Good morning IBC community.
5 weeks ago I had my breast referral and after having a mammogram, ultra sound and biopsy, I was informed there and then I had IBC. Yes hearing the words out loud from a professional made things extremely real, however doctor Google and myself had ‘diagnosed’ IBC several weeks earlier because every time I googled a new symptom it came back with the same answer of IBC. So I had done my research on IBC, and what treatment and surgery was involved before my appointment at the referral clinic. The longest two week wait then followed to receive my formal diagnoses from my biopsy results and CT scan wondering if/where it had spread. My diagnosis is grade 3 IBC in my left breast and lymph nodes. I’m ER8, PR8 and HER2 positive. In a fortnights time I start my first of six cycles of chemo, in theory every 3 weeks apart.
From the moment I was informed I had cancer I immediately said to prepare myself for chemo I will cut my hair short and donate my hair to The Little Princess Trust and then shave the last bit off just after my first session as I do not want to experience going through losing my hair in handfuls and end up having patchy hair. This would also mean I wasn’t going to use/try a cold cap. As there won’t be many decisions I can make during this process I would like to be able to make some decisions where I can. This decision of mine has come from seeing the pain my friend went through whilst supporting her Mum during her chemo breast cancer treatment with hair loss, talking to a work colleague who went through breast cancer and more recently with many TV personalities sharing their breast cancer experience of using a cold cap and not being able to tolerate, or it not even working whilst wearing one plus being totally inconsolable when their hair starts to fall out.
My question is what is everyone’s opinion/experience with cold caps, cutting hair in advance and then shaving after first session? I’m only asking this because obviously I’ve had many hospital appointments in recent weeks in preparation for my chemo and everyone (breast nurse, wig consultant) are trying to talk me out of my decision including my female oncologist who when I first met her said to just cut it abit shorter to a bob and continue to dye it! I’m 48 so do have grey roots. This week she casually said to still cut it to a Bob and simply where the cold cap for all sessions and it won’t fall out and even if some did start to fall out as it’s Bob length it’ll be long enough to comb over and hide the patchy areas! My partner did ask her at this point has she ever worn a cold cap to know what it’s like first hand and she did reply to him saying no. Surely empowering a patient is better than putting doubt in their mind, which is where I’m now at? Is it not better being proactive than reactive?
At my referral appointment I was advised as I had a coil fitted (literally only fitted 4 months before due to perimenopausal extremely heavy periods), that I might need to have this removed if when my biopsy results come back and they are hormone positive. Again I was being talked out of getting it removed immediately by my breast nurse and was advised to simply just wait for the results first which were two weeks away. I’m so glad I didn’t and went with my gut instead and my GP surgery removed it immediately for me and since removal my breast isn’t as swollen or inflamed and the purple redness is now a pink redness.
I guess I’m getting slightly angry because I do fully appreciate the professionals are there to guide us through this whole experience but surely the patients wishes shouldn’t just be dismissed? Honestly I’m certainly not relishing the idea of having my lovely long hair cut short and then shaved but it’s self preservation and for me I think this is a better option than trying to be superwoman and put myself though the cold cap experience which will also make my chemo day even longer than it has to be plus the anguish of my hair falling out.
My chemo drugs are - docetaxel and carboplatin and targeted are - trastuzumab and pertuzumab.
All thoughts, opinions, first hand experience will be hugely appreciated and apologies for such a lengthy post!
xxxx
Hello Cazza Wing
I am sorry to hear of your diagnosis of IBC. I did not have the same cancer as you (mine was womb) however I did have chemo and I used the cold cap.
I had a successful experience with the cold cap and would recommend it. It saved my hair (I only had some thinning) and I did not have to wear a wig or use scarves. For me it gave me a bit of control in a situation where I felt things were out of control.
My first thought when I got told about the chemo was hair loss. It is not about vanity it is about identity and wanting to look like I did not have cancer. Some people are brave and get control by shaving their hair and that is fine if that is the best way for them- but myself I could not have done it.
The positives;
It saved my hair, unless you knew me you would not know I was undergoing chemo. I felt more like me. I had some control.
It protected against the small risk of permanent hair loss.( From what I understand paclitaxel/docetaxol group have this small risk. Carboplatin usually only causes hair thinning.)
It protected my hair follicles. I actually had regrowth during chemo. I lost all body hair from day 14 of my first cycle of chemo so I know that although I had some shedding (everyone does) the cap worked.
I had only about 4-6 weeks when my hair looked not at it's best. The chemo can make it very dry- but using lots of conditioner etc after chemo finished helped.
Mentally it was very positive for me and helped me cope with the chemo.
My new hair growth blended in easily with the hair I kept. It grew quickly and is thicker and has more body than it did before the cancer. Partly this is due to it being more wavy. I do have some loose chemo curls at the end.
The negatives;
People often say it adds extra time to the chemo day. In my case I did not find it added much in practice. The cap needs to go on for 30 mins to cool before the chemo drip is started but in this time I was having pre meds, obs done, talking with the nurses, waiting for blood tests to come back. At the end of the day it did need to stay on for a while after the last chemo drug was run through but during this time- they were taking out the canula, going through the meds, talking through the book, and generally getting me ready to go home. I used to have a cup of tea and would be packing things up. I was there all day so it wasn't actually that much. I would say that I may have been able to leave 30-45 mins earlier perhaps.
It can be painful for the first 30 minutes. However you can take pain killers and I found it bearable. I sort of was distracted by the nurses and once your head gets used to the cold feeling, its more a feeling of pressure and numbness. If at any point you don't like it, they can turn it off. Going to the loo is not a problem as they can unplug you from the machine for a few minutes. Sometimes I did have a bit of a headache afterwards but that could well be down to the chemo.
It is very much a personal decision. I went into with the attitude I would give it a try and see how I went. For me it made the whole chemo experience tolerable. It does not work for everyone but I saw a number of people at each chemo session using it and they all kept a fair amount of hair. Without it I would undoubtedly lost all my hair after the first cycle. I kept my shoulder length hair, it got thinner, out of condition but within 4-6 weeks of chemo ending- it was looking better and growing in fast. I had hair regrowth during chemo.
If I had to do chemo again, I would do the same. If I had used it and lost more hair, I would have still continued because of the regrowth and protection of my hair follicles/ protection against permanent hair loss- which although rare can happen with some chemo drugs.
Good Luck, whatever you decide. If there is anything else that you want to ask- then please do so.
Jane
