Forum Discussion
Adjusting to bad news, staying hopeful, changing habits
Hi,
I am a 44 year old mother of two girls, 3 and 7. Was diagnosed with breast cancer on Tuesday evening after a mammogram and ultrasound in the morning. On Wednesday I saw a specialist who sent me for biopsies and scans. On Thursday afternoon I learnt that I have HER2 positive BC in my right breast (3x3cm with two smaller tumours nearby), and one lymph node biopsied because it was enlarged was also cancerous. A lump on the left was benign. It does not appear to have spread to bones, pelvis, liver etc however there were two 5mm nodules in my lung that might be BC. I am hoping they are something else but have to be prepared in case the cancer already is stage 4. I remember the doctor said it was grade 2-3 but not sure if that is the same thing as stage 2-3.
I have somehow lost the reports, so I can't look over the details until they are mailed but I have an appointment on Wednesday with a different specialist to plan treatment. I am glad that things are moving quickly but am still reeling from the news and wish the appointment was sooner. I think I will be having preadjuvant chemo and/or targeted treatment, followed by a mastectomy of the right breast in several months (with optional rebuild), however I have not met with the oncologist so am not sure what to expect.
I should have gotten to a GP weeks ago as I had noticed hardness over many months (which I had thought was related to it being dominant for milk production) and had a sore breast in early July, however because I was breastfeeding and fairly ignorant of BC I mistook the symptoms including a swollen lymph node for mastitis. Only when all pain went way and I noticed the boob seemed bigger and misshapen with a prominent lump did I get myself to a doctor. Waited a week and a half for the scan that showed it was as suspected a malignant carcinoma. Strange thing is it only started hurting again after I learned what it was.
I don't know much yet but am trying to learn a bit without scaring myself too much or googling into the night. My youngest daughter has weaned herself, and on the night of the diagnosis she accepted bedtime without breast, understanding that I have sick boobies and the doctor said we should stop. In the middle of the night she was desperate to breastfeed, and I allowed this briefly. That is the last time I fed her, and she has been proud of herself for giving it up but has wanted to kiss it and hug it today.
Next move is for me to give up smoking, a bad habit of mine for many years off and on, which is not easy when it has been a response to stress and I have been quite stressed at times. It must be done, as I understand that it increases the risk of metastasis (if it has not already happened) and I wouldn't want to invite another cancer along right now. But I am trying to be gentle with myself when I occasionally light them only to put them out shortly thereafter. I hope to eliminate this habit fully by Wednesday. I have to clean up my diet and prepare for the treatment. I was a lifelong vegetarian until my early thirties however I have eaten a tiny bit of fish in the past ten years. I eat lots of fruit and veg. However I do have too many sugary things and processed stuff so I need to cut the crap out of the shopping list.
Emotionally I have been struggling a bit and I should arrange some counselling to work through my feelings. My mother and friends have been amazing, my husband has been a good support but doesn't like to see me crying, which I think is just a normal thing from time to time in such a circumstance. I am being open and honest with the kids and have been giving them lots of love and sweetness. Honestly I am sometimes very scared but I am trying to be strong for myself and for everyone around me.
Sending love and understanding to others with BC, and those who have recently been diagnosed, it's pretty tough to take, huh?
I am a 44 year old mother of two girls, 3 and 7. Was diagnosed with breast cancer on Tuesday evening after a mammogram and ultrasound in the morning. On Wednesday I saw a specialist who sent me for biopsies and scans. On Thursday afternoon I learnt that I have HER2 positive BC in my right breast (3x3cm with two smaller tumours nearby), and one lymph node biopsied because it was enlarged was also cancerous. A lump on the left was benign. It does not appear to have spread to bones, pelvis, liver etc however there were two 5mm nodules in my lung that might be BC. I am hoping they are something else but have to be prepared in case the cancer already is stage 4. I remember the doctor said it was grade 2-3 but not sure if that is the same thing as stage 2-3.
I have somehow lost the reports, so I can't look over the details until they are mailed but I have an appointment on Wednesday with a different specialist to plan treatment. I am glad that things are moving quickly but am still reeling from the news and wish the appointment was sooner. I think I will be having preadjuvant chemo and/or targeted treatment, followed by a mastectomy of the right breast in several months (with optional rebuild), however I have not met with the oncologist so am not sure what to expect.
I should have gotten to a GP weeks ago as I had noticed hardness over many months (which I had thought was related to it being dominant for milk production) and had a sore breast in early July, however because I was breastfeeding and fairly ignorant of BC I mistook the symptoms including a swollen lymph node for mastitis. Only when all pain went way and I noticed the boob seemed bigger and misshapen with a prominent lump did I get myself to a doctor. Waited a week and a half for the scan that showed it was as suspected a malignant carcinoma. Strange thing is it only started hurting again after I learned what it was.
I don't know much yet but am trying to learn a bit without scaring myself too much or googling into the night. My youngest daughter has weaned herself, and on the night of the diagnosis she accepted bedtime without breast, understanding that I have sick boobies and the doctor said we should stop. In the middle of the night she was desperate to breastfeed, and I allowed this briefly. That is the last time I fed her, and she has been proud of herself for giving it up but has wanted to kiss it and hug it today.
Next move is for me to give up smoking, a bad habit of mine for many years off and on, which is not easy when it has been a response to stress and I have been quite stressed at times. It must be done, as I understand that it increases the risk of metastasis (if it has not already happened) and I wouldn't want to invite another cancer along right now. But I am trying to be gentle with myself when I occasionally light them only to put them out shortly thereafter. I hope to eliminate this habit fully by Wednesday. I have to clean up my diet and prepare for the treatment. I was a lifelong vegetarian until my early thirties however I have eaten a tiny bit of fish in the past ten years. I eat lots of fruit and veg. However I do have too many sugary things and processed stuff so I need to cut the crap out of the shopping list.
Emotionally I have been struggling a bit and I should arrange some counselling to work through my feelings. My mother and friends have been amazing, my husband has been a good support but doesn't like to see me crying, which I think is just a normal thing from time to time in such a circumstance. I am being open and honest with the kids and have been giving them lots of love and sweetness. Honestly I am sometimes very scared but I am trying to be strong for myself and for everyone around me.
Sending love and understanding to others with BC, and those who have recently been diagnosed, it's pretty tough to take, huh?
67 Replies
- At least today I got the Paclitaxel in (hopefully will start working unlike the AC), and hopefully next week the Herceptin will have been approved and can be a part of the treatment plan, 7 weeks after my aggressive HER2+ cancer was identified. Finally!
I had the cold cap and some buckets of ice for my hands and feet. Many of the nurses seemed amused by my efforts to counter the neuropathy and nail and skin problems but once I got used to it it was okay. Played scrabble and had to keep taking my hands out of the ice bucket to play but then they would go back in and I alternated.
I believe they have to petition the drug company to get Perjeta for me on compassionate grounds as its not on the PBS. If I can't get it that way I will consider selling my jewels or extending the mortgage or taking my super or borrowing from my dad (or a combination) to try to get it into my treatment plan. Even for a few percentage points better chance that I will survive and not have it recur or metastasise I think 40K or 60K or whatever it costs would be worth it. My kids need a mother. My husband was saying even if we have to sell the house to pay for my treatment we should. I really don't want to cos building it was such a labour of love but its true cancer makes you look at life and wealth differently. You can't take it with you!
I was told my white blood cell count today was extremely high (10) when it was 1.6 one week ago when I went to hospital. Mysterious. They asked if I had any infections but I can't think of anything major apart from a wisdom tooth playing up a bit and a couple of sore nails. I do have a slightly runny nose though.
I feel like this chemo will be a bit easier, the mouth taste is less bad and I'm not feeling nauseous. Yay! - Oh that's a bugger @kabash !! You are having a hard time of it just now. I hope it all settles down & you get the appropriate responses from your treatment xx Take care - big hugs coming your way xx
- Thanks for your encouraging words @lrb_03 I think it might be docotaxel, hercetin and perjeta that they will be planning for me, which does seem like a more suitable approach to my particular cancer. I have done a bit of reading and wondered why they started with the AC, but this does seem to be a standard approach (to save the herceptin for later when the cancer is reduced a bit).
I will remain hopeful that this new line of treatment will work for me in helping me to have a pCR or at least for it to be reduced enough to become operable and to clear it from the nodes. Your friend's experience does give me some hope.
Earlier in the day I saw my counsellor and she was commending me on my strength but also suggesting that I might be doing a bit much thinking and maybe I needed to connect with my feelings a bit more. I think in light of the crying tonight she was totally right. I must have been burying my fear and my worry. It has been good to cry. Stoic schmoic.
On a brighter note I have quit smoking a month ago (right before chemo) and it is so great to wake up and not be immediately driven to an unhealthy behaviour by a raging addiction. I have also been eating well every day, big salads and lots of vegetables of all kinds and a bit of fish. I have also been raising lots of little seedlings from seeds and getting so many yummy things into the ground and in pots, and plucking radishes and strawberries growing on my roof garden. It has been a great distraction. A friend is coming to chemo tomorrow and we will play scrabble all day (my other raging addiction!) so hopefully tomorrow will be a better day all round. But if I need to cry, I will. Thanks again to everybody in this forum who has made my journey a bit easier and made me feel that there is care around from people who have been through similar experiences. - Hi @kabash, that's a normal reaction to news of a type that you don't want.
A friend who started chemo about 6-8 weeks behind me received similar news. We were both have a different cocktail to you, FEC-D. After 2 cycles of FEC she was told she'd had minimal response. They immediately commenced her on docetaxol (simlilar to paclitoxol) and she had 4 cycles of that instead of 3. She ended up having a complete pathological response.
I'm not saying this to imply that it will happen to you or give false hope, but to say it can happen and you might also be lucky.
Have you had any Herceptin yet? If not, that is what your cancer will respond better to, from my reading.... I'm not an oncologist, or even a doctor.
We can't be stoic all the time
Take care - Today I had another super hard day. My port won’t draw blood but it seems to be fine to put the chemo in. Chemo is meant to happen tomorrow. Had an appointment with the breast surgeon and she gave me the bad news that after reviewing my MRI scans it seems that the AC chemo has been ineffective in reducing or downstaging my cancer. Also the bad news that I do in fact have inflammatory breast cancer. Although this was alluded to earlier it is the first time I got this as a proper diagnosis, one month into treatment.
I had felt like it was getting smaller and better but no whilst it feels a bit softer the tumour/cancer does not seem to have shrunk at all. So I have no idea what they will be putting in my semi functioning port tomorrow.
It has really upset me but at least I think I will be soon getting the targeted treatment, but maybe not tomorrow as it has to be approved by Medicare first.
I also had a trip in an ambulance last week cos I thought I might be having a heart attack, but it turned out it was just very bad heartburn and gas caused by eating way too much pasta. The heartburn drug made the nausea so much better. Anyway I have no idea what the oncology plan will be but it will hopefully involve Herceptin and Perjeta and hopefully my inflammatory/ HER2+ cancer will respond better to this.
The oncologist said if the cancer wasn’t showing progress they might switch to a surgery first plan however the surgeon said this would not serve the interests of my survival well at this stage.
I cried on the tram. Couldn’t help myself. Crying is public and in private tonight. Hadn’t cried for a whole month until this evening but it’s like I am letting all my feelings out. Thought I was being so strong and stoic but there’s only so much one can take. - @kabash my port took three goes (3 needles and endless fiddling :s ) to get blood drawback on my second AC. It has been exemplary since, 11 chemos, touch wood, so I’m hoping yours is likewise!
- @kabash Sending you lots of love & hugs your way. Life is certainly a whirlwind for you juggling family, treatment & arranging appointments. We all need secretaries at this stage to make that part simpler!! Sounds like you are having a rough trot at the moment and having a few bad days which is totally normal. Hang in there & keep positive. i reckon you are doing very well all things considered. All of these appts will soon become the "new normal" unfortunately but you will get used to it & learn to cope with the new routine. Noone is prepared for all you have to go through when you are diagnosed. It's like learning a new language in a couple of weeks so keep asking questions if you are unsure of anything. If you havent found a support group yet, I would encourage you to go to the McGrath website, in the right hand corner is "Find a Nurse" & then you type in your location & find one near you that you can ring/email direct. The breast care nurses at the hospital are great but the McGrath nurse will be dedicated to you & you can ask her all the dumb questions as they are highly trained. They are a great support to you & your family. I sent mine all my path results so she knew what I was going through.
take care & try to keep positive as stress will only make things worse. We are here for you & sending lots of strength & love your way. xx - @kabash It will all become second nature to you before you know it. It is stressful when the ports don't work but believe me, they really are worth it. Re: other stressful things - you're right - you have to learn to let it go and if you can start doing that now it will be easier in the long run. (I don't mean getting walked over but not letting yourself get worked up over things that don't matter.) If you're feeling nauseous, you may need better meds so ring up and ask for them. I was in misery in the beginning until I rang the clinic and got the word to my onc. Straightaway I had a prescription for Ativan (nausea) and Somac (for reflux - didn't know that was part of what I was feeling) - they faxed it to my local chemist so I didn't have to make the trip in. Don't suffer in silence.
- I have met the breast care nurses at the hospital and I have a card to call them but I have not gotten through. I am keen to find out what other supports are available. I had my second round of AC chemo on Wednesday, it was a very long day again cos when I arrived they were like why haven’t you had an oncology review appointment or had your blood work done and I was like nobody told me to make those appointments! Then when they went to get some blood out of me unfortunately my port was blocked. So we got blood through the arm and also put the chemo in the arm. We managed to unblock the port at the end of the day after much ado. So hopefully we can use it next time. Have been very nauseous and have been sleeping very poorly but I can feel the cancer shrinking.
My mum has just been amazing with helping me through the weekdays with the kids. My husband has been doing weekend shifts and has mostly been good but sometimes brings a bit of stress that I just have to let go of for the sake of my wellbeing.
I know it is going to take some time to get through all of this I wish it would just be over and gone! I guess I have to continue to be a patient patient and take it day by day.
Next week I will have an MRI so I can confirm the boob monster has shrunk and hopefully that will give me a sense that things are going in the right direction. I also get to see the surgeon again, Hopefully this time she won’t freak me out.
Thanks again ain everybody for your kind words of friendship and support. - @kabash Thinking of you & hoping you get clarity soon. Have you got a breast care nurse you can contact? They are trained professionals who can comfort & advise you & answer all your questions, silly or not!! Jump on the McGrah website & find one near you. I have only met mine once as I live in the country but we chat on the phone or I ring/email her with ANY query I have. They know it all & can give wonderful counselling to you & your family. Love & hugs xx
