 kids were 4 and 8 yo. I had mastectomy surgery before chemo and radiation. In my 1st appointment with onco, been told my cancer was grade 3 (the most aggressive type) and in stage 3A. Very serious but curable. All visible cancer and 27 lymph nodes (out of which, 7 were cancerous) were removed. Based on my cancer type, grade and stage, I was given chemo to kill those suspicious cancer cells (not visible on scans) which might be floating around in my body. I started my chemo 4 weeks later. In between, had a (full body) CT scan, (breast area) MRI and bone scan which showed no evidence of further spread. Due to the grade and stage, my chemo was delivered in an aggressive schedule - every 2 weeks (so called, Dose Dense therapy). My original chemo regime was total 6 cycles of ACT with Herceptin then 15 cycles of Herceptin only. However, on the morning of 2nd infusion, when the needle was in, my onco called into the chemo room saying the MUGA scan that was done after my 1st infusion was showing my heart function had dropped to 46% since chemo started. He requested to stop the 2nd infusion and afterward, changed my chemo from ACT to 6 cycles TC. During the whole chemo period, I was very lucky, SE was kept at minimal. SE like mouth ulcers, ear infection, swollen infected finger, 0.0  WBC count, etc. all were cleared within max 1 cycle with the help of various additional med. My appetite and energy level were quite normal and at full. Due to an emergency occasion my husband was out of town on my 1st chemo day for 6 months. Besides calling volunteer drivers to drive me to and from hospital for treatment. I had no problem to do grocery shopping and some light daily housework.

Re nutrition during treatment, my mom was given "PROSURE for atients with cancer-induced weight loss" when she was receiving treatment in hospital and was too weak to eat. Besides, In Taiwan and HK, this kind of nutrition supplement may be suggested to patients for temporarily boost up the energy before immunotherapy. Definitely, please, please consult your medical team before taking any, in case.    

https://nutrition.abbott/uk/tools-for-patient-care/nutrition-and-you/cancer

Re hercepton, my understanding is it s more efficiency when taken with paclitaxol.

Extracted from an article which was created by BC cancer agency of Canada Provincial Health Authorities.

AGENT

EFFECT

MECHANISM

MANAGEMENT

anthracycline chemotherapy

increase in trastuzumab-induced cardiac dysfunction

negative inotropic effect on the heart

avoid use of anthracyclines concurrently with trastuzumab

paclitaxel

1.5 fold increase in trastuzumab serum levels

mechanism unclear; animal studies report a 2 fold decrease in trastuzumab clearance

monitor for signs of cardiac dysfunction

ps. Though not sure if there is any link to my SBC, since my SBC diagnosis in Aug last year, I have been so regretted not to take the Taximofen daily per instruction but instead 2-3 times a week. And I even didn't take any for whole 2 months before my SBC. I thought Taximofen might not be really needed as after I finished my chemo and radiation treatment, my onco told me I had ZERO cancer and my tumor marker was close to 0. Ahh

lovemama
Member

Re: Giving up before starting

OMG, my lengthy post disappeared.

Hi Vaneysha, I just want to share the experience of my first diagnosis.

My 1st diagnosis was in 2011. Her+, ER+. My 2 kids were 4 and 8 yo. I had surgery before chemo and radiaion (in those old times). During the first onco appointment after surgery, been told my cancer was grade 3 (the most aggressive grade) and at stage 3A. Very serious but curable. All visible cancer + 27 lymph nodes (out of which 8 had cancer) were removed. Due to my cancer type, grade and stage, was suggested chemo  to kill those microscopic cancer cells (invisible on scans) which might be floating around in the body. Chemo was started 4 weeks later. In between, I had a (whole body) CT scan, a bone scan and a (breast area) MRI. All were clear and no evidence of further spread. My original chemo regime was 6 cycles ACT with Herceptin + 15 cycles (only) Herceptin. Due to my cancer grade/stage, my chemo was given in an aggressive schedule -  every 2 weeks. (so called Dose Dense therapy). However, on the day of my 2nd infusion, my onco called into the chemo room saying the MUGA scan taken after the 1st infusion was showing my heart function had dropped to 46%. since my 1st infusion. He then requested to stop the infusion on that day and changed my chemo from ACT to TC. I had minimal side effects during the 6 cycles TC. Mouth ulcers, ear infection, swollen infected finger, 0.0 white blood cell count all cleared within max one cycle with the help of various additional med. My appetite and energy level was quite at full. Due to an emergency situation, my husband was out of town on my first chemo date and came back after 6 months. I only called the volunteer drivers to drive me to and from hospital for chemo. Mainly me and my 77 yo mom took care of my 2 kids.

Re nutrition during chemo, my mom was offered the nutrition supplement "PROSURE for patients with cancer-induced weight loss" when she was receiving cancer treatment in hospital and was too weak to eat. Besides, in HK and Taiwan, patients may be recommended nutrition supplements for boosting up energy before immunotherapy. However, please and please check with your medical team before taking any, in case. 

https://abbottfamily.com.sg/products/page/prosure-powder

Re Herceptin, my understanding, it is more efficiency when taking with chemo.

Below extracted from an article which was created by BC cancer agency of Canada Provincial Health Authorities.

 

 

AGENT

EFFECT

MECHANISM

MANAGEMENT

anthracycline chemotherapy

increase in trastuzumab-induced cardiac dysfunction

negative inotropic effect on the heart

avoid use of anthracyclines concurrently with trastuzumab

paclitaxel

1.5 fold increase in trastuzumab serum levels

mechanism unclear; animal studies report a 2 fold decrease in trastuzumab clearance

monitor for signs of cardiac dysfunction

 

PS. Though it may not link to my 2nd diagnosis, till now, I am still so regretted not taking Tamoxifen daily per instruction but instead 2-3 times in a week. I even had no tamoxifen for two whole months just before my SBC diagnosis. After finished all my active treatments in 2011, my onco told me I had ZERO cancer and my tumor marker was almost zero.  I thought the tamoxifen may not be really needed. 8-( 

Louie604
Member

Re: Giving up before starting

Hi

have you any more details on the clinic in Birmingham please re the immunotherapy? 
many thanks

MaggieLiggett
Member

Re: Giving up before starting

Hi,

I had Breast Cancer ER+ HER2- 10 years ago, had lumpectomy, re-excision and then Mastectomy as no clear margins.  Now 10 years later a lump back in the reconstructed breast.  Awaiting results of CT scan to see if has spread then further excision, which will now destroy the reconstruction, followed by radiotherapy.  Wish they had offered radiotherapy 10 years ago.  For the Lady wishing not to have Chemo, yes it is very invasive treatment, but perhaps it will prevent a recurrence.  Of course, it may not, but I am sure they wouldn't suggest it without good reason.

Lady34
Member

Re: Giving up before starting

Hi Vaneysha

perhaps join the December chemo starters group on here. Many positive posts. I Enquire with my hospital consultant about immunotherapy where your own anti cancer cells are taken from you and reinjected so you are fighting cancer yourself. Unfortunately my hospital don’t offer it yet but there is a centre in Birmingham for this. Just an idea. 

I started my chemo on Friday 6th that was yesterday feeling good today. All the best. 

Check out the group xxx

Ostrich_Kat
Member

Re: Giving up before starting

Hi Vaneysha

 

i completely get what you’re feeling I was the same, couldn’t, and still can’t get my head around being told ‘yey the surgery was successful you don’t have cancer anymore ... oh but by the way you have to have chemo’

 

altho I’m slightly different as it had spread to 1 node so I can rationalise that cells could have spread in the fluid and be lying dormant.

 

i am in the same mind set digging my heels in about the 3 weeks of daily radiation they are proposing after my chemo .... radiation causes cancer - I don’t have cancer now so why would they blast me with cancer causing lasers!!


you have to do what Is right for you and noone  can force you in to anything, but weigh up if it was to come back and you havnt had the chemo etc how would you feel?

 

i have started chemo on 27/11 and so far feel ok other than a sore nose - bit random - and tiredness

 

i have gone with the cold cap, I also love my hair and really do not think I can rock the bald look. So I’m going to do everything on offer to try and stop from losing my hair. It’s still too early to know if it is successful but here’s hoping

 

im sorry this **bleep**ty experience has caused you to relapse with anorexia, I can’t pretend to understand how that is affecting you but I do understand the need to be in control when through this whole process I have felt so completely out of control of what is happening and decisions being made.

 

make sure you do seek support I also understand how unhelpful the ‘make sure you eat’ comments are to me. because I am slim people feel the need to tell me to eat, I actually have a really healthy appetite and I don’t need people to tell me to eat.

 

good luck in your journey, I hope you find the answers you need to rationalise the treatment being suggested and that you can move forward x

 

Vaneysha
Member

Re: Giving up before starting

Hi seabreeze 

 

Thank you so much. I'm in weekly and sometimes twice weekly contact with my very brilliant GP already and she's very aware of my situation. I was referred a while back to the perinatal mental health team simply because I have a baby and they were probably the quickest available help. However they are obviously completely the wrong team for me. I was also referred to a psychologist via the cancer team who I saw once, she wanted to see me again but I was (still am) in an adamant "I won't be leaving the house unless it's literally to get chemo" phase, this was about a month ago now and the chemo has kept being delayed for various reasons. My gp has re-referred me to her, as well as another psychiatrist. So it's just waiting really. I still don't want to have to go out to endless appointments on top of the actual chemo (and apparently now also heart issues) it's like a full time job with all these appointments, and juggling childcare is so difficult.

I don't think I'll ever get out of this spin. I just want a quick resolution but with herceptin treatment lasting a year and then tamoxifen for 5-10 years, my life is never going to be the same and I don't think I'll ever get over that. X

Seabreeze
Member

Re: Giving up before starting

Hi Vaneysha,

 

Totally understandable that you are feeling anxious, your diagnosis is still very recent and it takes most of us awhile to register and adjust to such news and the changes and worries it brings. You are clearly still in the full whirl of it all. I'm sure things will gradually start to settle a tad, however given the level of anxiety you mention and previous anorexia it really does sound like it would be good for you to get some counselling support and speak to the nurse at Breast Cancer Now. 

 

Perhaps you could speak to your GP about whether there is a specialist cancer counsellor you could be referred to. From my own experience I found that being referred by the hospitals breast cancer team was much quicker than the rather long wait for generic counselling upon referral by the GP. If you haven't done so already worth mentioning your anxiety and past anorexia to your GP to see if that helps speed up your referral.

 

Deep breathes and one day at a time,

Seabreeze  X

 

 

Vaneysha
Member

Re: Giving up before starting

Thanks everyone for your really informative replies. 

I did see the PREDICT scores for 15yr prognosis. The chemo increases prognosis by 11%. The surgery alone made it 57%. I found the surgery fine and I don't have a sickness phobia but more generally I don't want to feel ill for so long and have my life dictated around someone literally poisoning me every week. I have been diagnosed with major anxiety since the cancer diagnosis but I do also have longstanding mental health issues. I at one time had anorexia and I have now relapsed, quite fast, and knowing that I "have to keep eating" during chemo is a challenge in itself, and is further fuelling the eating disorder. I have 3 v young daughters and I'm so upset that Christmas is effectively ruined because of this (I was diagnosed on my birthday as well) but mostly just devastated that this has taken me away from my girls, emotionally I'm just not myself any more let alone if/when I start chemo. Before my diagnosis I was so happy, I had a 4 month old baby, and then within a few days I'm on 4 types of medication for my mood and now another one for my heart, I hate taking so many drugs.

I know they're only wanting me to take the chemo for the best of reasons but it just seems so barbaric, all of it. I am seeing my GP on Friday so I am going to ask about the lorazepam, that's not the first time I've heard it mentioned so thank you. I have been on diazepam for almost 2 months now and I think it's stopped working so well now so I think time for something new. 

So much rests on the scalp cooling working. It's literally the difference between me getting out of bed and not. I hate when people say these things for flair but it genuinely would be enough to tip me over the edge emotionally and going to some dark places. Yet it's the one thing no one can predict, no one can guarantee success.

I think I will call that number tomorrow. I'm currently in limbo in terms of psych support, I'm supposed to be getting referred but heard nothing and meanwhile I'm really getting lower and lower mentally. I'm in a weird situation as my treatment is all private but in many ways the NHS would probably be better, I'm sort of stuck between both when it comes to counselling and mental support.

You are all right in saying I need to do what I feel comfortable with. I'm an instant gratification kinda girl so not getting chemo might alleviate immediate anxieties but I definitely would regret that choice in the future, every annual scan I'll probably be a complete mess, so doing this now will at least alleviate some future anxieties. But I just don't know if I'm currently strong enough to handle what is to come and what I have to go through. 

Thank you all for your replies. I'm really pleased to hear of positive scalp cooling stories. I do have a wig on standby but it's a wig, and I really resent the very idea of being forced to wear one if my hair falls out. I love my hair and it really makes all the difference to how I'd function if I lost it. 

Susanmanchester
Member

Re: Giving up before starting

You may not lose all your hair . I didn’t and I wasn’t on my own . The cold cap often works  and I was so scared like you of losing my hair . You just have to go with it . You are in your thirties and chemo gives you a much better chance of long term survival . I am 62 and I had no lymph node spread and HER2 negative which is less aggressive and a relatively small  cancer . It is not recommended unless necessary and I do not want to frighten you but cancer cells can travel through your system bypassing nodes . That is what adjuvant chemo is for . It is not pleasant but it could save your life . Please think carefully before giving up 
Seabreeze
Member

Re: Giving up before starting

Hi Vaneysha,

 

You sound like you are really spinning fast at the moment. Really feel for you.

 

I'm sure other forum members who are better placed to help with their experience of chemo will post soon. In the meanwhile, with the mission of helping slow the spin....

 

There is always the personal choice factor, and, in my view, making decisions is best done when you are fully informed.

 

While clear margins from lumpectomy is good, and it not being in your nodes is really good, and reduces the chances of cancer being elsewhere in anyone's body, it is possible for small cancer cells to hide dormant in the bones. Chemo would help to ensure that any cells which may potentially be present get zapped. I was stage 2 when diagnosed, oestrogen positive (hence 10 years Tamoxifen), not in nodes, and was told chemo was not recommended although they also said I was borderline. I went with what they advised. 3 years later I had a secondary scare....to the level of reports saying "highly suspicious" of large bone mets, which after a rather mega stressful few weeks turned out to be old fractures I had never realised I had. During that time I went over and over in my head thinking they told me I was borderline, maybe I should have actively asked for chemo. Clearly we can't live our lives covering every eventuality however thinking through how we would feel if different future scenarios occur can sometimes help our decision making processes. 

 

Personal decision again, but if you think it would help you weigh up the pro's and con's in a more informed way, you could ask your oncologist to talk you through the statistical survival averages for the average woman with your type of bc, age, stage etc. While the figures are all based on averages, so don't factor in any other health conditions (or whether you are an international marathon runner!), some women find it helpful to be able to see the averages for 5, 10 and 15 years post diagnosis, with/without chemo (and with/without hormone therapy etc). Clearly not everyone wants to know such information and that is also fine and understandable.

 

Hair - you might find it helpful to do a separate post entitled directly along the lines of the cold cap. I did meet someone on my bc journey who was about halfway through chemo, was using the cold cap and while her hair had thinned she still had what looked like a full head of hair. I have no idea on proportion of women who find it works or helps, but would suggest the nurse on the Breast Cancer Care phone line may be able to help talk you through this and your other concerns and feelings about chemo.

 

A friend of mine was diagnosed with breast cancer a few years after me, stage 3, oestrogen +ve, and was adamant she didn't want chemo. She's highly into yoga, prior to bc she had never taken painkillers or medications, and felt very strongly about it. I know she had a few conversations with the oncologist team and ended up changing her mind and having chemo. She got back to work after and is doing well.   

 

Besides calling the nurse at Breast Cancer Care, most hospitals provide counselling for those with bc. Some even have specialist clinical psychologist in cancer care. I saw one who was absolutely fantastic. It might be worth considering, just to talk it through with someone who's more impartial?

 

I hope the spinning slows down soon,

Sending hugs,

 

XXX Seabreeze (5 years on and feeling a tad like an imposter for posting in the chemo strand, but given my secondary scare it seems relevant to decision making)   xxx

   

Jaybro
Member

Re: Giving up before starting

Hi Vaneysha 

 

What a hell of a situation you’re in. The only person who can decide about your treatment is YOU. Obviously your oncologist recommends it for good reasons. Obviously your husband wants you to do it for good reasons. But you will need to do what is right for you. Bear in mind we are talking about a disease. It is no-one’s fault. If the disease returns, you’ve taken a risk by rejecting the additional treatments but there’s no blame attached and there never should be. It would be a good idea for you to ring the number at the top tomorrow - the nurses are fantastic and well-informed.

 

If it can help, this was my experience. Don’t read on if it would annoy you - I’ve said the important bit - ring the nurse and TALK. When I was diagnosed over several weeks, I went into meltdown. I am phobic with GAD and panic disorder and all I cared about was that having a general anaesthetic meant I’d be sick. I couldn’t do it. I was at the point of breakdown when something switched off in my head and I felt kind of numb. I got through surgery on autopilot (and wasn’t sick). The results were bad and I was told chemotherapy was now necessary, as opposed to an option. Again, meltdown. Chemo = vomiting (my phobia for 50 years). With the support of the oncologist and an amazing breastcare nurse, I was shown round the chemo suites, didn’t see anyone vomiting, we found solutions to all my fears (including lorazepam before chemo) and I agreed. I was terrified, panic attack after panic attack. Then again, something switched off. I decided that I was going to have to trust others, put myself in their hands and get through it. I kind of detached myself from it all. 6 months later, I’m here and just about to post about hormone therapy!

 

If fear is driving you, there are ways round it, such as my onc prescribing 2 lorazepam for each treatment and supplies of anti-nausea meds and everything else to try to ease me through. The treatment is preceded by preparation to prevent reactions and I found the whole thing quite relaxing (lorazepam?).  Everyone responds differently to chemo so you can’t know whether you’ll be the one with fatigue, the one with sepsis, the one who vomits... there’s not much chemo can’t cause if you’re unlucky. Those are the stories we hear. How many people come on this forum to say how easy their chemo is? Some of us would be very unhappy. So we tend to hear mostly about the bad but most of it is bearable and is for a set time. Today I chatted at a meeting with someone in week 2 of her second cycle, pink cheeked, managing the staircases, talking animatedly - I could have felt pig-sick with jealousy but I’m really happy for her. She’s had one bad day. Huh, I should be so lucky! 

 

Hair is a very important issue for some women. It often becomes the focus of all our fears. Please don’t use it as your reason for not having chemo. What use is hair if you’re ill again? I knew it would grow back so I wasn't bothered and it’s thicker than ever. I had a cute buzzcut (no 6) but never actually lost all my hair and rarely wore my wig, despite it looking great. Losing my eyelashes was harder and even harder, for me, was losing pubic hair. I felt infantilised. We all respond differently. But it’s all bearable and it does make a difference - every treatment helps that bit more. 

 

You said there’s no part of you that’s willing to have chemo - yet you’ve agreed to one session so there IS a part, even if it feels small. You’ve also posted here and I suspect a lot of people will encourage you to go ahead with it. Maybe that’s what you’re looking for? Or maybe you want just one person to say you’re right? Talk to someone who knows - the nurses here. They may help you see your dilemma in a different way which will help you arrive at the right choice. I wish you well, whatever lies ahead.

 

Take care of yourself,

Jan x

Vaneysha
Member

Giving up before starting

2 months ago I was diagnosed with stage 2 grade 3 IDC, HER2+ and weak ER+. I'm 33.

Surgery was good, successful lumpectomy, clear margins, had not spread to lymph nodes.

Ive been resistant to having chemo since the beginning. They told me right away that this would be my treatment but I've kept resisting. Eventually gave in (really, really reluctantly). I do not have cancer any more. They removed the lump. It hadn't spread. The only reason I'm being told to have chemo is because of the HER2.

Chemo was meant to start weeks ago but first I freaked out, so they delayed while I spoke to oncologist again. Then was due to start today but it turns out I also have a heart issue (and my port needs replacing which is on Friday). Chemo now due to start next week.

I DO NOT WANT TO LOSE MY HAIR. I don't want to get sick. It feels like massive overkill getting chemo (was supposed to be 4x EC then 12x weekly paclitaxel, they've since cut the EC out). I don't want it. I hate messing people around and I've been digging my heels in for weeks over all this. I was actually happy when I was told about this heart issue as the Dr said no way to chemo, although this now seems not to be the case after all. I felt like I had a good excuse.

I was hoping for reassurance about scalp cooling which I will be doing but no one is giving me any reassurances. I know there are no guarantees but I just wanted hope. 

I'm now considering braving ONE chemo session out of the 12. But I'm pretty sure the hair damage would be done after 1. 

There is literally no part of me that's willing to have chemo but I feel immense pressure from the hospital as well as my husband. Like it'll be my fault if the cancer came back and I didn't have chemo. The cancer could come back even if I did get chemo. So I don't really know what to do. 

Feeling really desperate now. I really really really don't want to have chemo. I don't see the benefits outweighing the negatives of it. So my only compromise is to have one session and then say I tried, but I can't carry on. I don't want to have herceptin and have my life revolve around that for a year. I don't have cancer and I don't want to feel sick. I don't know what to do. Sorry this is such a long post, and I don't even know what advice I'm looking for. Rational me knows chemo is "best" but the cost to me far outweighs the supposed increase in prognosis. I can't put myself through this especially when the goal is so unclear. The cancer is already gone. What is the goal???? It feels like overkill.